Chesterley's Child

Looking forward : Goals and self-advocacy

2011-06-26T21:19:00.000-04:00

Two events occurred this weekend that has caused me to start looking forward in new ways for our boy. First was the consult w/ a visiting PhD at T’s ABA center. Side note: one of the most amazing, I-have-to-pinch-myself opportunities that T has through this center is the PhDs that come in from around the country and consult. The head PhD of the center recognizes that he cannot be an expert on every kid and every type of learning style and age that walks through his clinic doors, so he has his trusted and well-regarded colleagues come in to take a look at programs. This Consulting PhD’s particular area of knowledge lies with drawing out conversational language, and that has been identified as one of the main targets for T at this time. He has words, but they are still mainly echolalia and scripting – and we’d all like for those words coming out of him to be more purposeful and conversational. So, Consulting PhD observes T, looks at his weekly program, and starts discussing long term goals for him with T’s consultant. He asked questions like: “What do you see him doing in 5 years? What do you see him doing in 10 years? Do you see him reading in 5? Do you see him using money, buying things for himself?”, and other probing questions. He asked her, but started directing the questions to us as well.

I admit my mind went blank. I know I’m supposed to have dreamed these things, but in all honesty, this child of mine is such a mystery that I have absolutely no idea what to even dream for. I believe with all my heart that this child is a beautiful, smart, funny, capable kid who can learn and love and people who know him and work with him absolutely fall in love with him. But I don’t know about these tangibles. We’ve hoped in the past, trying diets, supplements, vitamins & injections, have seen therapists come and go, teachers disappoint…it’s not that I don’t dream for him, but I don’t allow myself to dream too much. I admit that. I feel that I am focusing on the positive by doing so – I’m not trying to cure him or defeat him – just support him and advocate so that he can be the best that he can be. So I haven’t put specific expectations on him, such as reading by the age of 15 or buying a snack with his own money and counting it out himself by the age of 18 or living independently by 26…I just haven’t thought about that too much. Just keep moving forward, just keep making progress, and let the chips fall where they may. That’s what I’ve thought.

But there is Consulting PhD, saying that if we don’t have specific expectations and goals, then he will probably learn lots of useful stuff, but not in a way that will move him toward anything in particular.

BAM.

Then he said, in passing, “I see him reading in 5 years.”

Okay. Start considering goals. Set expectations.

Then the next day, I attended the Autism NOW summit, sponsored by the Arc of Indiana and an initiative of the national Arc. I had heard of people calling themselves “self-advocates”, but had never encountered any or interacted with them. This summit was a …”two-day event that will include opportunities for networking and relationship-building between stakeholders, families, and people who identify as having an autism spectrum disorder or intellectual and developmental disability; for sharing information and resources related to the area of autism and intellectual and developmental disabilities; and for celebrating the local and regional autism and intellectual and developmental disability community.” We sat around tables and answered questions such as “How do you define self-determination?”, “How do you describe self-advocacy?” & “What is the biggest problem facing the Autism community today?” The parents dutifully replied with thoughtful replies, textbook and research-study supported…then the self-advocates spoke up. After listening to their experiences and their stories, I humbly and respectfully wanted to say nothing else and listen ALL DAY to them. I wasn’t even planning to go to the second day of the summit, but came home to Rob yesterday and said “I think I need to go back tomorrow.” So I did.

This morning was their day, and our opportunity to ask them questions, for it became clear that we are not the experts here. I could go into great detail, but one story stuck with me: a member of the President’s Council on Disability spoke to us, who is himself a self-advocate, and described his evening the night before. He went to his own hotel room, settled in himself (no one did it for him), and decided that he wanted to go out to dinner. So he did. He went when he wanted to. He ordered what he wanted to eat, and even had some treats and dessert because he could. “And you know what?”, he said, “many of my friends cannot make those choices for themselves. They eat when they are told to, where they are told to eat, and eat what is prepared for them.” Then later: “How can we say YES WE CAN! When someone else is in charge?”

I sat in awe of these individuals. I was so inspired, so humbled. And at the same time, found myself in the conundrum of wishing this empowerment for T, but wondering how to access that for him when he can’t tell me that he feels sick, or scared, or hungry. How do I empower him to speak for himself when he can’t? And when we haven’t uncovered an adaptive communication device that works for him yet?

Keep teaching him. Keep at it. Keep him in this center where he has the best chance of anywhere of learning to communicate. And then when he can, I must remember to LISTEN.

So this was a pivotal weekend. I’ve realized that I need to move from the mindset of protecting him to empowering him. Now I need to let that sink in.

A night in the life of autism

2011-06-13T21:45:00.001-04:00

Tonight we went to our church’s version of vacation bible school called “Party in the Park”. Our church’s building sits, quite literally, at the crossroads of two very different neighborhoods in our Midwestern Capital City. The old, graceful & stately mansions immaculately maintained by doting and well-to-do movers and shakers are mere blocks from one of the poorer, blighted and tougher neighborhoods in town, and our church is right smack in the middle. This church has worked hard to welcome and serve all, and the rainbow of people in our pews each week reflects this diversity (which is one of the main reasons we are members.) Instead of offering a VBS for our congregation and asking congregants to invite friends, we put out tents in our parking lot and the nearby park, serve dinner, provide live music, play games and say “everyone come – this is a neighborhood party - join in the fun!” We get a good turnout, and it is wonderful to see all types of people under the same tent, eating together and conversing, as if this happens every day.

And it can be noisy, crowded, and overwhelming.

Initially, the noise reducing headphones were left in the car because when asked, T did not want them. But as we got to the registration table and heard the band playing under the large tent, the headphones were not nearly as unwanted as they were moments before. Back to the car we trekked, the headphones were retrieved, and we returned to the tent to eat dinner. It was just noisy enough that T did not eat for a while, but just sat there looking around. After some prompting, he did eat. We are thankful that he is a good eater, and picnic fare is a pretty safe & acceptable bet for him.

Then came music time: group singing. This is such a frustrating curiosity to me…we go into church and he almost insists that we sing. “Sing!”, he requests, “sing!” But anywhere else, chances are that it will not go well. In some situations it is okay, however, but it seems that many attempts at desensitization need to occur before he is okay with it. If he does not expect it, or if he’s already in a stressed state, if a group starts singing, we are in trouble. And the leader began the song, and so did the usual breakdown.

What happens? When he is stressed, he repeats words he has heard when he has been stressed before, and will repeat them insistently, looking me directly in the eye until I repeat them back – which of course, only makes it worse. “Stop playing with the microwave”, “Be gentle with sing”, “be gentle with Happy Birthday”, “be gentle with the phone”…over and over, until inevitably he cries. I haven’t figured out how to break the cycle yet. And I didn’t tonight.

This absolutely breaks my heart because one of my fondest memories of camping during the summertime was all the singing. Our church went on a week-long “family camp” and after each meal we’d sing and sing out of mustard yellow songbooks filled with peace-loving, fun songs - I learned some great singer-songwriter songs during that time. And we have a family that sings and would love to sing the Doxology before meals when we are all together, but it is not possible. I long to stand around the piano at Christmastime and sing carols with my family, but we can’t. And that makes me sad, so sad that tears are welling up as I write this. I love to sing, I love group singing, and my son hates it.

Except in church. But this wasn’t church and it certainly wasn’t the sanctuary, so it was NOT okay with T tonight.

We took a break, away from the crowd, and he cried for a while on my shoulder. Then he pulled away, because of course, I can’t hold him for too long.

After the tears dried and the singing was done, off we went to the arts & crafts table. Another struggle. He doesn’t do arts & crafts – it requires lots of listening to directions and using fine motor skills that he just doesn’t have yet, so these are always frustrating events for him. But I carried on, hoping that with hand over hand guidance and Mommy’s TLC, we’d get it done. Nope. More repeating the stress phrases, more tears. And by this point, I’m fighting back tears myself. How much work does this has to be? How far do we push inclusion when it does nothing but stress him out? We leave the tent with a dreidel that I’ve made with his scribbles on it, but I hang on to it as a trophy of our noble attempt to participate.

Then, things finally look up: game time. He played his first game of Corn Hole, and did a nice job (assisted) with taking turns with a bright, handsome kid from the neighborhood (and got two of four beanbags in the hole.) Bubbles are always a hit, so we played with those while the other boys played kickball. Seeing how much fun they were having, I took T over to watch the game, and then decided to get him in line for his turn to kick. Why not? How much more stressed could he be, honestly? When it was his turn, the ball was rolled to him, and he waited until it stopped (he’s not ever tried kicking a ball on the move like that), but then gave it a good kick and I took off with him in hand to first base. We made it! And he was smiling and laughing all the way. The next boy went, and off we went to second base, then third. We made it home on the next kick, me pulling him along and him laughing and laughing. Evening salvaged.

The evening finished with chocolate chip cookies for all, and then it was time to go home. And we do this all again for two more nights. Perhaps we’ll skip the group singing and arts & crafts. But if I do, will he ever learn? If I don’t give him the opportunity and stretch his comfort zone, how will he ever acclimate himself to these situations? How much of a childhood does this kid have to miss?

So I will carry on.

If not with this congregation, where?

He's writing

2011-05-20T15:05:00.000-04:00

A few days ago, T’s ABA consultant came to our house to discuss two things: 1) his upcoming move to the older kids’ center and 2) his new writing skills!

Handwriting has been a long process, and it is still underway. As I watched T write on Wednesday, it occurred to me that I very well may be witnessing the beginning of his being able to communicate with the outside world in a way that may be understood. His Consultant gave him a piece of lined paper and asked him to write his name, which he did. “A little sloppy, but I’ll take it for today”, she said. And sloppy as it may have been, there it was: his first and last name with a space in between, and legible.

Next, she told him that he’d be writing the word “snake”. Letter by letter, she asked “what letter sounds like...?” and then said the sound: “ssss” for S, “nnn” for N, etc. Letter by letter, he repeated it back to her and then wrote it. When he got through all five letters, happy shrieks ensued and lots of tickles – he was SO pleased that he did it!

If that wasn’t enough wonderfulness, she turned over the paper and asked him to write the letter that sounds like “ah”, then “uh” and “eh”. He missed the “eh” at first (wrote A, but when “eh” was repeated, he got it right).

I’m tempted to say something like “MAGIC!!!” “UNBELIEVEABLE!!!” And yet, neither is true. This was not magic. It is the result of the right therapy for him and over 3 years of dedicated, hard work on his part and theirs. So while I watched in wonder, and as I hold those amazing examples of his work in my hands, I stand in awe – and cheer on one amazing kid. I can’t wait to see what he’s going to show is next.

The older kids’ center is one of the first of its kind in the region and perhaps even in the country. It is an ABA clinic designed for the needs of youth with autism ages (approx) 8-18 years old, perhaps even older. As one of the PhDs who consults there has said, “In spite of all that we’ve done and all the good work and therapy that we’ve done, here we are.” Meaning: despite all the intense therapy, this is not a cure. There is no cure. And some kids, as they age, still require direct, small group instruction with supports in place so that “behaviors” don’t interfere with learning. T still requires this, in our opinion. Despite all this work (for which we are eternally grateful) if he works in a small group, he eventually fades back, withdrawing his attention from what is going on so he can flip his fingers or a plastic bracelet. And we have witnessed it ourselves: this beautiful boy fades off, not causing any interruptions or acting out, and he is ignored due to the more demanding needs of the other students. He is, essentially, left behind. Clearly, he is able to learn, and has the right to do so in this most appropriate environment.

I admit to being relieved that his individual program will be more weighted toward academics, with a healthy dose of “life skills”. The older kids’ center does write programs for each kid there, and some kids’ programs are essentially these life skills – and thank goodness that it is available for them. With these writing skills and the thinking that he clearly is doing, he begins a more academic program in two weeks. I am pleased and so happy for him. Long ago, when he was about 2 years old, I was able to give up mentally the cursed developmental charts with their typical age timelines. I threw them out – the age timelines, anyway. Something shifted in my brain, and I was able to be at peace with thinking that those blasted timelines don’t matter for him anymore. All that mattered is that he meets those milestones eventually - in his own time, with the right supports in place. And here we are, and I still believe that. As long as he continues to progress and learn – that is all that matters (well, aside from him being physically healthy, and having his emotional needs met, and knowing that he is loved like crazy…).

PBS Autism Now

2011-05-14T12:38:00.001-04:00

I finally got around to watching all the episodes on the internet. Lately I haven't been able to watch any evening TV show with any regularity, so this task has remained on my Franklin Planner's task list dutifully for the past few weeks.

Nicely done, PBS. I appreciated the honesty. I appreciated seeing no "recovered" kids. I appreciated the acknowledgement that we are at the tip of the iceberg of people with autism needing services. I appreciated the experts saying that yes, we know a lot more than we did, but there is still a ton that we don't know. I appreciated that they said that there is no one cause of autism. And I appreciated that there were no simple solutions offered, because those of us in the thick of it would confirm that nothing about diagnosing, researching, treating, and living with autism is simple.

One episode dealt with the lack of services for individuals with autism once they are over the age of 21. I will admit that while I am in a very positive place with our boy right now, this subject looms large and imposing. It's not even so much after 21 that worries me…it is what happens when Rob & I are gone. I say that I need to live to be about 120 years old, because I want T to have a full life, and if he lives to be 80 then I need to live to be 112 years old. I need to outlive him by just one day. That is the only way I will know that he's safe, that he's taken care of. We've put things in place – all the wills & Letters of Intent – but I still worry. And in this age of federal & state budget & service cuts, who can reassure me that he will have any services whatsoever?

My fear is that the numbers of people with autism will completely overwhelm the systems that are in place, and they will be seen as an impossible burden on society. If I spend too much time thinking about it, my heart actually goes into palpitations. So, I try to concentrate on today, tomorrow, and next week - maybe even next month. I know we need to have a vision for him, and it needs to be much more refined and honed than "I just want him to live as independently as possible and have a meaningful day and be a productive member of society…" No, it's going to have to be more than that. Because more and more, I'm beginning to believe there won't be anything for him. I am not usually pessimistic, but I think being overly optimistic at this point won't serve him well. We'll need to plan on having no help. And that way, if there are services in place, then it will be a pleasant surprise.

Communities are popping up here & there that are created for adults with developmental disabilities. They provide living space, work opportunities and supervision in an environment that caters to their needs. It has occurred to me that this sort of a place could be an option for our son. Those who advocate for inclusion are resistant to these communities, and I get that. But while I understand and support inclusion, I don't always believe that it works out best for absolutely everyone with developmental disabilities.

It's hard to look that far forward, especially when I've just tucked my little guy into bed…my little but growing guy that still requests "Goodnight Moon" and loves Baby Einstein, even though he turns 10 this summer.

I started this post writing my reaction to the PBS Autism Now series, and see where it took me? Well, the series got me thinking. These future issues are the ones that lay heavy on my heart, but it is a burden I carry without regret. This growing boy continues to amaze and inspire me, and Rob & I have done a pretty darn good job of putting our heads together and deciding what to do next – so far. I can't control the future that far out, but judging from how well T is doing, I do have faith that we will figure it out.

Insurance

2011-05-14T12:36:00.001-04:00

We are really, really, really lucky to have health insurance that covers T's ABA full time. I always hold my breath when the EOBs arrive, despite several years now of invoices reimbursed. Only occasionally is there a bump in the road, and today brought a bump. For no apparent reason, insurance has decided that it will only reimburse partially. "Charge exceeds the allowable amount for this service" and "Charge exceeds fee schedule/maximum allowable or contracted/legislated fee arrangement." Odd, because nothing has changed from the previous invoices. Hourly fee structure changed back in March, and this is for an April invoice. Other March invoices, since the fee schedule change, have been reimbursed.

Sigh. Here's to hoping that it was just a data entry error.

Tomatoes

2011-01-30T17:46:00.002-05:00

We're making connections, and today was a fun one. We were in the produce section of the grocery, and T stood next to the tomatoes, saying something quietly and looking at me intently. I got closer and said, "I didn't hear you buddy...say it again." So then, very quietly, he sang "If...you...like...to...talk...to tomatoes" (which is from the opening credits of Veggie Tales videos, for those of you who are not familiar with them). I laughed out loud and congratulated him on making that wonderful connection!

Such a sweet moment. Next time I'll take him to find squash to make him smile and potatoes so he can waltz. :)

"Good Job, T"

2011-01-16T20:09:00.003-05:00

T has reacclimated himself to the church service, now that we've been attending regularly again this month. We missed several Sundays in Nov & Dec due to illness, travel, etc, so that when we started back this month, we had a bit more agitated talking and refusals to leave during children's time or go down to take communion. (Only after I asked him if he wanted a piece of bread did he decide it was a good idea that Sunday!)

Today he was very happy during the service, so the congregation was treated only to a few happy vocal exclamations until the prayer. He was being so good and so quiet, with his hands folded in prayer like mine, that I couldn't help myself. I leaned over and said "Good job, T".

Echolalia. If you are not familiar with it, it is very typical for children with autism to repeat either what has just been said, or something that they've heard previously and which they enjoyed hearing for some reason. Lately, not only has T has been echoing lots of what I say, he will even repeat the "um-hums" or "yeah"s that he hears, and demands that I repeat them back. Perhaps it is a way to connect with me, or an initial attempt to participate in a conversation. Whatever the reason, he repeated "GOOD JOB, T" in a most confident and present voice. I had no choice at this point (due to the intensity of the stare) to repeat it back quietly, then thankfully, there was only one more "Good job, T" out of him before he went back to sitting quietly. I just had to laugh - it was so completely charming and funny! And I'm sure that anyone nearby knew exactly what was going on, and the parents at least were silently laughing with me.

Brief scare with Anthem

2011-01-12T22:11:00.003-05:00

T receives full time ABA therapy paid for by insurance.

I realize the miraculous statement that I've just typed above. Big Midwestern University, Rob's employer, covers it. That's another miracle. And even if they decide to drop ABA coverage, our state has an autism insurance mandate that requires ABA to be covered fully and with no cap as long as it is part of his Treatment Plan as written by his PCP. This is probably the main reason that despite a finished PhD, we do not plan on going anywhere anytime soon.

Up until recently (approx 2 months ago), there were no in-network ABA providers, period. So Anthem had to reimburse us at out-of-network (i.e. much higher) rates. December 27th, the Monday after Christmas, as we still basked in the happiness & busy-ness of post-holiday winding down, a letter arrives from Anthem saying that they are building an in-network group of ABA providers...and our center currently is not in-network.

Okay, I acknowledge that they have the right to do this. I'm a little surprised that they haven't done this before. But the timing of it - right after Christmas - and the way they went about it - just kind of stinks. Before sending the letter to us (and all Anthem customers whose child/ren receive ABA), they invited small clinics to become in-network that are in towns within a 50 mile radius of Capital City (where we live), in addition to independent providers of ABA. My brain went to some very scary places...would they say that their network had been built and no providers close by would be allowed in? They could easily say that these other clinics are within 50 miles...ooh, I could see this going very badly.

However, I also knew that somehow this would all play out okay. And I'm glad to say "so far, so good." The nurse case manager assigned to us has assured us that to the best of his knowledge, Anthem will not keep a provider from joining if they choose to do so. (Whew.) Our center and the other local centers are banding together to work with Anthem; it seems that ultimately going in-network will be inevitable, and that may end up not being so bad. Fingers crossed. If this happens, then at least we will probably be able to relax about insurance coverage for T's ABA for another year. In the meantime, we take every minute we can get.

After all the drama in late 2009, the PhD running T's center has proven that he has the kids' best interest at heart - and while he needs to keep the center up & running, he is NOT doing this to get rich. So even though I could be flipping out about this, I'm remarkably calm. Yes, I recognize that there may be a bump or two while this gets ironed out, but I believe it will be okay.

Disney World!

2011-01-09T20:44:00.003-05:00

We did it! After years of wishing (and many years of having given up on the dream/expectation that we'd take our child to DisneyWorld), we took T...and he had a great time!

Highlights:

He didn't make a thing over flying. In fact he really seemed to enjoy it, looking out the window much of the time while listening to Baby Santa on our iPod. The only tough moment was accidentally leaving a plastic bracelet (think Livestrong), his current favorite fliptoy, on the airplane. I was able to find another almost acceptable replacement (small plastic slinky) and eventually all was well.
He ate and slept well away from home, and didn't mind the characters. In fact, he didn't make a thing over them - just kind of looked at them as if they were just other people. He continues to be one of the most non-judgemental people I know!
We found out that he's a Lady's Man. The only character he greeted by name was Minnie Mouse. He blew a kiss to Cinderella in return to one she blew to him. Those two moments were the only interactions he had with the characters!
He is my rollercoaster buddy. We took a chance and had him ride Big Thunder Mountain Railroad, and he LOVED it! Laughed and giggled all the way. He had such a good time that we asked if he wanted to ride it again, and he answered emphatically "YES!" Expedition Everest turned out to be much, much more intense than any of us expected, but he recovered much more quickly than any of the rest of us who sat down for 30 minutes trying not to throw up.
He loved Soarin', the simulated hand-gliding ride over California. He looked at me at first and was pretty scared when the IMAX screen started up, but I told him he was safe, and within a few seconds he was grinning and laughing. Confession: he watched more of the movie than I did (I had to look to the side several times) and way more than Rob did (he admits to closing his eyes for much of the ride!)
Overall, he really was a trooper. Talk about a change from the normal routine...and he went with it!

Many, many thanks to my brave and generous parents who made this trip possible, and to the most supportive & connected sister ever who added to the fun and gave constant support the whole time. My heart is full of gratitude. We have been given the gift of fun & happy memories as a family, as well as the knowledge that our boy is capable of travel and new experiences.

More details as I remember them. I want to go back!!!

The Lord’s Prayer

2010-10-05T21:14:00.001-04:00

My mind has been spinning in some very interesting directions since reading Autism Prophecies by William Stillman. He's also written Autism and the God Connection and The Soul of Autism. (I can't wait to read those.) I highlighted sections, took notes, and every time I recalled an event that I thought was wonderful and kind of spooky, I wrote it down in the back of the book. Suffice it to say, I believe this child is connected with God in a very deep, very real and possibly very tangible way.

Tonight gave me even more proof in my theory. After getting out of the shower, he gave me his usual wet hugs, and then said something that sounded like "Pray". So I said our usual goodnight prayer:

Father, we thank you for the night
and for the pleasant morning light,
for rest and food and loving care,
and all that makes the world so fair.
Help us to do the things we should:
to be to others kind and good,
in all we do, in all we say,
to grow more loving every day.

He finishes each phrase for me, and has even on occasions repeated entire phrases. Side note: one day, a few years back, one of his ABA therapists was particularly sad; her grandmother was very ill and dying in another state far away. She was doing her best to hold it together while working with him that day. When I picked him up, she reported to me that he was saying "Father, we thank you" and "grow more loving every day" repeatedly throughout the day.

Okay, how did he know to pray for her?

That's just one of the sort-of-spooky and wonderful moments I'm talking about.

Back to the Lord's Prayer: after saying our evening prayer, I thought that I should also start teaching him the Lord's Prayer that he hears every week at church. So I started to speak the words, and he looked at me, smiled broadly, and started jumping and dancing around! I've written before about this child being excited to pray, and here he is again, literally dancing with joy hearing the words Jesus taught us to pray.

I think William Stillman may be on to something. These children may be teaching US.

Music Therapy – first appointment

2010-09-10T14:39:00.001-04:00

T had his first music therapy appointment today! This is something I've been drawn to for him for years, and today it began. His therapist, Anne, let him explore during this first session. The room was filled with rhythm instruments, a few keyboards, bells and noisemakers. He went to the keyboard right away and found his "A" (an octave up from the lowest note on the piano). He always must find this particular note whenever he sees a piano anywhere and today was no exception. Anne observed and attempted to play what he was playing, but was playfully rebuffed: "No sing", "Green sing", or my favorite new one: "Stop it." There was never an angry moment – insistent perhaps, but never angry - which is good! He also played the bells (nine of them, all different colors, with a button on the top that you press like the "service please" bell you see in stores), the rainstick, maracas, rhythm "eggs", and a new favorite: the big drum.

I stayed in the room the whole time – 45 minutes!!! – so I could observe and translate (green is a negative adjective, "no-okay" means no, etc.) Both Anne and I tried to get T to sing, but he was a little on edge today – but again, he was in good spirits the whole time. We were hoping for a good 30 minutes – Anne said that many times, her new clients are looking longingly at the door after a few minutes, but not this little guy! He said "stay here" when given the option to go in the car or stay. So 45 minutes it was – and Anne was so pleased (as was I).

While the session went on, I realized my long term goal for him: to be able to share music. Right now, he is very territorial and protective of the music he makes. He can sing, but does not want others to join him. When he plays piano, no one is to try to play at the same time. Unexpected singing is very, very aversive. My theory is that he has such wonderful music going through his head continually that any other music disrupts it. This could also explain the aversion to phones ringing, inventory chimes going off in fitting rooms, electronically generated doorbell chimes, etc. (in addition to the auditory sensitivity). When I told Anne this goal, she smiled and said that it was a good goal, and if that is what he gets out of music therapy, then what a gift it will be. Agreed! Next appointment in two weeks. Can't wait!

Be Gentle with Phone

2010-08-30T20:35:00.001-04:00

So to compare and contrast with church yesterday, we had to deal with phones ringing today. This has been an issue for several months now. T does not like the sound of the phone ringing, to say the least. It has moved from simply covering his ears and inhaling quickly when the phone (cell or land line) rings, to crying and stressing only when we answered it, to tonight's new wrinkle: going into full OCD scripting of "Be gentle with phone" even when we don't answer. Rob & I tried several approaches to distract, redirect, ignore, even attempted to acknowledge and validate that the phone hurts his ears and surprises him, to no avail. For a full 45 minutes, we heard "be gentle with phone" over and over, with him doing everything from pacing to looking us directly in the eye – nothing would stop it. And we didn't even answer the phone this time.

I'm tired today. I'm fighting a head cold valiantly, and didn't get enough sleep last night because AMC insists on broadcasting Mad Men at 10pm Sunday nights. (Okay, I could DVR is and watch the next day, but I don't.) When I'm tired I don't have the mental stamina to stay calm, and about 35 minutes in, started losing it. It is at these times especially that I am so thankful that Rob & I are doing this together. I don't know how a single parent would do it. When I'm about gone, Rob can step in and share a really sweet moment with him. T was still insisting that we "be gentle with phone", but sat in Daddy's lap and buried his head while he cried a little. It broke my heart and warmed it all at the same time.

Eventually it was time for his shower, and the change of scenery – and my last ditch attempt to distract by reciting Dr. Seuss' ABC – snapped him out of it. And just like that, I had my happy boy back.

I really don't know what we could have done differently, if anything. Off to write a note to his behavior consultant – another reason why we're sticking with ABA full time (you know: Applied Behavior
Analysis).

And even more reason to be in awe of what happens with him in church on Sundays.

Church music

2010-08-29T20:11:00.001-04:00

T is going through a phase where any unexpected music is aversive. I had no idea just how often music pops up in our daily life until this phase, so it gets challenging. Just try listening to All Things Considered, Morning Edition, Prairie Home Companion (can you tell I'm an NPR geek?), or watch any recent news broadcast about the 5^th anniversary of Hurricane Katrina – there's always jazz in the background – or even this morning on CBS Sunday morning when they did a segment on a real show choir (ala "Glee")…all of these situations are met with a demand of "no music!", "no no music", and "be gentle with music!". The request/demand does not stop until it is met. What's odd is that he really does love listening to music – but it really has to be on his terms.

Except at church. Once we step into the sanctuary, he actually requests "Music", and will get quite insistent if there isn't any. He sits and listens to the organ play the prelude, watches the choir sing, sits and listens along during the hymns, much of the time smiling and happy. We might even get a joyful vocalization during an instrumental piece, as we did today during a piano duet during the Offertory. And while we frequently will need to ask him to use a quiet voice during the evening news broadcast so we can hear it, during church he is relatively quiet – and will lower his voice when reminded. Much of the pretty intense stimming (swinging his legs, flipping fingers, scripting) eases during the service, and there are moments that he sits quietly, looking at his surroundings. I know he's hearing the words and taking in the teachings.

While he sat quietly during the service today, I spent much of the time in absolute wonder of this child. I believe he is connected with God in a deep way that I am only beginning to understand. In fact, I'm beginning to believe that these children, these quiet, gentle & sensitive children, "get it" much more than we ever do.

Full time ABA:VB

2010-08-23T22:29:00.001-04:00

The decision has been made: T will attend the Verbal Behavior clinic full time and no longer go to the public schools for a 2 half-days a week. It feels good to be on the other side of this decision, honestly. It was a tough one because we didn't make it due to any displeasure with the schools. It simply didn't make sense anymore to split his time. And honestly, how ridiculously blessed are we in comparison with other families in the country? We have a CHOICE between a TEACCH classroom and full-time ABA therapy paid for by insurance. That's just stupid lucky.

The fabulous SLP and his classroom teacher were both supportive of our decision. Clearly they weren't pleased, but neither were they upset or defensive. In fact, the SLP said that she couldn't argue with anything I was saying, and his teacher said that he is one lucky little kid to have parents who even know such options are available. As much as I currently doubt whether he will ever be in the public schools full time, I do not want to burn that bridge. So far, it appears that I have not.

So this opens up time and energy for other opportunities. Which brings me to the next remarkable event (coincidence?): While we were pondering all these things in our hearts, T's new OT gave me the business card of a music therapist that consulted with her on a mutual client. OT mentioned T to Music Therapist, she's intrigued, and I have the opening I've looked for. I've been drawn to exploring music therapy for T for months, perhaps years…but could we afford it? Health insurance surely would not cover this in addition to ABA, and we are 4.5 years into a 12 year wait for waiver services (waivers can cover music therapy.) But, I thought, nothing to lose by meeting her and discussing financing options/realities. Fast forward to last Friday: I gird my loins for the bad news, fully expecting at least $150/hour. I'm told they bill $11/15 minutes. Eleven dollars every fifteen minutes. Forty-four dollars an hour. AND…there is time in her schedule on Friday afternoons: the very time that T had been in the public schools.

I think this is a very, very good sign. His first appointment is September 10^th. Onward and forward we go, making it up as we go along, and feeling very, very blessed along the way.

Text from a song sung at our wedding: "We're neither pure nor wise nor good. We'll do the best we know. We'll build our house and chop our wood, and make our garden grow."

Kung Zhu pets

2010-08-13T10:54:00.001-04:00

T was given a Kung Zhu pet for his birthday from a friend this year. This was at my suggestion, because I've seen Zhu Zhu pets in Hallmark stores and thought that it might be a fun toy visually for him. Of course, being out of the loop on hip & current toys, I had no idea that Kung Zhu pets (more geared toward boys) were even out there. So I spent a good part of last night online, watching demos and trying to figure out the whole accessory thing. The Kung Zhu pets, unlike the original Zhu Zhu pets, actually battle each other one they are pulled across a strip that programs them to fight. There is a fighting arena and everything – battle armor – the works. As I was watching this, a thought occurred to me: I don't think T even knows what fighting is.

That's okay with me.

I believe I shall get him the original Habitrail-like accessories. Why teach him violence?

These kids may be showing us the way.

Decisions about school

2010-08-10T21:58:00.001-04:00

The public school year starts tomorrow. Despite the IEP that is all set to go, complete with the two half-days a week with him in the TEACCH classroom and with ABA therapist from his ABA clinic attending with him one of those days, I'm beginning to have doubts as to whether this is all worth it. We have worked hard to maintain a good working, respectful relationship with the public schools while he attends the ABA clinic full time, all in the hopes that he will eventually transition out to the public schools. This particular elementary school has a TEACCH classroom and the most wonderful, dedicated and imaginative SLP on staff…I didn't want to completely let go of all of that. We truly love this elementary school: the diversity, the staff, and the dedication to their special education classes & students make for a unique place where we were excited to send him, and we lobbied hard for us to continue this set-up for the fall. (The fall, which starts tomorrow, August 11 – how is that possible?)

Yesterday, completely unprompted, Rob expressed some concerns about continuing this. I had to admit that I've changed my mind about it too. So what's changed?

T turned 9 this summer. He remains a happy, healthy kid with very serious communication delays and challenges. Sensory issues and repetitive behaviors, so very typical for people with autism, abound. As of now, we have no evidence that he reads or that he is unable to share with us an ability to do math or other academic activities. This is not to say that he isn't intelligent; his intelligence is not measured by academic practices. He is blessed to have the opportunity to go to an ABA clinic full time, paid for by our health insurance. This is nothing short of a miracle for him and for us. They love him fiercely there. And each person that works with him is personally invested in him for the long haul. The PhD who runs the clinic and his consultant can be with him for years to come, tailoring his program specifically to meet the needs of his "beautiful brain" (as described by his neurologist). At what point do we say that the public schools may not be in his future? Or perhaps not in the near future for him?

If this clinic were not available to us, the elementary school would be a good place for him. He would learn skills, get to work with the fabulous SLP there, have some interaction with typical peers – it would be okay. As good as a public school could get in the state, I imagine. Even so, it is not his home elementary school. The TEACCH classroom is the self-contained classroom which is housed in another school in our school district - so it's not like he's getting to know the neighborhood kids. And even with all the work that's been done, he needs direct 1:1 instruction (or very small groups) to learn. He does not learn in a classroom setting.

My heart is heavy because I understand the inclusion movement. I think it is vital and tremendous, and simply the right thing to do…for the kids that can handle it. T could "handle" it, but is it best for him?

What is there not to like about the clinic? He works 1:1 with one therapist in the morning, has 2 hours of small group and play time, then the whole afternoon he's 1:1 again with a different therapist. His therapists are fun, energetic, engaging, and totally dedicated to his progress. He gets hugs, tickles, smiles, and gets plenty of breaks to go to the motor room for sensory fun. He works HARD for 7 hours a day. The rate with which he learns new skills & tasks puts a year's IEP goals to shame.

I must acknowledge that I am loathe to make changes for him. It is easier to continue with the routine that we've established. And there is some comfort – and it doesn't take much courage – not to decide and keep my fingers in both pots. I don't want to let go of the public schools, but if I am honest, I'm not sure that 2 half days are really benefitting him. It's just keeping a dream alive that maybe I need to release. I've dreamed new dreams - and have released the typical ones that most parents get to keep without much thought. I don't know what his future holds and I can't control it. I learned long ago that the best way to take care of his future was to do what he needs today & tomorrow, and perhaps even next week. The ABA center has done brilliant things for him. The school would be fine. But I have in my power the ability to get him the Cadillac of care. Stay tuned. We may pull him from the public school completely in the next few days…for now.

Expressive language

2010-07-15T22:22:00.002-04:00

T likes the water. And when I say he likes it, I mean he really, really likes it. In fact, I can't leave him for too long unsupervised while he sits on the toilet, or he'll play in the water. So it should come as no surprise that he enjoys his nighttime routine which still includes a bathing time. A few months ago, after a visit to my parents' home where they only have a shower, T started requesting a shower at night - and he's never gone back to a bath.

The reason I titled this post "Expressive language" is this: tonight, around 7:15pm (about 45 minutes early), he said spontaneously, "Shower time." And off he trotted to the bathroom.

I just love those clear moments!

Annual Case Review 2010

2010-05-19T21:12:00.002-04:00

Today was T's ACR (Annual Case Review) at his elementary school, where his IEP (Individualized Education Plan) is updated for the next year. Law requires that it be updated at a minimum of once every 365 days. These Case Conferences can be harrowing experiences - for all involved. Parents & school districts can get into some very heated debates about what a "Free and Appropriate Education" looks like. Believe me, I hear about it at work every day.

Rob & I have always gone out of our way to collaborate with the schools. I suppose this is helped along by 1) my need to please others and be liked, 2) my diplomacy, and 3) both Rob's & my mother having taught in the public schools. We've grown up hearing the school's point of view, and I even did a short stint myself in the public schools, having student taught during my senior year in college. So we've approached school professionals as such: professionals, not adversaries. In our early days, when our Case Conferences actually happened in our kitchen, I baked cookies or banana bread, had coffee ready, and we all mapped out an IEP for T together. While I haven't provided a baked good in a while, we still take this approach: respect, collaborate, listen. I don't know if we've been lucky, but with only one glaring exception, we have always had an excellent working relationship with the schools, and have managed to get what we want for our boy.

(The glaring exception being the nightmare speech therapy situation in Small College Town where T didn't get speech therapy for 4 months solid - LONG story there. Another post, another day.)

I don't expect the schools to provide the Cadillac education for him. That is up to Rob & me to assemble for him, and the schools are part of the package.

Long story short: we continue to have an ABA therapist from his therapy clinic with T during one of the 1/2 days he attends. Public schools in general have a very strong bias against ABA, and most of the time it is best NOT to even mention ABA during a Case Conference (even though the movement of using Positive Behavior Supports basically is ABA - but we won't mention that). I was prepared to have to go to bat to keep this in place for him, but not a word was mentioned, nothing challenged - just keeping the same services he has this year, only adding some more directed social interaction opportunities with typical peers during recess and lunch.

I thanked all the staff for working so nicely with us, ironing out this unique situation we've put together for T. We were thanked for being so good to work with.

It feels really good. It really doesn't have to be a big battle. Perhaps the fact that T doesn't have majorly disruptive behavior problems helps - I'm sure it does - plus he's so darn cute and smiley that everyone that works with him adores him...that has to help as well!

After all the drama at his former ABA clinic last summer & fall, and all the ugly behavior and manipulation & secrecy, this was a most welcome meeting. Look out 3rd grade, here we come.

I love you, Mommy

2010-05-17T20:09:00.002-04:00

He said it! HE SAID IT!

Okay. Yes, it was prompted. But everything he can do has started off with prompting, so I will consider this to be wonderful and miraculous.

This was a case of making lemonade out of lemons. It started when he started saying "I love you Duckett" about a week ago. Duckett was his beloved speech therapist - his first one from the public schools, and who is still the object of his adoration even though he's seen her once in three years. The one visit we had with her - just over a year ago - was memorable because of his reaction to seeing her. He walked into her office, saw her, shrieked with joy and then turned his back, covered his eyes and hid - almost as if to say "This is way too good, I can't stand it!", grinning and giggling the whole time. We took several pictures that day and they are saved on my computer's desktop so they are easily accessible. He asks to see them just about every night, and he nearly has the same reaction each time: it's too good! I must turn away and jump and hide! That's the background.

So about a week ago, he started saying "I love you, Duckett". Completely unprompted. My heart was bursting: with pride & excitement that he could put his feelings into words- unprompted, and breaking that those words weren't for me first. I resolved to remain celebratory about it, and rejoice that he, once again, has proven that the stereotype of individuals with autism not making emotional connections with others is not true - at least for him. He loves and he can say that he does. And that is huge.

I could have felt sorry for myself - and I did for a few moments. But I decided to grab the opportunity, and after a few days said to him: "I love you, T" in my clear, vocal prompting voice. And he said "I love you, Mommy" back to me.

We tested it on Daddy next. Rob: "I love you, T." And T replied: "I love you, Daddy."

8 years, 10 months. We'll take it!!!

Dentist

2010-05-05T22:59:00.001-04:00

This morning, I told T that we were going to the dentist after school, and promised him that Dr. B would be so impressed with him. For the last several months, T has allowed me to use those flosser pic deals to floss his teeth, and I said that Dr. B would be so proud of him for doing so! I said that we were going to show off his wonderful teeth. Little did I know how impressed Dr. B would be with our boy – and how impressed I would be as well! Not only did T allow the dentist to floss between most of his teeth, but he also (with some encouragement & cheering on) allowed him to use the polisher all through his mouth! He still does not want to have anything to do with the actual dentist chair, but he sat just fine in a regular chair, and this dentist is so kind and experienced with our kids that he knew not to push the dentist chair thing. Both he and his dental assistant acknowledged that he made great progress today.

To paraphrase our Vice President (whom I adore), this is a big *bleeping* deal. About two years ago, he would get agitated if I even moved my hand toward the electric toothbrush the dentist suggested we use, let alone touch it or bring it toward his mouth. After several months of work, his Verbal Behavior therapists had him using it comfortably. We've been using an electric toothbrush since then, and I'm sure that being used to the sensation of something vibrating like that made today go as smoothly as it did. Bless his heart, the minute the dentist was done with the cleaning, T looked at me and said "Car", but he tolerated the flossing & quick fluoride treatment as well.

Other moms have told me stories of having to do several thousand dollars' worth of dental work on their child with autism because they simply won't tolerate having their teeth brushed. That adds to the wonder of this day – and the wonderful-ness of this boy!

Such a good day! We went to a party supply store afterwards to pick up things for Rob's graduation party this weekend. I tried to find some small plastic slinkies for him to play with as a reward, but I couldn't find any. No problem: the store had large (like 3 feet wide) pedestal fans going in the store. That is nirvana for T – no better reward than getting to jump and play in front of a huge fan! He earned it.

TV interview

2010-04-29T22:20:00.001-04:00

I was interviewed on camera at work today to comment on a local news story about an 8 year old boy with autism who was restrained in a chair with a belt, double-knotted, in the corner of a classroom. This child had just moved into this school and mom came to the school for his move-in conference. She stopped by to see him, and that was what she found. Her non-verbal son, who would not be able to tell her about what happened at school that day, was tied to a chair and left. Three adults were in the classroom: a teacher and two aides.

This is legal in Indiana.

When we got word at work that an investigative reporter wanted to interview someone from our office to answer the questions of 1) how can this happen? And 2) how could this have been handled better?, the brainpower in that room was electric. Should we take the interview? Shouldn't she be talking to the Department of Education? Do we need a lawyer? What was the situation that led to this? Was he hurting himself or others? Was this a stupid decision by untrained staff? Does he have a Behavior Intervention Plan, and was the new school aware of it?

Thing is, Indiana law allows this. Honestly, as despicable as the thought is of a beloved non-verbal child being restrained, the teachers are put in a no-win situation at times. We don't know the full situation here, but looking at the larger situation, there are children who are flight risks/wanderers, as well as children with extremely challenging behaviors (throwing desks & chairs, destructing property in the classroom). The teacher can't deadbolt a classroom door or put up a baby gate or some other safety barrier because it would break fire codes. Upcoming budget cuts promise – it's been announced – that instructional aides in elementary schools will be cut. Okay, so we can't lock a door or keep a child from bolting out the door, we reduce staff, and there are students that are escape artists or have "behavior issues". Is strapping them to a chair acceptable to keep them from escaping or from injuring another child or staff member? It's legal and it's sickening and it's heartbreaking. The subject of the story hit too close to home: and 8 year old boy, non-verbal, with autism. My son would not be able to tell me if this happened to him. And yet, what are teachers to do without the training and support that is needed? Good luck getting 1:1 aides for your child with these challenges – they are tough to get and again, with budget cuts, schools do not want to commit dollars there.

It's a mess, and my heart breaks.

Turning this to me for a moment, I was SO filled with angst before this interview. I did not feel that I had enough knowledge about Seclusion & Restraint to talk about it in any coherent way. I also feel that I am not good thinking clearly in high pressure situations – I need time to process, to research – and I did not feel at first that I was the right person for this interview. However, as the brainpower session continued, I offered to do it (even though I had initially said I wouldn't.) Despite the terrible subject we were discussing, as I was deciding whether to do this or not, I received the nicest, most genuine compliments from my colleagues. They all thought I was the right person to do this. Nothing disingenuous at all. I began believe them, to think that I really was the right person to do this interview, so I did it. I still was desperate not to say anything that would make our organization look bad, or be an inappropriate statement coming from our organization. Our marketing director sat down with me and was so terrifically helpful – listened to what I would say if that parent had called in, and helped me identify my own talking points. And I did it. So I know that this day, this story was not at all about me. But the process turned out to be so affirming of my abilities and talents. I think I am good at this.

Now to hug T.

Hearts on Fire: Gentleness. My personal statement at church 4/25/2010

2010-04-28T22:50:00.001-04:00

I am a special needs advocate. Let me start by saying that I love this new life of mine. It is not at all what I thought my life was going to be, and it certainly has its heartbreaking & challenging moments. However, through this new life, I see that God is with me every day, working with me, worrying with me, guiding me, and sending angels to help. Serving this population reminds me daily of what is truly important. It is not about acquiring things or being fastest, richest, and most "successful" as our society defines it. It is, however, about love, relationships, and a good dose of justice.

My life BC (before children) was all about music – and particularly my singing career.
I travelled & sang professionally, lived the life of a starving artist, and after Rob & I married, started teaching at the university level. I was living my dream of making a living off of music, and loving it.

Fast forward several years. Our first child has taken his time learning to crawl & walk, is not babbling as expected, and does not play patty-cake. It is our long-anticipated and dreaded "diagnosis day". The child psychologist gently says to us that it is their opinion that he meets the diagnostic criteria for Autistic Disorder and Severe Receptive and Expressive Language Disorder. Time is given for us to process, recommendations are given to us, and we start the long drive home to Bloomington. As thorough and professional as the day has been, at the end of the day, we were sent home with a thick packet of information, an invite to stay in touch if we'd like, and well-wishes. "Good luck", essentially.

I recall the following months & years: so many systems to navigate, so much information out there. I wanted a reliable source of information – someone to guide me. I kept thinking I had all sorts of tire spokes of help but no hub. It's not like you get a diagnosis for your child and they implant a microchip in your brain to know how to deal with insurance & schools, especially while your world has just been rocked to its core and your brain is spinning and grieving.

We moved to Indianapolis almost three years ago. I initially thought "Ah, here is my opportunity to get a vocal studio going again!" And yet, once we moved here, I found any reason I could not to make the phone calls, connections and introductions I knew I needed to in order to be a professional mezzo soprano here in Indianapolis. I didn't want to be a professional musician anymore. But, once I allowed myself to make the unthinkable realization, I felt such freedom & relief. Then the next big question came: so what do you want to do now?

More weeks of pondering, praying. And then it came to me: I remembered that "diagnosis day". And I realized what I wanted to do: I wanted to be the person that went along with that packet of information. I wanted to be the person who would hold a family's hand once they got that diagnosis, and guide them to the help that was out there so no one would have to do this on their own again, like we did.

So I started talking to anyone that had any manner of connection with the special needs world.
I now work at ASK (About Special Kids), a non-profit state-wide organization that directs families of special needs children to the resources and supports that are out there. Any question that a family has, we can help them – free of charge. I love this work. Yes, most of my time is spent listening to heartbreaking stories and the unfair problems that these families have to face. For a majority of the families, I am helping them fight for their child. But I am holding their hand through it, and they do not have to face it alone. There is help. We can make the world a gentler place for these children. It is my ministry. It sets my heart on fire.

Many families with special needs children simply don't go to church because it takes real work to have their child participate or even be present in Sunday school or in a worship service. Our experience here at North has been such a lesson in acceptance, diligence & willingness to make this work. On our first Sunday visiting here, when we got to Miss Dana's kindergarten classroom, we took a deep breath, and started in on our mantra, explaining how our child Thomas has autism, and that means….and Dana looked at us, smiled and said "I've been teaching special ed for 20 years." Moments later we were here in the worship service, our hearts at ease, knowing that he was well looked-after for that hour. And we could have an hour in church, an hour to restore & rejuvenate, be present with God, and gather the strength for the week ahead. Last January, Janet called us to start the planning & discussion about moving Thomas up to the 1^st grade Godly Play classroom that following August because she wanted to make sure that they were prepared for him and could provide an environment that would work for him. She beat me to this! That is a stunner. I applaud North's Radical Hospitality initiative and pray that we will all move forward with this, especially welcoming those with special needs and developmental disabilities and their families. What a gift to have a place that is loving and accepting, especially in this world that is not particularly gentle.

These children, (who will grow into adults) require a gentle world. Many times, it simply would be easier just to stay home and hide. But we cannot. Because these children – my son included – have so many gifts to offer this world. I know this because the pe ople who have taken the time to let my son into their heart and get to know him, feel better around him. There is nothing like his smile, his laughter, and his eye contact. It is at these times that I truly believe that I am seeing God. God in action, God through him, God in him. God in these children, in these people. I am so thankful to this church for being a place of gentleness for Thomas.

It is what we have found so far at this church, and what we hope can be offered to even more children & adults with special needs & developmental disabilities here in this place, among these people.

Doctor’s visit tomorrow

2010-04-28T22:48:00.001-04:00

We go see T's "DAN" (Defeat Autism Now) doctor tomorrow. It's been a couple of different months for us, and I'm a little anxious about this appointment, honestly. I'm so darn concerned about pleasing people and not disappointing them…so it will be interesting to tell her that we stopped ALL of his supplements for a while this winter, and we haven't brought him in to do the fasting blood work she requested two visits ago. She wants to get him back on the prescription chelator (to detox him), and this blood work she wants needs to happen when he's not eaten. I fully admit I've dug my heels in on taking him in. Nope – didn't wanna do it. How hard does this all have to be? The regular tests weren't good enough? Honestly, how long will my brain allow this: we can only do certain tests from certain labs, and the labwork that's done in most other labs isn't going to find what we're looking for…and voila! The special labs found a problem when the regular labs didn't! Stunning. Really? Yep, turning into a skeptic. Anyway, we've been at this so long now that I just wasn't sure if they were helping. The expense is beginning to weigh on my mind – I'd pay just about anything to keep a supplement going if I knew it was helping, but without any evidence, I was beginning to doubt.

That's the double edged sword of the biomed world of autism. You get your hopes up again, and once again, autism isn't defeated.

So the supplements stopped, and we did see a difference – and one we didn't like. Grumpier. Not too playful. Where did our smiley guy go? Heaving a heavy sigh, we slowly reintroduce the supplements one by one. The good thing is that I can now say, without a doubt, that a few of them truly do make a difference for him. This is good, regardless of my skepticism. Probiotics (Threelac, specifically) and Cortrex (adrenal support) – big bangs for our buck. The others are pretty basic – Vitamin C, Vitamin D – so those will stay. And we've started another one – but haven't seen any change yet.

Sometimes this feels like I'm a cat trying to catch the elusive laser point dot on the ground, then the wall, then back to the ground…all the time the person holding the laser pointer is laughing because IT CAN'T BE CAUGHT.

Having said all this, since we reintroduced some of these supplements, he's been one happy guy. I know how blessed I am to be his Mama, and how lucky we are when I read & see what other parents who have a child with this diagnosis have on their plate. T is healthy & happy, gentle & funloving. He's doing well with the 2 half-days/week in the public school's TEACCH classroom, and continues to progress with the 30+ hours/week he gets of ABA: Verbal Behavior. We're in a good groove, and it feels good.

From #2 to #1

2010-02-03T21:14:00.002-05:00

The "fecal smearing", as professionals appear to call this behavior, seems to have been a short-lived fascination. Not long after my last post, I found T starting to smear his poop again. Boy, did I make a big impression on him that time. I slammed a book I had in my hand down on the bathroom counter and yelled "NO WAY. We are not doing this. You do not play with your poop. That makes your hands dirty and messy and it is not clean or safe." He looked so stunned, and immediately started crying. So I knelt down next to him while cleaning his hands and said, "I'm your Mommy, and it is my job to make sure that you are clean and healthy and safe - and THEN happy. I know it makes you happy to play with your poop, but you aren't clean when you do and you won't be healthy for long if you do. So you can't play with your poop anymore." He continued to cry, and I felt awful for making him cry, but also felt completely justified in my reaction - at first. Then of course I started doubting - should I have just ignored the behavior and tried to replace it with something else? But darn it, this was such a visceral reaction, and darned if it didn't make an impression. It has been several weeks and he has not played with his poop since.

And, as the trusted professionals with whom I consulted on this said: I rarely if ever yell at him. So even though most of the time we do want to ignore the bad and reinforce the good, sometimes the gut-felt, honest response works best.

But...we've regressed in the peeing area now. I truly don't know if it is due to the amazing growth spurt this kid has been on for the past 2 months, or if it is one of the two supplements we've weaned out of his daily menu, or if I traumatized him by the aforementioned incident and now pottying is aversive. Thing is, I won't know, either. But I am glad to report that we are now three days (almost) completely accident free. Thank goodness for M&Ms. We've gone back to rewarding dry underpants and it seems to be working. Hey, I'd work for chocolate treats, too.

His cold (nearly three weeks into it now) seems to be fading. I suppose that his system could be off due to that as well. Never a dull moment. Certainly is making me very good at hypothesizing!

Worried.

2010-01-09T14:52:00.000-05:00

I’m feeling so very low right now.
I realize that so much of my personal feelings of satisfaction & contentment come from when Thomas is doing well. This could be dangerous, I suppose. Probably is. But when he’s our only child, and as I’ve said to people lately, we’ve put all our eggs in one basket there, it’s difficult not to feel terrific when he’s doing well, and feeling like shit when he’s not.
He’s started playing with his feces. Okay, his shit. There. I said it. It’s so upsetting I can hardly think clearly.
He’s been doing so well with potty training – even was dry for several weeks overnight. He was sleeping in underwear and was dry in the morning. But that ended over the Christmas break, and I’m hoping that once we’re truly back in the swing of a routine, it will go back to the way it was. But he’s even peeing through the overnight diaper, meaning that we have to wash his sheets and underwear & jammies almost every night. He even had a peeing accident last night while watching a video. Add on to this the new totally disgusting and disturbing activity of playing w/ the toilet water and poop, and I’m in despair. We think what he does is put one of his fingers up his anus when he’s in the bathroom by himself and pooping, and then smearing it on his shirt or legs. I even found it in his hair once.
So the obvious remedy is not to leave him alone in the bathroom. This is easier said than done, and so disappointing and frustrating since he’s been poop-trained for almost two years now. Back to endless time sitting in the bathroom with him.
Plus, it’s just disturbing, this new activity. It shows such a lack of…I don’t even know how to put it. People who care about wanting to be liked do not spread shit on themselves. Mental disturbance? Cognitive dysfunction? Psychosis? I could just cry thinking about it. What’s happening? He never did this as a small child – never. And I was so glad that he didn’t. Why now? What triggered this? Is it just that it feels cool to stick your finger up there? And he can hardly help himself around water – he could just be playing in the toilet water because he likes playing in any manner of water, but EEEWW. YUCK.
My poor boy. Now what? Are we entering into a very dark time for him? Do other more serious diagnoses or problems face us?

Good night, Goodnights?

2009-11-17T22:29:00.002-05:00

I don’t want to jinx anything, but…it in the past two weeks (maybe more) T has had only one accident overnight. Other than that one time, he has been dry every morning. He's even been sleeping in underwear.

Could it be?

Are our days of buying diapers over?

Got the vaccine

2009-11-17T22:19:00.002-05:00

Our county has decided to use their H1N1 vaccine supply by inocculating all the school children at their schools (whose parents have signed a release form, of course). I took them up on their offer, and T got the nasal flu mist today. He is in good spirits tonight, happy & a little tired, but earlier this afternoon, he quickly spiked a temperature of 100 degrees - but then it came down to normal w/in 90 minutes. They didn't even call me to come get him because it came & went so quickly. I'm feeling very relieved, but will still watch carefully for the next few days.

I told Rob last night that I felt like, with this decision, I was stepping off a path we've been on for 4 years and headed down a new path. Because of that, I have been feeling anxious about it. But I also have calmed myself by remembering that so much information has come to me this year about vaccines and their safety (or at least the other side of the story)...I have to believe that there was a reason for that shift, and maybe it was to prepare me to help make this decision to get the H1N1 vaccine for him. And relying on T as the best data & research we've got (and he's never reacted badly to any vaccine), we did it.

Now we wait for any reaction.

I think it is going to be fine.

H1N1 vaccine decision

2009-11-03T14:30:00.001-05:00

We’re going to get T that vaccination. I’ve struggled with this decision for awhile, but Rob & I are in agreement. The final clincher came to me when I thought back on this year…attending the conference where I head Paul Offit speak, doing research on both the pros and cons of vaccinations, weighing our options and looking back at T’s experience w/ getting his vaccinations…and I thought that perhaps this is why all this pro-vaccine information came into my life this year. I was being prepared to make this decision. T has never had an adverse reaction to vaccines. He is fully vaccinated. He didn’t regress. And I’ve heard enough about the high-risk populations – he’s in two: 1) he’s under age 24 and 2) he is developmentally delayed and might have some neurological challenges. And I’ve also heard enough about dead kids.

I can deal with side effects. Hell, we’re already dealing w/ autism, if that’s what everyone’s scared of. But I don’t want to deal with dead.

But here’s the caveat: if at all possible, I don’t want him getting the vaccine with thimerosol. Research has exonerated this preservative, but I’m still not jumping up & down with glee over the prospect of injecting him with it. I was able to find a thimerosol-free injection for his seasonal flu shot, now I just need to track one down for H1N1. Wish me luck and good timing – it will probably have to be a “right place at the right time” sort of situation.

Now we just need to find a vaccine. Our county has held a few huge clinics – thousands of people lined up for hours – and I have not taken him to any of those. Yeah, standing line for hours with a child who has trouble holding still and exposing ourselves to all the germs that those thousands of people surely would bring…and then there would be no guarantee that he’d get a thimerosol-free version…nope…not signing up for that. So I’m praying for a calm, stress-free opportunity to get him either the nasal spray version or the single-dose injection.

Fingers crossed.

Birthday Party fun

2009-07-21T21:16:00.001-04:00

T was invited to a friend's birthday party this past weekend. These invites are few and far between in our life, so I was pleased to take him…although I experienced a little trepidation because they are usually crowded, over stimulating experiences for him. Sometimes I wonder if it really is fun for him to go or if it is just something that I want for him. This birthday party was different.

This child's family had rented an indoor sport facility that had 3 large bounce houses ready to go. It combined "typpies" (typically developing children) and some fellow classmates from the Verbal Behavior clinic. The party was two hours long and included no official organized events - just playing in the bounce houses and eating pizza & cupcakes. T LOVES bounce houses of all sorts, and this day he even climbed in and around a big inflatable that had hoops to crawl through, poles to dodge and a slide to climb up and slide down. He had a terrific time on this, and even giggled when a little girl saw that he was taking his time on the top of the slide and started playfully pulling his leg to get him to come down. Let me emphasize that…laughing
with a peer. He had a huge smile on his face as he came sliding down.

Some of the therapists from the Verbal Behavior clinic also came. It was so wonderful to see one particular former therapist of T's play with him on her own time (once again, I am so tremendously moved and thankful for these incredible people in his life). When it was time for pizza, I went into my usual routine of getting T's food for him and having him sit with me. This therapist joined us at the table just in time for me to see that all the other kids were sitting together at little tables in their own little kids' area. So I asked T: "Do you want to eat here, or with the other kids?" He replied: "I want kids."

He wanted kids!!!! He chose to eat with other kids!!!! So he did. Word spread quickly among the therapists that he had chosen to eat with the other kids, and while they all recognized that this was tremendously cool, they confessed they were a little bummed that they weren't cool enough to hang out with. I grinned in acknowledgement, knowing that if we all do our jobs correctly, he will eventually "break our hearts" by not needing us anymore. And that's the goal – that's what we're striving for.

My little guy turns 8 in two days. Time is going so quickly. I can honestly say that I'm enjoying this time in our lives together so much right now…I don't want it to change, I want him to stay little and happy and loving his mommy…and yet again, I know that if I do my job correctly, he won't need me as much and I'll need to take my joy by watching him soar. And that is my prayer.

After lunch, he went back to playing. He grabbed a basketball, dribbled the ball with two hands while walking, and tried shooting some baskets into a regulation basketball hoop.

I believe he'll make those shots someday.

Our music (little) man

2009-06-18T20:59:00.001-04:00

He's playing piano again! A few years ago he stunned us all by picking out the tunes of "Twinkle, Twinkle Little Star", "Mary had a little Lamb" and even "Happy Birthday" on the piano. So, playing it cool, we quickly got him piano lessons, and he promptly ignored the piano for at least 18 months. So much for finding his bliss for him. I got a view of how easy it would be to become Helicopter Parents, and just how he'd respond to that.

But he's now playing again and we've learned our lesson. This time we truly are playing it cool and not even going in the room when he plays. And what are we hearing? The warm-ups I teach/taught my voice students; major chords in several different keys, sometimes with both hands contributing; and most stunningly: "Sunrise, Sunset" from Fiddler on the Roof (which I am currently teaching to a new voice student). Not only is he playing, but occasionally he will SING ALONG.

It's about the most miraculous thing I've ever heard. I just vibrate with happiness and joy when I hear him sing. And on top of all this, he's singing with my voice student as well! Good thing it's one of his therapists, who takes great delight and joy in the unexpected duet.

Miracle at the library

2009-05-18T19:54:00.003-04:00

I took T to the library Friday afternoon. He enjoys going because he can sit at one of several children's computer stations and watch the screen do cool things. Several times I have attempted to show T how the game works (if I can figure it out myself!), but he has taken to gently pushing me away and saying "I'll be right back", which in T translates as "Go away." J (He wants me to say "I'll be right back" and then leave, so he prompts me by saying it to me first. Brilliant reasoning, I must admit.)

Note: he has not ever played any computer games other than cause-and-effect games – press a key and something happens – and he hasn't shown interest in those in about a year. We've tried to show him how to point & click with a mouse and move it around, but until Friday, he never indicated that he caught on or showed any interest. Just sitting and watching.

There was a new game on his favorite computer, which looked pretty cool. It was a shape-matching game, and required no clicking of the mouse at all. You just swiped the curser over the shape at the bottom of the screen – which "picked up" the shape – and then you slid it over the matching shape at the top of the screen. I showed T how do to this; he replied by saying "I'll be right back", and I obliged. I came back after a few minutes AND HE WAS PLAYING THE GAME BY HIMSELF.

I didn't know whether to jump for joy or cry or play cool or what. So I stood there in disbelief, jaw dropped, hand to my mouth, in sheer and utter amazement. I then went over to the resource librarian's desk and asked what software was on the children's computers. At first, she seemed a little defensive or annoyed, but I explained that I was witnessing a minor miracle from my autistic son – that he was playing a computer game for the first time all by himself. Well, she was pretty excited about that and was calling everywhere to find out what the program was. She first asked if I could close out the game so we could find out what it was, and I said "Um, I'm not really wanting to interrupt this!" and then she realized how silly that was. After a few phone calls, she had gathered every possible bit of identifying information she could (such a good librarian!) so that I could order it for him. Then she said that this was worthy of notation in their log, and happily went on her way to document the miracle.

Then I stood there in awe. I called Rob to share the moment. He was stunned too. Not that we didn't think that he couldn't do it someday – we knew he could – but playing computer games was yet another way that we got to see just how different typically developing children are from him. Kids his age are computer whizzes. I watch his cousins maneuver the Webkins website and am completely amazed (brilliance in all its different forms runs in the family). But Friday, getting to watch him play this game was like witnessing a miracle. Once again we have proof that he is capable of learning challenging tasks. Every skill he gains is another step toward an independent life. I saw into the future and he was at a desk doing computer work. I've dreamt it, but the dream became more of a vision of possible reality today.

It was a magnificent day. You go, T.

“Does he have issues? Cool.”

2009-05-10T20:06:00.001-04:00

Children have provided us with some of the best questions about T, and today was no exception. We took him to the playground at his elementary school this afternoon because the city park where we usually go was packed with other families celebrating Mother's Day. There were some other children playing there, who greeted us upon our arrival. One of T's favorite things to do at a playground is climb the stairs all the way up to the tip-top of the curvy slide, sit at the top, and enjoy the view. Only occasionally will he slide down, but today was not one of the days he was feeling it. Thankfully, the other children were very busy with other parts of the jungle gym and it really didn't matter how long T sat up there. After a while, one of the girls came over our way and went up to the top of the same slide, a basketball in hand. She put it down, and T efficiently pushed it down the slide. We weren't sure if that was what she intended – probably not – but we retrieved it for her and she slid down after T made room for her. She chatted with us in that curious way a child on a playground will, asking when his birthday was. It turned out that she and T have the same birth month, which she thought was cool. Turns out she is just a few weeks older than T & goes to this same school. I told her that he comes here also on Friday afternoons. She was quiet for a moment, and then asked quite simply: "Does he have issues?" Rob & I grinned, and said that yes, he does have issues. I told her that he is in Mrs. E's class (the self-contained special education classroom), and her honest & straightforward reply was "Cool. Her class comes to our class sometimes and hangs out with us."

"Cool." It is just fine with her that he is different. I have to say that kids impress the hell out of me sometimes. It really shouldn't surprise me – I mean, the kids in this school grow up with the most impacted special education students in their own school, coming to their classrooms as they are able, and it is NORMAL for them. This question from this young girl follows the great question I got from another little boy at this school: "Is he artistic?" And again, when I said yes (with a grin), his response was "Cool. I have a friend who is artistic."

Moments like this make me want him at this school more frequently than one half day a week. I'm SO thankful that this school will be ready for him when he is ready for it, and I can't wait.

I honestly can't remember any interactions I had with any special education students in my public school career. Where were they? It certainly was a different time.

Packing List

2009-04-09T21:23:00.001-04:00

I just had to update T's packing list today. Off the list came:

Pull Ups
Swim diapers
Special foods
Honey (leftover from SCD diet)
Petroleum jelly & Desitin
Pull Ups for diaper bag
Bed rail

How far we've come. Woohoo!

We've told T that we're visiting relatives this weekend, and he has been saying all their names repeatedly all day yesterday and today. A shocker tonight: he named their previous dog, whose name we haven't mentioned in MONTHS! We met this dog Memorial Day weekend last year, but haven't talked about him in ages. And suddenly, there was T naming this dog. He really listens and retains language now…we have increased evidence of this every day, and I continue to stand in awe of this little guy. What else do you have going on in there, buddy? Can't wait to find out.

Excited to pray

2009-03-24T20:35:00.001-04:00

Two nights a week, I put T to bed. Rob usually does the evening duties, but it is fun to have the chance to say goodnight to him and get nighttime snuggles before he drifts off to sleep. T likes to stick to routines – no surprise there – but Rob & I have managed to put our own spin on the evening bath time & reading routines. So from very early on I've sung a lullaby to him, and when I realized he was able to finish sentences, I taught him a little prayer as well. It is so very cute to hear his little voice finish each phrase and I love to hear it. Even so, I had gotten out of the routine because he likes to have three books read to him at bedtime, and by the time we are done with those, lately I've let the lullaby and prayer slip. But tonight I remembered to do them, and he was so happy! I started singing the lullaby and the biggest, most pleased grin spread across his face. When I started the prayer, his little fingers started rolling & strumming and he kicked his legs under the covers, vibrating all around – he was SO EXCITED to pray.

I happily went through our bedtime prayer – twice, even – thinking that I could learn a lesson from him about being excited to pray.

The last words of our prayer are "every day". Tonight, he repeated it to me. I said it back, and added that I love him every day, and every minute of every day. Then I said that I know he loves me, too. He looked at me intently, grinned, and said again "every day." "Yes, everyday. I love you every day. And you love me, too."

Every day.

Life is good

2009-03-15T22:06:00.001-04:00

It's been awhile since I've posted. This is primarily due to two over-riding facts: 1) I'm so busy with everyday life and 2) T is really doing very well. We're in a nice groove lately and it feels good. He continues to impress us with how much he understands spoken language. He has gained so much confidence in using words – it's terrific. The biggest change I've witnessed was from last spring's Motor Activity Clinic to this year's. He bonded right away with the college student assigned to him, and stuck with him throughout the two hour time period. They went in the pool together and the student (I'll call him J) got him to let his legs float out behind him and kick right away on the first day – last year it took weeks. (T prefers the Wrap Arms & Legs Around Person In Pool With You technique, so this was no small matter.) And during the hour of gym time, they moved between about 15 different activities – no eagle shrieks, no protesting – T just went with his new buddy J wherever J took him. No trouble whatsoever transitioning between activities - it was SO cool. About an hour & 45 minutes into the 2 hour session, T saw me, walked toward me and said "Mommy's car." Okay, he'd had enough and was tired. But even there, that communication was terrific: There's Mommy, and I'm ready to be done with this, so I want to go to Mommy's car now. But he was excited to go back the next week, even saying "pool" repeatedly on the drive downtown.

Side note: I have to say that I love his new speech. No, it is not typical – and I couldn't care less. It WORKS and it's CLEAR and I love it. When he wants to leave, he'll say "Mommy's car". When he wants to be left alone, he'll say "I'll be right back" (which is what I say to him each time I go in the bathroom to see if he's done sitting on the toilet and he's not done – he's transferred that phrase to me going away, so now he has a way to say "go away". Awesome!

Did I mention that he's potty trained? I think it is safe to say that we are there. He is potty trained. I pause here to recognize just how monumental that statement is. I think I've never been as close to panic and despair as I was all those months and years I put in sitting in the bathroom with him, hoping and praying that he'd someday poop in the toilet. It started mere days before his 7^th birthday – his first poop in the potty – and he became more & more consistent until after a few months, pooping in the toilet consistently was no longer an issue – it was his habit and something he wanted to do. The next hurdle was getting him to tell us when he needed to pee. That took a little more work, but it was nothing compared to the years of work I put in encouraging him to poop. Then it was Pull Ups only for horseback riding and other longer excursions. No more. He's in big boy underwear 100% of the time during the day – diapers only overnight, and I can live with that! I'm so proud of him, and SO relieved. It's a freedom moment for mommy, too. He still tells us when he needs to go and we take him to the bathroom, but then he does it all by himself. Pretty soon he'll be completely independent, and I am filled with thankfulness and pride for all the hard work he's done.

I'll post another time about his new cranio-sacral therapist. She is a true gift to him and to us. She is in awe of him and loves working with him – and both Rob & I feel the same way about her.

My job is good. Work environment terrific, colleagues amazing. What's more: I come home every day knowing I've helped a fellow family with a special needs child. Rob's making good progress on his dissertation. And honestly, in this economy, we are thankful for having our home and for being able to provide for ourselves.

I'm kinda waiting for the other shoe to drop – have been for several months. Guess that's the expected side effect of years of trauma and angst. But the constant state of emotionally looking over my shoulder seems to be dissipating. I'm enjoying a lull from drama. It's all good. I better not regret typing that.

Another side note: Rob & I started brainstorming about writing an article on the emotional development or identity development of the special needs parent. In all our spare time. Hah.

It’s ugly out there

2009-02-24T20:35:00.001-05:00

I live suspended between two realities. One world: at home and in our world of therapy clinics and loving people who dedicate their lives to working with children with special needs. Once through the heartache, this can be a beautiful place to be. (Recall the Welcome to Holland poem?)

The other world: one where a student with autism gets tazered by a police officer at school because 1) the school didn't follow the legally binding behavior plan that was in place and called the police when the student had a melt-down and 2) the officer that was dispatched didn't have training in how to deal with people with autism. This is the same world where a student on the spectrum was hit and killed by a bus at school because he was dropped off in the parking lot and had to walk through parked cars into a driving lane of oncoming traffic. Both of these horrible events have happened in my city in recent days.

I live suspended between having so much hope for our T's future and being so completely frightened by the world that doesn't understand him. It's an especially dangerous world for him, and it's ugly out there.

I will choose to continue to "look to the light, and keep looking there because there's way too much darkness" (a quote from a parent mentor, 80+ years old with a 50+ year old autistic son.) I must.

Christmas 2009

2009-01-14T21:11:00.001-05:00

This Christmas was noteworthy. For the first time, T spent almost the entirety of Christmas Day with us. Now, this is no small matter - for several reasons. First, my family does Christmas the slow way: we open presents one at a time, and appropriately Oooh and Aaah over each one, try it on, play with it, hear the story of why it was purchased, etc. This only happens after we have been thoroughly breakfast-ed and coffee-d, much to my dismay as a child (because coffee takes so long to drink and everyone has to have several cups of it and there are PRESENTS OUT THERE, for crying out loud!) Then of course there are the eggnog breaks, and several timeouts for more coffeecake or cookies as the day rolls on. This Christmas was no different – the Opening of Presents started mid-morning and went well into mid-afternoon – and T sat with us almost all day. It helped that many of his presents were of great interest to him - toys that spun or whirred or ran down a track – but doggone it; there he was, right with us.

In previous years, he wouldn't be with us at all. He would only come join us in the room with the big tree and all the presents and wrapping paper when prompted, and opening a gift…well, that just wasn't something that came naturally. (A prime example of how our kiddo did not, until recently, learn from watching others' behavior and imitating it – EVERYTHING had to be taught to him step by step, and still does.) So there were always these stinging moments in previous Christmas mornings: a special gift from a family member would be presented to T all wrapped in pretty paper, and he'd just be staring off into nowhere in particular with the present in his lap – then I'd take his hands, limp as could be, and try to show him how to find an edge on the wrapping paper and start tearing, none of which he seemed to understand or be interested in, and once it was opened, it was usually ignored. Most of his Christmas day was spent in a separate room, watching videos while we opened presents. Another situation of the balancing act Rob & I live: joy and sorrow all wrapped up in the same moment. Joy at Christmas morning with my family around; sorrow that our son wasn't able to participate. I always hoped that someday he'd get it.

This year, he was much more aware of what was going on, and while we still had to pick up a gift and put it in his lap, he knew to rip the wrapping paper to open the present. Once opened, he played with the toy. SO majorly huge – and so different from even last year! He even seemed to get that Santa was one really cool dude. Quite often during the season, if he'd see a picture of Santa, he'd get very excited, smile at me with a HUGE grin and say "Santa!!!" And we haven't even played up the whole Santa thing at all! He MUST be picking up on these things by LISTENING and COMPREHENDING – much more so than previously.

I have learned from previous Januarys not to say "I think it's going to be a good year." So I'm not saying it. But…progress is happening. T is learning. This is ALL good.

“Coat Off” and “Ezra Black Keats”

2009-01-14T20:46:00.001-05:00

It's been a while since I've posted, and I'm quite thankful to report that the echoing of my name has vanished, for those of you who have asked. Thanks for checking in.

We continue with the intense Verbal Behavior therapy 32 hours/week, the Methyl B-12 injections and the detox-ing, and we also continue to see slow but steady improvements in behavior as well as expressive and receptive language skills. It is SO totally cool. Two very fun things came out of T's mouth today which I just had to share.

First: T has been able to request and label the action "coat off" for quite some time. This winter, he has a new coat which not only zips up but Velcro-s shut as well (fancy coat!) T is not yet able to open up the Velcro to access the zipper. Each time he wants to take off his coat, he'll look at me, reach to my hands and say "coat off." Today, because it is so blasted COLD, I switched up the usual coming-home routine by taking Chester outside before I had taken my coat off and had assisted T with his. I usually throw a frizbee to Chester, since he's been home all day without us around, so I took a few moments to play with him. After about a minute, T opened the back screen door, peeked around at me with his coat still on, and said "Coat off!" It was such a TYPICAL kid moment…as if to say "Hey Mom, you forgot something!" I laughed and came inside to help, and gave him a big hug for using words to ask me for help.

Second: Rob has been terrific about telling T the author and illustrator of the children's books he reads to him. T can now name the author of the small library of books he will allow us to read to him – very cool. One of his favorites from a few years ago, The Snowy Day by Ezra Jack Keats had been, until recently, shunned from his list of Allowable Reads. I'm glad to report that is has now been deemed acceptable to read it to him again. He likes it so much again that the author has become part of his echolalic repertoire, but with a fun, sweet and decidedly appropriate twist: he says "Ezra Black Keats". Gently, I try to correct him, but he is convinced, it's stuck, and now when we walk around the grocery or are on other errands, he'll flip his fingers and say "Ezra Black Keats." I just have to smile.

"Suzanne"

2008-10-20T15:02:00.002-04:00

I’ve written here before about fun echoics T has said, such as:

Therapist: “You eat with a…”
T: “Shovel”
…and I do have to report a new one from last week:
Radio: “This is NPR news…”
T: “...in Washington.”

Great fun, and a super party trick. However, a new echoic showed up last night, and I’m having a very different reaction to it. He’s heard people call me by name all his life, and yesterday, T started echoing “Suzanne.” I’ll admit it was funny at first, hearing my son say my given name. But this morning, as he was sitting at the table eating breakfast, he said “Suzanne. Suzanne. Suzanne,” over and over, doing his little finger flap thing. I know it was just a stim. But it really got to me. It broke my heart. This is the one child in the world that may ever call me “Mama” - and he only says it when prompted - but there he was, saying my given name over and over and over again and it meant nothing. AND I couldn’t respond. I ignored it – I had to – because I certainly do not want him to start calling me by name, which very well might happen if I give him a big reaction.

I got really angry, too. Every repetition of my name made the anger rise higher. Stop saying my name. I’m your mother. I am not Suzanne to you. I am your Mama. I have put so much time and energy and life blood into you, and I’m standing here ignoring you because you are saying my given name, because if I react, you will continue to do this. And the hell of it is, you don’t even realize what you are doing. It’s a meaningless stim. But it’s killing me. Do you know how much I ache for you to say “Mama” when you want me? How much I want you to cry out for me in the night when you are sick or scared? How on the few nights when you are able to say “Night night, Mama” unprompted (even though it is within the context of a very routine event every night), my heart leaps with joy? Every “Suzanne” was like a knife in my heart.

He never saw a bit of my heartache & anger. Had to swallow it and go on. I just had to outwardly let it go and go about my morning routine.

More emotions

2008-09-27T17:25:00.001-04:00

So here we are, a few weeks into the whole detox (chelation) thing. A fellow mom from school asked me if I had noticed anything different – certainly a fair question. We are turning out to be the test run for a few other families at T's school – everyone is nervous about chelation – so naturally, they really want to know how T is doing. As with so many of these interventions, we have not seen immediate, remarkable results (i.e. "I took gluten out of my kid's diet and he started talking in full sentences the next day!!!") (I just want to smack those parents who have that result. Not very charitable, but honest.) But what we have seen is, for lack of a better way to describe it, that his brain synapses seem to be firing better. More connections, more requests, more intentional eye contact (i.e. "Can I?" expression that he has) and interestingly enough, he seems at times to be more emotional. Today was a great example.

He has overly sensitive ears, so things like disposals in the kitchen sink really hurt his ears and scare him. When I need to use it, I give him fair warning ("Okay T, loud noise") and he'll cover his ears and say "Turn it off!" when I do turn it on. But usually, that's that – it's not any big dramatic thing. Not today. We went through the usual routine, and after I turned it off, he looked at me, the lower lip started going, tears welled up in his eyes, and he started crying. And here's one heartbreaking aspect of T's autism – you can't console him. He doesn't want to be held – it just makes things worse…usually. So, I knelt down in front of him, took him by the hips so as not to overwhelm him, and said "Oh T, I'm so sorry. I didn't mean to scare you." He backed up a bit and hit the top of my head with his hands (it was gentle, but nonetheless a definite "you pissed me off" hit.) Side note: I don't outwardly condone his new little bursts of temper when he hits things in reaction to being angry or thwarted, but inwardly, I'm cheering him on. It's SO neurotypical! You go kid!!!) So I didn't react – a skill I've learned from his Verbal Behavior therapy – and then was completely surprised by his next action: he put his arms around my neck and HUGGED me. I put him on my knee and hugged him right back, and there we stayed for a full two minutes or so – hugging each other. He continued to cry on my shoulder…again…so neurotypical…and I held him and took it all in. His sobs calmed after a bit, but he was still holding on to me so I kept on hugging him, and didn't ever want to let go. My son was consoled by my embrace.

A God Moment.

When he was calm, he pulled away gently and said "Tissue" so he could wipe his nose. He did, and then went on his way.

We may never know if these developments are due to the chelation or just normal human development. What matters is that it's happening. I'll take it either way.

“Juice.”

2008-09-13T15:53:00.001-04:00

Yesterday, we took T to a Parents Night Out program at our local therapy clinic. Trained volunteers hang out with our kiddos at the clinic on a Friday night while the parents get to have a few hours to themselves. (We took the opportunity to see the new Coen brothers film "Burn After Reading" – hilarious to see George Clooney and Brad Pitt doing their goofy thing that they do really, really well. Definite thumbs up!) When we came back to pick up Thomas, he was happily sitting at a little table, munching on pretzel sticks with a big cup of juice nearby, watching the move "Cars". Very cute. But the amazing thing this particular evening was what happened next: we told him it was time to go to the car & go home, so we started toward the elevator. He stopped, looked right at us, and said "Juice." We had just tossed some leftover juice, so we were a little surprised, thinking that he was requesting juice. We asked him if he wanted some juice, and he continued the eye contact. He then started walking toward the therapy gym quite intently, then seeing us following him, took off running. We followed, entertained and curious, thinking that perhaps there were juice boxes in the gym or something. Oh no. He opened the door to the gym, walked in, picked up the empty cup that he brought with him from home, and brought it out with him. He remembered that he brought his cup with him, had left it in the gym, and went back to get it.

Can we talk about how many cognitive steps that had to take? 1) Remember that you brought a cup from home. 2) Know that you should bring it home with you. 3) Look parents in the eye. 4) Say "juice". 5) Remember where you left it. 6) Look at parents again to get them to follow you. 7) Run to where you left it. 8) Open door to gym by oneself. 9) Find cup. 10) Carry back to car.

AWESOME night!!! Way to go, little man.

My concern for Palin

2008-09-06T15:25:00.002-04:00

This will be my last post on this subject. This woman's candidacy has been on my mind so much since her speech Wednesday night. She gave a terrific speech, and I say that despite my own political leanings. Part of me was so happy to see Trig up there with the rest of her family. A beautiful and much doted-over DS baby for the whole world to see – not hidden from sight, but included and rejoiced over. And when she promised to be a friend and advocate for special needs families in Washington, and the whole Republican house roared with approval, I was quite moved, I admit. (I hope they all will roar with approval when appropriations bills come through with requests for increased funds for research, providing wider opportunities for affordable health care & services, passing federal mandates for insurance coverage for thes kiddos, etc.) And yet, there is a "But…" to this. I've thought about what troubles me, and I have finally put my finger on it. And I will say that it is probably the first time that I will openly judge another person's actions ( I feel I have earned that right because I have walked in the steps she's about to tread), and this opinion may be, in the opinion of others, politically incorrect. That's okay with me. It is what I believe, and that's that.

I would never have made the same decision she did to accept the nomination for the Vice Presidency at his time in Trig's life. Period. I cannot understand a mother who knowingly chooses career over caring for her 4 month old special needs child herself. A child that she carried for nine months, a child who most surely will need major heart surgery in the coming months or years. A child who will require hours upon hours of therapies, day after day, week after week, month after month, year after year. A child whom she will worry about, cry over, rejoice over every milestone met no matter how delayed, and to dedicate her life to. I know, because I am a special needs mom. And I also know because I speak with other special needs moms every day at my place of employment: moms who are fighting for every last little right to attend public school appropriately, to find health care that will cover the child's condition and keeping that policy, for services & therapies, for a place in society. She feels she can do it all, probably because she & her husband are already raising four other children. BUT…this is unchartered territory for her and her husband. Yes, they've had 4 other children, and they appear to be wonderful, healthy children, and I am so thankful for Trig that he's been born into a family with lots of siblings who surely will be changed by his presence in their lives, and they will be the better for it. (How cute was the moment during mommy's speech when the young sister, holding him on her little lap, licked her hand and smoothed out his hair? Priceless.) So terrific – he's got siblings to surround & love him. But back to her decision: I do not support her decision to accept the VP nomination at this time.

Trig is 4 months old. I so completely applaud her for choosing to see the pregnancy through. But she & her husband have only begun this journey. I'm sure Trig is different already from her other four babies at this time, but the differences will only become more and more dramatic as the coming months progress. They may have been told what to expect, but nothing fully prepares you for what life is like with a special needs child. You have to live it to understand the time commitment, the physical and especially the emotional exhaustion, and at the same time, the immeasurable joy they will feel at progress made. She was absolutely right when she said that special needs children provoke a special kind of love. Absolutely. And she & her husband are only 4 months into it. Imagine the special kind of love when you are a year into it, two years, three years…and you've put in the time and sweat and tears. Mama Bear (or should I say Pit Bull?) protection and desperation comes with it. Sacrifice. There is always sacrifice on the family's part when there is a special needs child. There is joy and sorrow in that. I don't see sacrifice here. I see choosing career advancement over personally investing in Trig's life.

Rob asked me understandable questions: "What if this was a man with a 4 month old?" Okay, this is where some may think I'm sexist, and this may be the first and only opinion I have that may be construed as sexist or politically incorrect. Mothers and fathers, women and men, are DIFFERENT, folks. That's not to say that sometimes the typical gender roles switch and it works successfully and to everyone's advantage. But I would NOT have had as much of a problem with a father of a 4 month old choosing to accept the offer of VP running mate. Note that I italicized "as much." I would have had a problem with it, but not as much as I do with a mother agreeing to it. This is absolutely informed by my personal experience of having been there and done that. I will comment more on that when I get to Rob's next question:

"Are you saying that a man can't raise a child?" I believe firmly that men can -and do - brilliant work raising children, without a doubt. My opinion: personally, I just wouldn't have had anyone else do it. A typical child would have been one thing, but a special needs child is quite another. As Ms. Palin said, special needs children invoke a special kind of love. Again, she is right. Here's my take on it: I carried Thomas for 9 months, bore him, and when the challenges surfaced, my laser beam focus became helping this child. It was my responsibility, my new calling in life - given this wonderful and challenged boy - to do right by him and get him everything he needed to progress and succeed - me personally. I could not have gone off to a full time job to let someone, even my beloved Rob, do the primary care giving. This was my boy and I was his mommy and nothing could tear me away from directly helping him and overseeing every last minute. It would have taken many, many Pit Bulls With Lipstick to tear me away from him. This is why I wouldn't have had as much of a problem if it had been a father of a special needs 4 month old. It is simply inconceivable to me that she would knowingly make this career-advancing choice now - to be away from Trig as he faces almost certain surgeries and definite years of therapies and treatments. I wish that this offer could have come for her in 4 years or 8 years. Then I would not have had a problem with it. How cool would it be to have a special needs child so close to the White House? But these first months and years are critical, and she is choosing the Vice Presidency over personally tending to her son. I cannot and will not approve of this choice on her part. I say this regardless of political party affilication, qualifications, and opinions on hot-button topics. It's my opinion, period, even if it will piss people off.

Fact-checking

2008-09-05T21:44:00.002-04:00

I promise I won't post too many political comments, but when the candidates speak about special needs children, it's fair game here. This one begs to be voiced. Sarah Palin certainly grabbed my attention Wednesday night when she pledged to be an advocate in the White House. I hoped this to be true. Turns out I may have been right to await judgement. This quote is from a blogpost on the CBS news website, fact-checking Palin's speech.

Palin: "To the families of special-needs children all across this country, I have a message: For years, you sought to make America a more welcoming place for your sons and daughters. I pledge to you that if we are elected, you will have a friend and advocate in the White House."

Sarah Palin might have changed her mind on this one recently. However, a comment here notes that Palin actually slashed funding for schools for special needs kids by 62%. Budgets: FY 2007 (pre-Palin), 2008, 2009 (all pdfs).

Here is the link to the whole article. http://www.cbsnews.com/stories/2008/09/04/politics/animal/main4414049.shtml

Maybe now that she has a 4 month old with Down Syndrome, she's changed her mind on that. But wouldn't that be flip-flopping?

VP pick

2008-09-04T19:54:00.001-04:00

Boy, oh boy, do I have a lot of reactions to the Republican's nominee for vice president. I could write volumes, but I will allow Rob to speak for us.

http://chesterley.blogspot.com/2008/09/palins-unacceptable-decision.html

Girlfriend?

2008-08-23T20:52:00.001-04:00

Apparently, T is a heart-throb at his school! The divine Brett, one of the therapists that work with T every day, came out to my car one recent morning with a big smile on his face. He always shares great stories with me about cool things T does at school. He's a dad of special needs kiddos himself, so he knows how important it is to hear these fun stories! (We hear so much about what they can't do, how they tantrumed/screamed/stimmed too much, etc…) Anyway, he reported that one of the girls at the school has taken quite a liking to T. So much so that she took him by both sides of his face and kissed him on either cheek over and over again! What makes it even more fun: apparently, he was eating it up – laughing and squirming and smiling through it all!

This warms my heart so much. A little girl has a crush on my boy! I remember having my little crushes in elementary school, too. And now, my little boy is the object of another little girl's affection!

One Swell Poop

2008-08-22T20:28:00.001-04:00

It has happened. The day for which I have waited for years, the one that I dreamed would come and thought never would. T has pooped in the toilet – the whole job, beginning to end!!! One flushable Cottonelle Wipe, and we were done. Not only did he poop in the toilet today, but Tuesday, Wednesday and Thursday, too. 4 DAYS IN A ROW!!! Okay, I still have to catch him Assuming The Position, but he knows what to do now, and tonight after dinner he TOLD me he had to go. Yes, he had already peed in his tighty whities, but he promptly pooped in the toilet for the second time today!!!

Ah.

I think back to all those hours I have spent sitting on the bathroom floor – of our house in Small College Town and here. Back to the days when I couldn't even get him to step foot into the bathroom because he knew I was going to try to get him to sit on the toilet, and the mere thought of that was too aversive for him. How long it took for him to be willing to sit on the toilet, even for a few seconds. Then the endless stream of days, weeks, months and even years (yes, YEARS) that I would catch him about to poop, take him to the bathroom, sit him on the toilet, watch DVDs, sing, talk, read books about potty training…and nothing would come…until after I had given up and he pooped in his Pull Up 10 minutes later when I wasn't watching. I have felt so incredibly defeated and hopeless…until now. All the hard work has FINALLY paid off.

Dare I say it? I think he's got it.

And you know what? If he can learn to poop on the toilet, then he can learn to ride a bike. He could learn how to write his name. He could learn how to have a conversation. He could learn to read. To have a friend. To watch a TV show with a plot & follow the story. To use a computer. To have a job. It may be in his own time, and it may take the sweat & tears of his parents & countless teachers & therapists, but he'll do it, by God. He'll do it.

All this from poop. But I'm feeling really good today.

A Great State Fair

2008-08-09T20:47:00.001-04:00

Rob & I took T to the State Fair today. It's a Saturday, so it promised to be a crowded day - but the weather promised to be seasonably cool – only 80 degrees – and with family in town, we decided to give it a whirl. And what a great day we had! The biggest news was that he actually rode some carnival rides today, and had a terrific time! I think I've found my roller coaster buddy. He rode the carousel, smiling all the way, then a kiddie roller coaster, LAUGHING all the way! He rode the roller coaster twice – once with me, once with Rob. On to little cars that go around in a circle under a huge colorful umbrella, and lastly down a mega slide on a burlap bag. Okay, there was a little screaming when I put him on my lap to go down this huge thing, but the shrieks of protest immediately turned to laughter when sliding down. Once we were down, he even stopped at the entrance to the slide, looked back at me with that "I want this" look…and I had to say no because we were out of tickets. But even then, there was just a little yelp in protest, but we were off again. He was in a good mood all day, despite the crowds and stimulation. And we had another really, really nice moment: at the duck pond game (where everyone wins) I approached the worker without T, said that I had an autistic kiddo with me and just wanted to know how it worked and what we needed to do to win a big ball. Just two small plastic ducks would earn the coveted ball. So a few minutes later, I brought him over and he pulled two ducks out, earning him the ball, but the worker said "Two smalls allow him to choose a ball, but he gets to choose a large prize." My heart just melted with thanks. There really are these wonderful moments when perfect strangers show an unexpected act of kindness – they just take my breath away. Rob & I thanked her profusely, but T really did just want the ball, and that's what he chose. We walked away from there so thankful and touched. We happily played with the new ball while waiting for cousins to finish their rides.

On a completely different note: we have now tried a deep fried Snickers bar. It tastes like, well, a Snickers bar in a doughnut. Ugh. Complete decadence – I'm glad I can say I've tried it, and I don't need to have one again!

It's not me, but...

2008-07-29T16:56:00.002-04:00

Just had a difficult moment, and it was mostly due to wanting something for him that he didn't want. Most of the time, my self assurance and confidence are in place, so moments like this usually don't phase me - I just seem to be a little more teary lately, even with all the monumental toileting moments we've had recently.

It's a hot summer afternoon, and he loves to play in spraying water toys in the backyard. But also in our backyard is our air conditioning unit. To say that he loves it does not even begin to describe the relationship he has with AC units. He cannot stay away from them. If he sees one, he runs to it, and if kept from doing so, we are treated to the Eagle Shriek, as we call it: a high pitched, VERY loud short shriek which, when experienced at point blank range in one's ear can render it shut down for several minutes, and if experienced in a shopping mall or grocery can make innocent bystanders jump at the least - or shriek a little themselves - and give him or me some oh-so-understanding blistering comment, which I'm very good at ignoring. Anyway, I brought out some of his new water toys that he got for his birthday last weekend. He even chose which one he wanted first. Then, he heard the AC unit on. He ran to it - no surprise. But even after I had set up the water-spinning penguin, he would not be moved. So darn it, I took him by the hand and walked him toward the new toy. I mean, it spins, there is water...what's there not to like for an autistic kiddo? But no, he fought me, gave the Eagle Shriek several times, and ran back to the AC unit. And I, in a not-so-proud moment, said, "Okay fine, I'll see you later," and went inside. He's outside with his beloved AC unit, grunting and stimming away over the spinning fan, and I'm inside licking my "wounds" and feeling sad.

I really need to be better than this - I know he's not rejecting me - he just is so obsessed by the AC unit that his mind can't get beyond it. Kind of like in Finding Nemo - there is a fish in the dentist's tank that loves bubbles, and he just waits by the treasure chest for the bubbles to come and when they do, he grabs the chest and says "bubbles, bubbles, bubbles!" despite everything else around him. My heart breaks at times like this, and as hard as I try to always have my Strong Mommy of Autistic Child guard up, there are times that my heart bursts through the guard and I just want to be able to play with my son and have ME be more interesting than the fucking AC unit.

Pooped in the toilet!!!

2008-07-25T20:42:00.002-04:00

So the title gives it away, but I just had to share. Not once, but twice this week he has pooped in the toilet!!! I'm stupid excited. For weeks, I've been taking him to the bathroom & sitting him on the toilet when I see that he's Assuming The Position to poop in his Pull Up. (Sidenote: if Ican get them on sale and use a coupon, those suckers are $0.38 each - mulitply that by 7 years, and you can imagine my white-hot desire not to have to buy those anymore.) What's happened up until this week is that I sit him on the toilet, I sing potty songs and T playfully tries to flush or impress me with his upper arm strength by lifting himself up off the toilet seat. I know he has to poop - I can smell it, and I would have just seen him out in the kitchen starting to push. But to no avail - he would just wait me out until I give up and let him get up, and invariably, I'd turn my back to wash a dish or change laundry, and he'd poop in the Pull Up. And I'd try not to cry.

This topic, along with our taking him off special diets, has prompted so many well-intentioned suggestions, monologues and lectures directed at me that I am no longer entirely patient or rational when speaking about it. Have you tried this? Yes. How about this? Yes. What about...yes, yes, yes. I've tried it and it's been 7 years and if it were that easy I WOULD HAVE DONE IT BY NOW. And he'd be potty trained and I wouldn't have lost probably the equivalent of 3 months' time of my life sitting on the floor of the bathroom trying to encourage him to poop. Think I haven't been trying to potty train him since he was three? Every poopy diaper is a reminder of 1) just how delayed he is and 2) how much of a failure I feel that I am in this area.

See, not too patient & rational anymore. Of course I'm not a failure. But he is delayed. Remember: functioning at about a 2 1/2 year age equivalency.

But back to the good news!!!! Monday, I once again caught him just as he was about to push. I smelled a few "warning shots", so with my patience in tow, I took him to the bathroom. Those faint of heart & with delicate sensibilities, stop reading. He sat down, and after a moment, I could see that the tiniest bit of poop had emerged. I praised him, patted & massaged his legs, encouraged him, and waited, and waited, and watched. Nothing. Several minutes passed. I'm thinking "For crying out loud kid, I can SEE you have to go! For the love of God, DO IT!" So maybe this was divine intervention, but I started singing vocal warm-ups to him. He thinks arpeggios are hilarious, so I sang them. I sat on the floor of our half bathroom singing arpeggios and made him laugh and smile and laugh some more, and then...quite to his and my surprize...PLOP, a poop hit the water. It was one of the most beautiful sights ever. And the addus bonus, he did it again the next day. Haven't caught him since Tuesday, but I will - and he'll get the hang of it.

I have to laugh when I think of this story, though. I mean, what a truly bizarre story - my singing my operatic warm-ups in the bathroom while my son takes his first dump in the toilet. But he did it, by God, and I'll sing in the bathroom everyday for the rest of my life if it will help him poop in the toilet.

Is that water running?

2008-07-05T20:29:00.001-04:00

A momentous night! We were all enjoying our dinner out on the porch. T was happily eating his dinner (which has gotten considerably easier lately since he's been willing to try new foods – amazing) when he quite quickly and purposefully stood up. He looked at us both, then at Rob, and even moved toward him and mumbled something. It was another one of these glimpses of T trying to really communicate with us, which is happening more often and is very cool. Rob asked him if he wanted something, and I asked him if he needed to go to the potty. He said "No potty", but went inside. Rob & I marveled at the attempt to talk, wished we understood his words better, but stayed on the porch and continued to enjoy the unusually temperate early July temperatures. A few moments later, we heard the distinct sound of what we thought was water running – not unusual for T, since he really likes to play in the water. But both Rob & I looked quizzically at each other, went inside, and discovered our boy standing in front of the toilet, peeing into it without having had any assistance whatsoever!

YAY!!! All by himself. Okay, this meant that he 1) felt that he had to go (huge), 2) knew that he had another option other than peeing in his Pull Up or underwear (even huge-er), 3) wanted and tried to tell us (awesome), 4) walked into the house and went to the bathroom, 5) pulled down his pants, 6) pulled down his Pull Up, 7) lifted the toilet seat and lid, and 8) PEED in the toilet!!!! Oh my God, he did it!!! This means that he CAN, he CAN, he CAN DO THIS!!! I know he won't have this all down tomorrow – and we still have to work on the pooping – but holy crap, this is such a big deal. He did this on his own. By God, he's going to be able to be potty trained. He will, he will be, he will do it.

I am so friggin' happy. I'm so proud of him!!!

And if that wasn't enough, later on, I was walking by him and said that I'd be right back – that I needed to go wash some more dishes (which still need to be done, by the way.) He said "No downstairs", reached and gently pulled me by the elbow and quietly said "1-2-3." He was asking me to play our little game where I count to three and throw him on the bed. He ASKED me to play with him! Our little guy – he amazes me and inspires me and gives me such hope for his future. I am very happy tonight.

“So, what’s your take on vaccines?”

2008-06-25T22:37:00.001-04:00

I've gotten this question with much greater frequency lately. The general public seems to be increasingly aware that families with autistic children have some serious concerns about vaccines, and I'm finding that people are much more curious about the subject – enough so that people I've just met are willing to ask me what I think. Even friends that we've known for a long time have summoned the courage to ask me. So what do I think about vaccines?

It's complicated.

The community of folks who believe that vaccines play a role in the causation of autism are (as many small, vocal groups raging against The Machine are) depicted as crazy, grieving people who are simply looking for something to blame their child's condition on. You've seen the news clips, I'm sure – followed up by Important Experts in white coats explaining condescendingly that research has shown that vaccines do not cause autism. Okay. True.

But that's not what this growing community of physicians, psychologists, therapists and parents are saying. No one's saying that vaccines are the sole cause of autism. If they were, we'd have figured that out long ago. Here's what these "crazy" people are saying: 1) there is a genetic predisposition or sensitivity. 2) There is a toxic event. 3) There is over-use of antibiotics. So in some children, 1+2+3=autism.

For the record, I'm one of these "crazy people." But I'm not crazy. We're right. Continued research will prove it. And there is going to be a huge cost to make this right.

Rob & I can look at our combined family histories and see that the genetic propensity was there. No one had autism, but there are related disorders on both sides of the family. Check off box #1 for "Genetic predisposition."

Okay, on to box #2: toxic event. I was concerned enough after T's diagnosis that I dove into some serious online research. I had T's vaccine schedule on the desk next to me, complete with every vaccine's manufacturer, lot number and date received. I found websites of law firms who were pursuing class action lawsuits, and checked their list of vaccines containing thimerosal. Thimerosal was taken out of vaccines in the spring of 2001 where we were living, and that was just a few months before T was born. None of T's vaccines were on their lists. T also has never shown any signs of regression – a huge heartbreaking condition that is being pushed aside in all this research that is being done now, saying that vaccines do not cause autism. In any case, T never regressed, and newly armed with the information that none of his vaccines were targeted for class action lawsuits, I heaved a sigh of relief – but I haven't fully exhaled yet.

I'm not sure that I ever will. Why? Because something is going on here. Not just with our boy, but with hundreds of thousands of boys and girls. Seemingly healthy, typically developing children go in for their shots and come out FOREVER CHANGED. How can doctors and researchers look a parent in the eye who took their child in for a vaccine and two days later had a child who wasn't talking anymore and had completely withdrawn from the world and say to this frantic parent that it WASN'T the vaccine that did it? HOW? HOW? HOW? "Oh, it's all anecdotal. Nothing's been proven yet." Well, all you friggin' Einsteins out there, isn't EVERYTHING anecdotal until proven??? How many kids will it take until we finally say "Okay, there is no such thing as a genetic epidemic. Something must be going on, and it has to be in the environment somewhere." I am getting so sick of hearing spokespeople for vaccine manufacturers and chemical companies saying that their products are safe because they've never been proven to be harmful. Again you friggin' Einsteins out there: what about proving that they are SAFE???

But I digress and I'm getting a little hot under the collar. At least I can say, with reasonable certainty, that vaccines didn't cause T's autism. But there are two events that happened during pregnancy that will forever have a question mark above them for me: the Rhogam shot and the flu vaccine I received, both under doctor's orders. Both contained thimerosal. Was this the toxic event that tipped the scale for him? Perhaps this is why we never saw regression. The deed was done in utero and set in motion. No regression, just delayed – just a little at first, then more by 12 months, even more at 15 months, and we were looking at autism by the next year. And please, no replies urging me not to blame myself. I truly don't. I'll never know if those injections had anything to do with it. Maybe they didn't. The toxic event could also simply be the toxic soup we live in. And if you don't think we live in toxic soup, well, there are tens of thousands of new chemicals that have been created since WWII. A mere sliver of that number has ever been tested for their safety. Read those last two sentences again. That means that there are thousands of chemicals out there that have never been tested for safety, and they are put on our crops, in our food, in our clothing, in our cleaners, in our air…hello, toxic soup. I think box #2 can be checked as well.

Box #3: over-use of antibiotics. T had a string of several ear infections when he was two that all were treated with antibiotics – one right after the other. I swear he was on several rounds antibiotics in about a three month period of time. And throughout his childhood, we never met an ear infection that didn't meet an antibiotic. Check that box, too.

So, do I think vaccines cause autism? No. But I do think that they are proving not to be safe for increasing numbers of children, and I'm sick of vaccine manufacturers and the AMA trying to prove they are right instead of looking at the numbers and fixing the damn things. Don't give so many at the same time. Don't give them so early. Let the immune system develop before slamming these teeny bodies with 24 shots in the first two years. And get the shit – er – chemicals OUT of the vaccines.

I fully realize what is at stake here. If vaccines or chemicals in the environment are proven to be a major part of the autism equation, then all these major players will be culpable for causing this epidemic. And they will never concede that.

In the meantime, T is who he is, and he is a true blessing to us and to everyone in his world. A sweeter, happier soul you may never meet.

And if we have another, we're doing a very different vaccine schedule. You can count on that.

Hard Data

2008-06-25T22:30:00.001-04:00

We recently had his 3 year re-evaluation conference with his school district. It's a wonderful school district, and we've never had to go to battle with them for anything. But one subject matter was not easy to discuss. For this re-evaluation, a developmental profile was completed. His age equivalencies for different areas (such as physical, social-emotional, cognitive, etc) range from 1 year 11 months to 2 years 11 months.

He's 6 years 11 months old.

Daddy

2008-06-18T21:16:00.001-04:00

Right before bedtime, I listened to a voice mail from Rob on speakerphone. T heard his daddy's voice from across the kitchen, walked over to the phone and said "Daddy." I said that it was, and he put his ear up to the phone, listened, and said "Daddy?" again. Wow. I explained that this was just a recording, but asked him if he wanted me to call him. Not getting a response, I did anyway. We got Rob's voicemail, which T listened to intently, and while he heard his daddy's voice, kept saying "Daddy. Daddy." Finally the beep was heard, and he said very quietly again, "Daddy" and then was quiet. I told him that we were leaving a message for Daddy, that we wouldn't hear his voice right now, but that he would hear our voices soon. Rob just came home a few minutes ago and said that he's never deleting that message. The first thing he heard was T's voice saying his name. Almost unbelievable. When we've been waiting as long as we have to hear purposeful communication, especially our names, you almost can't believe it when it happens.

What an exciting night! What does this little guy have in store for us next? I can't wait.

Reading to T

2008-06-18T21:14:00.002-04:00

For months and months now, the bedtime story has been Panda Bear, Panda Bear, What Do You See? By Bill Martin, Jr., pictures by Eric Carle. Rob & I know this title and the entire book by heart by now, as truly this is the ONLY book we've been allowed to read. Believe me, we've suggested other previously favorite books and even a few new ones – only to be rebuffed. So Panda Bear, Panda Bear it has been. You must have guessed by now that tonight there was a change – and indeed there was. Rob usually does the bedtime routine, but tonight I took over the duties temporarily. And when I told him to pick a book, instead of going right for Panda Bear, he paused a moment, considered his options, and then handed me Panda Bear. No great surprise. But when I was done reading it, he rolled over on his side, looked at his little bookstand next to his bed, looked at me with those beautiful brown eyes, and tried to say something. He tried again. "Brown Bear." "Brown Bear, Brown Bear, What Do You See? Is that what you want?", I asked him. And he settled back into bed and waited for me to begin. And so our reading evening began. When Brown Bear was done, he looked at the bookshelf again. "What about Freight Train?" I asked. Again, he settled back and waited for me to start. Freight Train was followed by Dr. Seuss' ABC, The Snowy Day, and Guess How Much I Love You. Yawning had begun by the end of this book, so our reading time ended. But I'm still sitting here in disbelief and joy. I read to him for about 30 minutes and he was listening and following along.

New job, new mission

2008-05-16T22:48:00.001-04:00

I am a working woman again. Life has gotten much busier than it was last fall, and the past few months have absolutely flown by. And yet, as busy as I am, I am feeling so comfortable in my skin again. I have purpose beyond our little haven here at home, and I am making a difference in the lives of other special needs families. It feels really, really good. And it feels good to say that!

In fact, when my friends ask me how the job is going, it's almost uncomfortable talking about how friggin' happy I am in this job. I don't know why it makes me feel uncomfortable – I guess it may be because I'm so used to talking about how rough things are that being in this good spot is so foreign to me. I drop T off at his full-time Verbal Behavior school (which is covered by insurance), go to my job, work with terrific colleagues (all of whom are mommies of special needs kiddos like me), talk with families who need help, pick up T in the afternoon, and have time to make dinner and hang out with him until it's time for bed. It doesn't leave a lot of time for extras, but I'm spending my time so incredibly well that even though I'm tired, I'm happy.

Now, some of the stories these families tell me are heart-wrenching. Some stories are incredibly, intensely frustrating. Some end up having some really happy endings, and some end up simply just being better situations than they were. Regardless, each family is so thankful for the help. Most days, I leave the office wanting to hug both T and Rob for being as wonderful as they are. This job has been eye-opening, certainly. I've told Rob that I wish my job didn't have to exist, but since it is seriously needed, I don't want to be doing anything else with my time while T is in school. I feel very, very blessed.

Hi Mama

2008-05-16T22:28:00.001-04:00

Mother's Day morning 2008 brought with it one of the best spontaneous gifts I've gotten yet. I shuffled into the kitchen, having slept in (how glorious) because Rob got up with T and made breakfast. T looked at me, and said – unprompted – "Hi Mama."

6 years. 6 YEARS I've waited for these moments. I'm so stinkin' proud of him.

Awesome! He's my little talking man.

T’s first movie!

2008-04-03T20:58:00.001-04:00

Today, T went to his very first movie! This was such a cool event. A local autism support group and therapy/support clinic rented a movie theater for the afternoon and sponsored a showing of Alvin and The Chipmunks. What did they do to make it friendly for T and the 25 other kiddos there? They never dimmed the lights and the sound was turned down to a comfortable level – nothing to overwhelm our sensory-overloaded little guys.

Previously when I tried to take T to a puppet show in an auditorium and the lights went down and the other children started applauding and cheering, he FREAKED OUT. Screaming, crying, throwing himself around – I literally had to hoist him up by the waist under my arm and haul him out. Poor little guy. I haven't really tried auditoriums since then, and have never – until today – considered going to a movie. Crowds are really tough. When going to fun community events with typical kids, we've had our share of glares and even a few unsolicited corrections from other mommies who were perturbed by T's giggling, pacing and echolalia (repeating words or phrases he's heard)– even when he's perfectly happy. So we've just made sure that wherever we take him, he has a chance in you-know-where of having a successful outing. But back to the movie!!!

He was SO GOOD. He went right into the slightly darkened theater with me, no problem. This theater is also a grill, so you sit at little tables and order food & drinks. Popcorn and drinks were included in the $5 admission, as well as free gluten-free and casein-free snacks. He sat right down at a table with me, nibbled on a GFCF cookie, enjoyed the popcorn, grimaced at the full-strength fruit punch, and didn't make a thing over the movie starting on the big screen. He really seemed to be just fine – no agitation or extra stimming – just sat and kept an eye on the screen. I even saw a few smiles after a while. And I just sat there, thinking over and over, "I'm at a movie theater watching a children's movie with my son." Wonder of wonders. About 75 minutes into the movie, he stood up and looked at me as if he were saying "Okay, I'm ready to go now", so I let him pace around and we were able to stay until the end of the movie.

Many other people there as well. I was struck by the age of some of the attendees – several well into their teen years. I wondered if they minded going to a children's movie when most teens would be so embarrassed to do so…but they happily ate their cut-up chicken tenders and French fries while watching the movie and seemed to enjoy it. How often have they had this opportunity? There were also several kids T's age – some following the story and laughing at the funny parts, others pacing, pacing, others vocalizing unhappily – but there we all were, in a movie theater, creating our own version of normal and our own version of reality, and it was a beautiful thing.

I love our new city.

You eat with a…

2008-04-01T06:55:00.001-04:00

One of the areas that the verbal behavior school is working on currently is teaching T to answer fill-in-the-blank questions. For example: A dog says: "woof!" A frog says: "ribbit!" What do you use to wash your hands? "Soap." This is a step beyond mere identification of flashcards or "live" items. Last week's most memorable report from this morning therapist was his response to a newer question. Here it goes:

Therapist: You eat with a…

T: Shovel.

That's my boy!!!

New shoes

2008-03-02T13:50:00.002-05:00

T has been on a shoe strike for over a year now. He decided one day that he didn’t want to wear shoes with laces, or shoes that were white, or anything different from his two Chosen Shoe types: Crocs and LL Bean Comfort Mocs. We are currently on the third pair of brown Comfort Mocs in successively larger sizes. This past summer, he diverged a bit to wear some Merrill sandals with a covered toe – something I worked hard on because he was going to day camp and needed to be wearing something more sturdy than Crocs. We even had some trouble this winter convincing him to try winter Crocs – the ones with the fleece lining! Three pairs of shoes have gone back to the Stride Rite store – three really cool pairs of shoes, I might add – which were absolutely rejected. Thank goodness for 30 day return policies.

He has started attending a motor activity clinic downtown on Saturday mornings, which is run by the university where Rob works. He is paired up with PT or OT undergraduate student and spends two hours of one-on-one time with this person. 45 minutes in the gym, 45 minutes in the pool. Awesome! I decided that now was the time to get him back in athletic shoes, come hell or high water.

So, here’s what I had to do: out came the tub of mini chocolate chip cookies and the pair of shoes. I showed him the shoes, which he shoved back toward me while saying “NO SHOES.” I showed him the cookies. Got him to sit down and hence the game began. Any time he even put just his toes in a shoe, he got ½ a cookie. (The cookies are the size of a quarter, so no lectures on sugar, please.) Then I upped the ante: to get a cookie, he needed to put his foot in, but not his heel yet. Once that was a success, then the heel had to go in. This was the hardest part, and the point at which I got kicked accidentally in the face. I’ve learned from experience that I cannot react when something like that happens, so on we went as if nothing happened – no permanent damage done. Then I counted “One, two…” and he said “Three!” and on went the shoe, just for just a second. Cookie earned. After several rounds of this, then it had to stay on for 3 seconds. Another cookie earned. After several rounds of this, Rob stepped in and we put both shoes on for a second. Cookie. Both shoes on for several seconds. Cookie. And then it was time for bed.

I won't minimize the patience this took. There were several times I wanted to just shove that shoe on his foot and force him to wear it - and I was close several times. But in those heated moments, the Still Small Voice said that if I do that, then he'll be even more traumatized by the shoes and would never wear them. So I took a deep breath (and a cookie or two myself), and went on.

The good news: the next day, he put on those athletic shoes (after a minor bout of prostesting.) Today, when I went to put on his brown shoes, he said “No brown shoes” and put on the athletic shoes! So okay, they didn’t match his Sunday outfit, but who cares. He’s wearing different shoes!

Another?

2008-02-25T14:26:00.002-05:00

I haven’t written a post in a while – mostly because T is doing really well and we’re in a good space. Life is in a good routine, and he’s a happy little guy. I think back over the year we’ve had, where we were a year ago with teachers quitting, therapists changing, diets & diarrhea, and I am filled with relief and thanks that it is behind us.

So I’ve had time to think and think and think. The question is: do I want to have another child?

This is such a personal subject, but it is something I’ll share at least part of here. It is a question so many parents in our situation face and struggle with, and I am really struggling. I haven’t come to a final decision – and ultimately of course the decision will be made with Rob. But a big part of our decision rests on whether or not I want to have another. Not “can I?” or “should I?”, but “do I want to?”

Can I? Yes, I think it is still physically possible. Should I? I really hate shoulds. You should have just seen me as I wrote the words “Should I”…I literally rolled my eyes.

Truth be told, I’m really not sure that I want to. And that makes me sad to write that, but it feels good to be honest. I always thought that I’d have at a minimum 2, probably 3 and possibly 4 children, and Rob was on board with this. Now here we are with one, and there are a hell of a lot of reasons to stay where we are.

I hate making decisions based on fear, and I admit that part of my thinking is based on it.

But am I then saying that I only want another if it is a perfect, typical child? You don’t have children so that you can have perfect little kids. You have children because you want to be a parent, to share love with another little person and watch them grow, to rejoice in their accomplishments and help them grow to all they can be, to share this with your partner because you have something to give – and none of that says anything about being guaranteed a typically developing child. There are no guarantees, period.

And there is so damn much at stake. T’s future, my sanity, Rob’s sanity, our financial future – if we have another special needs child. And I’m not getting any younger. Not too old yet, but pushing 40. The longer I wait, the more chances of complications.

Knowing what I do about autism, I've seen just how bad it can be. We are blessed with an angel child, and I know we've got it easy compared with other families faced with this diagnosis. The more research we do, the more is published by researchers, the more it looks like genetics play a huge role in the causation of autism. This could happen again, and it could be much, much worse.

Then again, there are plenty of autistic kiddos with typical siblings. I've seen them, too...dragged along to endless therapy sessions & bored to tears, needs pushed aside because the autistic sibling has more pressing needs, acting out for attention or simply disappearing and not asking for anything. They know that their brother or sister will someday be their responsibility.

Somehow, some of these children end up being the most wonderful, sympathetic young people I've ever met.

I just feel like I’m talking and thinking in circles. Part of me – forgive me – wishes that the decision could be made for us. A doctor tells us that more children aren’t possible. I couldn’t sustain the pregnancy, for example.

One recent thinking in circles session ended with a realization: there is no right or wrong answer to this question. Whatever Rob & I decide will be right for us. Either decision would be courageous, and either decision would be foolish.

Employed!

2008-02-25T13:49:00.002-05:00

Back in November, I turned down a job that was close to perfect as far as hours, location & mission go...but it wasn't exactly what I wanted to do. Today, I officially said YES to another job, and I'm very pleased and excited - and eager to see where this journey takes me.

This is part of the mission statement of my new employer: We are the place for families and professionals to go to “ASK” questions about children with special needs and to access information and resources about a variety of topics such as health insurance, special education, community resources and medical homes.

I think the thing that is most amazing to me about this new job is how it came to be. I hatched this idea a few months ago, talked to some people, they referred me to others, and here I am: tomorrow I start three days of training and I am part of the work force again!

I prayed and prayed about this. Once I had my first interview and things went really well, I did my life long practice of thinking "Oh geez, life is pretty nice right now...do I really want this change?" All my free time while T is in school will be gone, no more leisurely morning & afternoon hours to charge myself up for the busy after school & evenings. But I really had an intense prayer time a few days ago (rare for me), saying to God that whatever is in store with this job, I'm in. If I got the job, then I'm along for the ride - helping families get the help they need, helping our family in turn by learning all that I will in training and on the job, and starting a new journey and possibly a new career path. But if I didn't get the job, then it wasn't meant to be and something else was out there. And for once, I truly released this situation to God and felt comfortable and at peace with whatever happened. So when the phone call came, I was excited, took the job, and said "Okay, God, here we go."

Adding to the employment news, I've gotten two singing gigs here locally! Wow! It feels so damn good to sing again. I really have had to put most of my work & career life completely aside these past years, especially since T's diagnosis. I didn't even have the slightest desire to sing. It's not like I made a conscious decision not to sing - I just didn't. But since we've moved here, things are happening for me. I sang at a church back in November, and I loved it. It's looking like I can take this job and also be doing some singing around town too. How great would that be? This feels so exciting and promising, and a little scary, too.

I've enjoyed this time I've had since he has been in school all day, but have also felt an urge to start earning some money again, and more importantly, do something important & useful with my time. I have a lot of knowledge now, and I'm a good communicator, and I also seem to have "Tell me" written all over my face because people talk to me. And its not like I'm working full time - this is the beautiful thing - I'll be working only while Thomas is in school! And the office is less than a 10 minute drive door to door. I could even drive home for lunch, put some laundry in, or stop at the grocery, for crying out loud. AND...I'm helping families of special needs children get the help they need.

And when I get nervous about this new adventure, I remind myself that I do this every time I'm facing a change. I used to be sad before my birthdays as a child because I'd never be 10 again. Do you think I fear change?

Announcing what's next

2008-01-26T20:54:00.000-05:00

Twice today, T has let us know that he knows what's coming up next. This is a really cool new thing. We were driving to a restaurant, and out of the blue this little voice from the back seat says "Go eat." Why, yes we were going to go eat! Then on the way home, unprompted, that same glorious little voice said "See Chester" (our dog.)

This is an expansion of something we've heard in the mornings recently. On our way to school every morning this week, he's said "See Brett" (Brett is his morning therapist.) There was a morning a few weeks ago that Brett was not there, so another therapist came out to the car to get T. To this, T responded "I want Brett." And apparently, he did the same thing for his afternoon therapist when she wasn't there, and said to the substitute "I want Kimberly."

We've been working hard on him saying "Hi Brett" and "Bye Mama" when we get there, and that is coming along nicely but slowly.

2-3 word sentences. So glorious!!!

Tears

2008-01-25T16:27:00.000-05:00

T ended up entertaining himself for much of the afternoon & evening yesterday. He usually comes home from the verbal behavior school and watches a video while having a snack, after working hard all day. I am either napping on the couch near him or on the computer tending to stuff - and yesterday, it was paying bills, balancing accounts, etc. This took longer than usual, so I really didn't interact with him much before dinner. After dinner, Rob & I watched the news and then enjoyed a post-dinner conversation, so T was still just entertaining himself. He does this most evenings after dinner by walking an invisible circuit around the kitchen & family room. Only last night, I think he had been alone too long, and felt it...around 7:15, he stopped by the fridge, looked at me & Rob, and started to frown. The lower lip started quivering, and tears built up in his eyes. Nearly broke our hearts. We asked him what was wrong, and he did make some sounds - his jibberish that sounds SO much like words - and once again, I wished so desperately that he could talk and tell us what was making him cry. So I took a guess, asked him if he was bored & lonely, gave him a big hug, and took him into the family room where we played with bubbles and the thunder tubes his grandparents gave him a few weeks ago. Before long, he was smiling and laughing, and all was well.

Okay, so I think it is reasonable to assume that he was wanting our company - that he was bored and lonely after all. I thought kids with autism weren't supposed to be social, that they preferred to be alone and were completely self-absorbed in their own world. NOT MY KID!!! He does have those tendencies some of the time, but clearly not all the time.

I just love this little guy.

What kind of world do you want?

2008-01-15T09:00:00.001-05:00

One of T's teachers forwarded this video on to me today. I think it is well done, and worth viewing (of course, I'm probably preaching to the choir here, but regardless...) It speaks to the huge need for health insurance mandates for treatments for autism. It absolutely stuns me that insurance isn't covering treatments for our kiddos in a vast majority of states around the country, and makes me so very concerned for what's in store as these children go through school and then become adults and have to make their way in society.

http://www.whatkindofworlddoyouwant.com/videos/view/id/408214

I try not to dwell on the future too much. I used to worry incessantly and freak out about T's future. Somewhere along the way, I had a lightbulb moment (or perhaps one of my God Moments). As clear as day, the realization sunk in that the only way to take care of T's future is to do my absolute best for him today, tomorrow and next week. There's no way to know what's in store, no road map for us on this journey. But if we focus on the present - what therapies does he need, is he getting them, is this schooling situation working for him, is he making progress, etc., then the future will take care of itself. We've set up a Special Needs Trust for him so that he'll have financial resources when Rob & I are no longer around, and done all the legal planning we can. Those are things we can control. Schooling, college, independent living, employment...all these things are out of our control at this moment in time. But taking care of him now - that's the only way to assure the best outcomes for those other concerns in the future.

A Happy 2008 so far

2008-01-14T12:25:00.001-05:00

We've done it – T is off all dietary restrictions. No more Specific Carbohydrate Diet or Gluten Free Casein Free diets. And the great news is that we've seen no negative side effects since reintroducing normal foods back into his diet…in fact, he has had completely normal poops for nearly 10 days now. He smiles a lot, looks at us more, makes more attempts to communicate, and is SO happy when I put that peanut butter sandwich on wheat bread in front of him. Glorious! I'm so happy for him, and I'm so glad to have my life back after months of making so much food from scratch. I would have gladly done that baking for the rest of my life if we had seen improvements in T's behavior and poops, but we didn't, and I'm not shedding any tears over the diet chapter of his life being done. We will continue to feed him as clean, organic and chemical-free a diet as possible – that's good for anyone – but no more autism diets. THEY DIDN'T WORK FOR HIM!!!

Ah, the double edged sword of these biomedical treatments: they give you hope, but they don't always work. I have a friend here who humbles me (and honestly, concerns me) with just how far she's willing to go with the biomedical interventions. Her beloved son is 4 and they've done over 2 years of biomedical treatments on him, with little to show for it. Her heart is breaking, and mine breaks for her. At coffee this morning I told her just how dedicated she is, and how blown away I am by her drive and energy and willingness to try anything to help her little guy. "You've tried everything", I told her. "And it hasn't made one bit of difference", she said, eyes lowering and holding back tears. To you, dear friend, I say, OF COURSE it's made a difference! You know what doesn't work! You love your son! You've TRIED, and can have some peace of mind knowing that at least you've left no stone unturned. But it doesn't matter to her. She's devastated, and it makes me so angry for her. The DAN! Approach does offer hope for improvement, and many children have been helped, but on the other hand, when nothing else has helped and this carrot of hope is dangled in front of you, always just out of reach for some, it hardens the blow when these interventions don't work either.

I haven't had the same reaction this friend is experiencing. I'm relieved that we tried it, and equally relieved that it didn't work. I know that we gave it as close to a scientific trial as we could have, and we didn't see the results we were supposed to. It's going to allow me to have more time to be a mommy to T instead of cooking all the time and mixing supplements into nut butters. We aren't giving up on all the DAN! Stuff, we're just stopping the special diets.

T and I made chocolate chip cookies on Saturday. We hadn't done that in 11 months. He remembered though, and reached up for the mixing blade when I was done mixing the batter. I paused for a moment, wondering about the raw eggs in the batter, and then thought "What the hell? He's been deprived for so long, and I have eaten WAY too much raw cookie dough to have any reasonable argument as to why he shouldn't have any." So I handed it to him, and he was in sheer 6 year old bliss for about 15 minutes, carefully fingering off each little smear of dough. I'm so happy to have these moments with him again.

Pregnancy books

2008-01-14T11:51:00.000-05:00

Recently as I was organizing my office, I put all of my pregnancy books (What to Expect When You’re Expecting, Your Pregnancy Day by Day, etc) in my closet and closed the door. I am trying to allow myself to feel what I feel and not suppress emotions, but instead honor them. When I looked at those books, I remembered back to my pregnancy…such a happy, joyful time filled with planning, dreaming, imagining…it makes me want to be pregnant again, once more in my lifetime, just to feel that way again. But no doubt about it, I would get angry whenever I’d see them in my office. This confused me, so I allowed myself to really sit and think about why I was getting angry when I saw them. The answer that came to me was this: I really believed, truly believed, that if I read those books and took all their advice and rested and pampered myself and went to all my prenatal visits and got the healthcare that was recommended that everything would be fine.

Perhaps on many levels, things are fine. T is healthy and is really happy now that he’s off the SCD & GFCF diets. Rob & I are still doing really well despite the statistics we hear about divorce rates among parents of children with autism. T is making good progress with going full time into Verbal Behavior therapy. We are blessed to see consistent progress, and to have so many wonderful, dedicated people working with him and loving him.

But on many other levels, things didn’t turn out fine. Despite pouring over those damn books and following every recommendation and rule and having a near perfect pregnancy, our son is autistic. He struggles to communicate and has odd behaviors that make people stare and some behaviors that alienate him (the eagle shriek, for one.) We have no idea whether he’ll ever to go a public school, go to college, live independently, have someone who will love him and have a family with him. I’ll never know for sure if the flu or RhoGam shots I had (both at my OB’s recommendation) had anything to do with creating a “toxic event” for him in utero. (I don’t blame myself for this, but it will always be an unanswered question for me.) Recent research points to genetic causes – changes in the DNA at chromosome 16 – but the genetic testing T had didn’t show any problems.

So I read the books, I followed the rules, and everything wasn’t fine. Despite it all, sometimes, unfair and bad things happen. It made me want to scream and rip the pages from those books and burn them so I never have to look at them again.

I don’t want this to sound like I don’t love T or think he’s wonderful. He IS wonderful, and I love him with every cell of my being. He is flesh of my flesh and I will do everything I can to be the best mommy he could possibly have. Absolutely and positively, without a doubt, he is a glorious child and an angel sent down to be with us. And we have been given the responsibility of raising this wonderful little boy, which we accept wholeheartedly.

I just don’t want to have to look at those damn books anymore. What’s done is done.

This Year’s Christmas

2008-01-05T20:36:00.001-05:00

I may just have to do bullet points here:

T opened his presents this year. He sat with us, and opened his presents. This is the first time he's done this, and he needed a little assistance occasionally, but by God, he did it.
He was allowed to eat a few Christmas cookies – and they weren't GFCF or SCD legal. No noticeable change in diaper contents at the time.
He is making more eye contact when requesting things he wants. In fact, he'll walk to another room to bring us what he'd like (fill my juice cup, put this DVD in), and can respond verbally when asked "What do you want?"
He's making faces at himself in mirrors and really having a good time.
He's getting better and better at saying "Night night, mommy" at bedtime.
We started Epsom salt baths.
We're continuing Methyl B-12 injections, and it is not a traumatic event anymore. In fact, he turns around for me, gives Rob a hug, and it's done without a single tear shed.
Major, major event: He cried when he had to say goodbye to Auntie J, Grandma & Grandpa after Christmas. Understand that he has never, ever displayed separation anxiety, even for me.

I'd say we've had a great holiday! But most important, T is a happier boy than a month ago. What a relief. School is good, therapies are good, diapers are getting better…geez, part of me is waiting for the other shoe to drop, but I'm enjoying this, damn it! And I'm ready for 2008.

Normal poop!

2008-01-05T20:20:00.000-05:00

Quick entry – I have a lot to update about Christmas another time – but I just had to report that T had a normal poop today. In fact, he had two – after not pooping for two days in a row. He is happy, energetic…

He’s been eating peanut butter sandwiches on whole wheat bread, cheese, rice crackers that are not GF (gluten free), and other things that he hasn’t eaten in 11 months.

The child is the best lab, the child is the best lab…

Happy kid

2007-12-16T11:31:00.001-05:00

For the last few mornings, I've given T gluten free waffles for breakfast - and held my breath. This is our first real move away from Specific Carbohydrate Diet. We are also, as stated in a previous post, continuing the Methyl B-12 injections every three days.

Results so far: he is happier than he's been all year. More real interactions, wanting to play, understanding and maneuvering situations better...it's all very exciting. Now for the poop talk: it is as normal as I've seen it in months. Gross to talk about, I know, but this is one tangible way to measure progress for him. At least I'm not inserting pictures.

I think we're on the right track! Welcome back, rice. Next is cheese, potato, then...GLUTEN. Fingers crossed.

Holiday Train exhibit

2007-12-14T21:59:00.001-05:00

Today we went to our local zoo to see the big display of model trains. What a great time! And it was no surprise at all to spot at least one other autistic boy there. Something about trains and these kiddos really connects. I took him today because Fridays are half days at the Center (VB school), and I hoped that since most other kids would be in school, there wouldn't be a big crowd. I was right – it was perfect! Just a few other kids & T had the big space to themselves, and T was able to jump and flap his hands and make very happy noises as much as he wanted – especially since another boy was there doing the same thing. He especially liked the trains that moved quickly and were on tracks close by.

What pleased me so much was that although we did stay in certain areas for long, long periods of time, he did eventually move around the whole space, even upstairs, and got to see the whole exhibit. He got distracted for a few minutes by the enormous fans (this display was set up in a huge greenhouse), but I was able eventually to move him away from them without a scream or a lying-down fit.

This was a very successful venture out into the world today. I feel so very blessed that we have a kid that can maneuver these situations with reasonable success. So many fellow parents don't even try anymore – they just know their boy won't be able to handle the crowds, the change of routine, the noise, the stimulation, etc. Yes, we have had our share of struggles, and even a few disasters, but they have not stopped us from trying. And I figure that if we never take him to these places, he'll never have the opportunity to learn how to handle them.

The grandmother of the other boy & I almost immediately started chatting. She was watching T, and I had spotted her grandson. We smiled at each other, and when I approached, said "I think our boys could stay here ALL DAY." She replied, "Yes, I think you understand. I was watching your boy. Once you have one, you can spot 'em a mile away!" It was so cute, and honest.

Her boy was 8, and I couldn't help looking forward two years and thinking about T being that big. Do they have to grow up? Can't he just stay little and cute? I won't be able to pick him up when he's that big. And God, I hope he's potty trained by then!

Okay, stay in the moment. It was an awesome afternoon. Let's hear it for model trains.

Methyl B-12

2007-12-14T21:35:00.000-05:00

Five weeks ago, we started a new biomedical therapy with T: methyl B-12 injections. Yes, INJECTIONS! I now know how to give my son a shot, Rob knows how to hold him, and T is awesome at staying still for them. It is the slimmest, shortest needle I’ve ever seen, and when done correctly (I’ve practiced on myself several times) it really can barely be felt.

This is from the Talk About Curing Autism website:” At the Defeat Autism Now (DAN!) 2004 conference, methyl-B12 was awarded “most recommended medical treatment” for autism spectrum disorders by the attending DAN doctors for the year.”

A refresher: DAN docs look at how kids with autism are bio-chemically different from typical kids. Then they prescribe treatments to treat the differences. Many times, kids are helped by these attempts to normalize their systems. Some – very few – are considered “recovered.”

I won’t go into all the science behind all this except to say these few things to you as I understand it: the methylation process is part of the body’s detoxifying process. The methylation process appears to be interrupted in these kids, as well as the detoxifying process. Methylated B-12 can get right to work - their bodies don’t have to do anything to use it. If you’d like to know more, this is the best article I’ve found to describe it: http://www.talkaboutcuringautism.org/medical/methyl-b12-treatments.htm

Today marks five weeks since we started. I am pleased to report (drum roll, please) that this intervention, along with zinc cream and Verbal Behavior, WORKS for T. Just about everything else we’ve tried in the biomedical/DAN! World has had little or no effect. But this…ahh (happy sigh) seems to be having some positive effects. It’s not a miracle or a cure, but darn it, he is talking more: requests, refusals (especially refusals!) and filling in the blanks. He’s more inquisitive and just seems to be more aware of his surroundings and himself. His OT said (umprompted) that he’s talking more, seeking out more vestibular feedback and is more willing to try something new in the therapy gym. Almost every day surprises us with something. A few days ago, T was in the basement when Rob told him it was time for his shot. T got up, walked up the stairs, walked to the refrigerator (where we keep the pre-filled syringes), opened the door, pointed up to the bag of syringes and said “Shot.” Great Scott! A year ago, the mere task of pointing to the refrigerator was in his Verbal Behavior program for 5 months. (Literally – we introduced it 12/8/06 and it didn’t move into maintenance until May ‘07.)

So we’ll continue this treatment. It’s amazing to write those words, because we were so close to giving up on all of this a few weeks ago. We still plan to reintroduce foods to his diet, because all the dietary stuff just seemed to make things worse for him. Rice came back today. I think it’s fair to say that he’ll have some Christmas cookies this year after all. In with methyl B-12, out with SCD!

Decision

2007-11-25T20:28:00.000-05:00

I didn’t take the job, and I must say that I’m pretty stinkin’ darn proud of myself.

I met with the wonderful man who offered me the job, and it became more and more apparent that the job would have been a great match for my availability and qualifications. I kept shaking my head in disbelief as he agreed to my hours, my hourly rate, and my request to be flexible with hours if needed. His office is in between T’s new school and our home – so close that I could have gone to the grocery on my lunch hour, eaten lunch at home and thrown a load of laundry in to boot.

BUT…

it wasn’t what I wanted to do.

That’s kind of a big deal, as Rob affirmed.

I’ve recently come to the realization that I want to help families navigate this huge, unruly system of the autism world. I get excited when I think about this. The more I thought about this other job, my heart sank. It just wasn’t passing the tummy test. It occurred to me along the way that perhaps this job offer was a little test for me – would I take this job for the money & convenience, or turn it down? Do I want this new career path badly enough to pass up this other job? And it turned out that I really want to explore this new venture.

I called him the first thing the next morning, and he was disappointed, but immediately pulled out his list on contacts and gave me the phone number and name of a person he knows who just happens to work for an organization that does exactly what I want to do, and told me to use his name when I introduce myself. Wow.

So I’m on to the next step. I left a voice mail for her within 20 minutes of that phone call. I’ve even decided that I’m going to have someone build a website for my vocal studio. Yes, my vocal studio. I sang at our new church Sunday night, and darn it, it felt really, really good. That got me thinking even more about what I could do to earn some money and have something else in my life other than goat yogurt, methyl B-12 injections and crazy diets.

I sing. I teach voice lessons. And I want to help other families with new autism diagnoses.

Forward, march.

New job???

2007-11-17T22:03:00.000-05:00

I’ve had lunch with my first contact, and we had a terrific brainstorming session. I came away from that lunch with a very positive feeling about my new direction and the possibility that there will be a job out there for me.

My goal was to make no secret of my plans. So when we were meeting with our financial planner a few days ago, I told him about them. This fun, generous man has found his niche in the financial planning world by being a specialist in setting up Special Needs Trusts for families with children who are disabled in some way. (Look for a future blog post about financial planning for your special needs child – if you are doing what you would for a typically developing child, you’re doing it all wrong.)

We were talking about if/when I’d start back working again (he’d connected me with a friend of his who is a church musician here, and we had a brief conversation about getting a vocal studio going). Anyway, since he had been kind enough to try to help me get connected musically here in town, I told him that I’ve been feeling a different career calling recently. He seemed interested when I told him that I wanted to help families of children with autism. He asked about my office experience, to which I replied that I had temped for years while getting my singing career going, working in New York City for a company which worked with companies in Chapter 11 bankruptcy, in Richmond, VA for a law firm, and in Lansing, MI for a hospital’s medical education office. With T starting at the VB center full time, I would have from 9-3 everyday to work, and was hoping to find something part-time that could work within that time frame.

So...he has a job for me. It looks good, anyway! He had a part time employee who moved on to another job recently, and he needed a replacement. He thought that one of the mothers whom he works with would be perfect, because this person doesn’t need a ton of office experience, just a passion to help special needs children. (Oh my God.) The job would be lots of paperwork – keeping up with the filing & copying after he meets with a family, and I know I can do that. But the important part of the job that’s really exciting: this person is going to be the contact with all the special needs organizations he works with. ALL of them – not just for autism. This person would be the contact who would make contact with these organizations, schedule his presentations and maintain contact with them. I can TOTALLY do that. He just wants someone in this job that can talk on the phone and has a passion for special needs children. WOW. And he was fine with the hours I’d be available. WOW.

Okay, deep breath. This isn’t exactly the job I wanted. It isn’t helping families get to the therapies they need. It would be leaping right into 20 hours/week, when I had visions of starting off slowly and working my way up to half-time. It would also mean giving up most of my free time during the day when T is in school.

On the other hand, it would connect me with a ton of special needs organizations. Talk about learning the system. It also would work with my schedule, and it is ridiculous how conveniently it is located to our home and the VB center. I wouldn’t have to know finance at all – the office work sounds easy, and I would be completely comfortable in the role of setting up appointments for him and talking with these organizations. The potential to make a good hourly rate is very real – it sounded like I could pretty much name it and he’d do it. We could certainly use the money. I could certainly use the feeling of satisfaction I get from earning a paycheck again. And I’d be able to pick up T when he’s done at the VB center and spend the rest of the afternoon with him. It also would not be a permanent job – I could get my feet wet with being back in the workforce for awhile, and in the meantime start working on setting up the next job that would take me in the direction I envision going, all the while earning some money again.

This has the potential to be a great opportunity. The look of stunned disbelief and joy on Rob’s face when Financial Planner & I were talking about his was priceless.

So I’m trying to think clearly about all this. It appears that a job has fallen into my lap here, although it’s not exactly what I was thinking of. I meet with his office manager in two more days, and I’ll have plenty of questions for her. I don’t want to take a job just for the money...but gosh, some extra would be nice, especially since we want to start up craniosacral therapy again, and swimming lessons…must think, must think.

New career?

2007-11-17T21:22:00.000-05:00

I’ve mentioned in previous posts that I’ve felt myself pulled in another direction career-wise for a while now. I’ve actually been going through a pretty blue time this fall, wondering why the hell I am not making phone calls to introduce myself to musicians in my new town, why I’m not putting up posters for my vocal studio, or why – for the last several years, to be honest – I haven’t even had the desire to sing. Well, I could probably point to several different reasons, but what I’ve finally realized is that I’m not inspired to do so anymore. At least not for now. What inspires me is the idea of helping families navigate this snake-pit of a system when facing a new diagnosis of autism for a beloved child.

I came to this realization while folding laundry. I don’t know why I can really get good thinking done while I fold laundry or change sheets on a bed, but I certainly do. I was allowing myself to think the impossible: maybe I don’t want to teach anymore. Maybe I don’t want to sing as a career anymore. Maybe my life has taken such a huge change from the life I thought I was going to lead that those plans no longer matter. Those plans were for Me BCWA (Before Child With Autism). This is my reality now. Life threw Rob & me a curve ball, and we’ve either got to work with it or roll up in a ball & quit. I’m no quitter. I do like road maps, however, and any changes from my planned course of events, even in everyday mundane events, takes me awhile to adjust to mentally. So I grin at myself for taking so damn long to figure out what my subconscious has probably been trying to tell me for a long time: I don’t want to teach anymore. I want to help families with an autistic child get the therapies they need.

I knew immediately that I didn’t want to be a therapist or doctor or anyone directly giving services. I like to support – I like to help the person on the front line. All those folks on the front line need people behind them, and I’m really good at that. I’m a good organizer (although my office desk might tell you otherwise.) I communicate well. I explain things clearly most of the time.

My dream job: I want to be the person that goes along with the huge packet of information that goes along with a diagnosis. When a family gets the diagnosis, no matter how well the medical staff does with breaking the news, in the end they are still sent home, heads reeling, with a thick packet of recommendations, readings, research, etc - alone. I remember this clearly. So what I want to happen is that when a family gets the diagnosis, the medical staff says, “Here is the list of recommendations we have for your child, as well as some readings for you, and next week you’ll have an appointment with ‘Tommysmommy’ and she’ll help you decipher all this and maneuver the system.” THAT’S what I want.

The funny thing was that once I realized this, I sent an email to the first person I could think of already in the system, asked her to have lunch with me to help me brainstorm, and we had a lunch date set for 4 days later. No stalling, no making excuses. I wanted to make this connection. Guess I’m on the right path.

First Day at Center

2007-11-05T21:22:00.000-05:00

Our little guy is such a trooper. Today was his first day at the Verbal Behavior school – still half time for the next two weeks until he starts full time two weeks from now. I talked to him often this morning about going to see his therapist at his new room in his new school – even as we were in the car driving there I was easing him into what was in store. He’s never done VB anywhere but home. We arrived, and his BCABA came out to the car to greet us and take Thomas in. No big deal –he just took her hand and went with her. I followed, bearing a few more things for his room.

I was at the Center for probably about 45 minutes total, between loading more furniture in and meeting with the business manager to clear up a mystery EOB from our health insurance carrier. I could not help but hear the noises around the building – the entire time, some child was crying or tantrum-ing due to the transition to the new building. Routine and sameness are huge for these kids – talk about jumping off the deep end from all that! When we arrived, one little girl was in the parking lot, screaming & crying, not wanting to go inside. Many kids were have a rough time today. This was expected by everyone involved, and everyone was appropriately patient & understanding. Our little guy, on the other hand, just walked right in and while he did explore, just made himself right at home. This is what I’m talking about when I say that our little guy is one easy-going, sweet-mannered boy. It’s no mistake that I call him my angel boy - I've often said that if this is what autism looks like for our boy, then we'll take it. When I picked him up, I heard from more than one person there that he had a very happy day. Relief! (And nice that Mommy had time to go get a latte at Starbucks and read for an hour. Lovely.)

The other thing that sunk in today was just how much these people love our kids. Most of these therapists are young folks right out of college – maybe they taught for awhile – but they have no direct personal link to autism. They just were in the right place at the right time, found their niche, and are doing the most fabulous work with these kids who can be very difficult to teach. The dedication and devotion to each kid at the center made my eyes misty more than once. I am feeling very blessed today.

Cheese or Super Nu-Thera?

2007-11-04T20:39:00.001-05:00

T has been a different kiddo the past few days. As I see it, there may be two possibilities for the change – and the changes are mostly good ones. I’ll detail the two below, but let me talk about the changes themselves. The screaming when thwarted has returned, but that’s about it for the negative. Tonight, he watched a football game with us, PRETENDED TO BE AN ELEPHANT (said “elephant” and crawled on the floor, making a growling/trumpeting sound), PRETENDED to water the houseplants, said “night night Daddy” unprompted, is happier and smiling more, and honestly, when the shrieking occurs, it’s because he’s been thwarted and is justifiably frustrated. Overall, we had more presence from him these past few days than I’ve seen in a long time.

I can count on one hand how many times he’s engaged in pretend play.

So, the possible culprits: cheese or Super Nu-Thera. Only it’s not what you’d expect: we’ve ADDED cheese and WITHDRAWN Super Nu-Thera. (SNT is a mega dose of vit B6 which he’s been on for at least two years.)

It will come as no surprise that I’ve been questioning seriously the dietary interventions for the past month or so. A few days back, we had the great joy of having a play date with some friends from Small College Town – it was great to see the kids together again and catch up with their mommy, who is my lifelong best friend whom I just met two years ago. Ever met someone like that? Anyway, her kids had Colby cheese slices as a snack, and two pieces were left out on the kitchen table. I’ll admit that I wanted to see what would happen. T never even put orange cheese to his lips before – it had to be mozzarella string cheese or it wouldn’t be eaten. Lo and behold, he saw the cheese, and it almost looked like he was slowly moving in for the kill. Approaching slowly, looking at it from a few angles, he reached out and picked up a piece. I watched the whole thing. He put it to his lips, decided it was a go, looked directly at me to see if I would scold him (which I did not), and he took a bite - and another, and another. Soon, both slices were gone. I let him do it because darn it, he’s looked so pale and been so sickly lately, and he’s really been a hungry little guy since the antibiotics kicked in for his ear infection. The next day, I asked him if he wanted some cheese. He said “Cheese”, and watched me intently as I sliced more Colby for him. He’s had cheese (hello DAIRY, hello CASEIN) for the past 4 days. Stools haven’t changed markedly.

Note: he also had a few tortilla chips Friday night at our favorite Mexican restaurant. Okay, here’s the thing with all this: the entire time he’s been on this diet, only one other time did he go for foods that were “illegal” – he’s only eaten foods that were put right in front of him. He’s been an incredible trooper and only eaten his food – and this has been remarkable.

I guess I want to see if there is any difference when we add these foods back in. But I’m doing this at his instigation. I didn’t put the cheese out at first, and hundreds of times in the past 10 months, he’s ignored illegal foods. It was his idea to reach for the cheese Thursday, and the tortilla chips Friday – they were not offered.

The kid wants food back.

We also took him off Super Nu-Thera at his DAN doc’s suggestion, when we were struggling to come up with what could be causing the soft stools/diarrhea. He’s been off it since 10/18. So that could be the reason behind the happier behaviors, if the SNT was disagreeing with his system.

Okay, and he’s also been on a 10 day round of antibiotics for that ear infection. So I suppose the changes could be from that, too. He had his last dose of it today, so I’ll keep an eye on all this and report back soon.

But this has been SO COOL!

Move in to new VB building

2007-11-04T20:04:00.000-05:00

Just had to report that we moved T's things into the new VB building this afternoon. We are so excited and still in a bit of disbelief that we are part of this organization during such an exciting time. He has his very own room - as do all the students there. He will continue to be part time in the mornings for another two weeks, then he'll start full time on Monday 11/19.

I took him there Friday afternoon after all his things were set up, and he did really well. No "pinballing", as I describe it. (Pinballing usually occurs when he is in a new house or building - he walks quickly from lightswitch to microwave to garage, dodging my attempt at a calming grab each time. I seriously made myself motionsick at the beach once, trying to keep him from running into the ocean.) Instead of his usual pinballing, he was very curious and interested, taking it all in, and was comparatively calm.

It was cute actually - his current therapist was waiting for him in his room, but as we came in the building, his BCABA/program coordinator saw us and word spread quickly that T was in the building. She and every other therapist who has worked with him this fall walked with us to his room, and while he looked around, they all hovered outside - kind of like the end of Wizard of Oz when Dorothy wakes up after her dream and everyone is surrounding her. It was so wonderful.

Tomorrow is his first day doing VB away from home. More to report soon!

Full time VBCA

2007-10-31T20:45:00.000-04:00

We did it - today we told his teacher at the public school kindergarten that we had this opportunity we couldn't turn down. Full time at the Verbal Behavior Center PAID FOR by insurance. She was sad to hear that she would lose T - she always says that she wishes she could clone him - but she completely understood and supported us in our decision.

I told her that it was my intention that he'd be back, and better than ever in being able to follow directions, understand language and use language. She was glad to hear it, and said there would always be a place for him there.

Both Rob & I were heartbroken over making this decision because this is a fabulous school - a dream situation - and part of us wonders if we made the right decision. But this is an incredible opportunity for T which so many parents would give anything to have. So many parents go through due process with their public schools to get ABA or VB in the classrooms - most of the time to no avail - and we have it for a mere $20 co-pay a day.

I'm also bearing in mind that if it isn't a good fit for T, we can always switch him back to 1/2 time. Doing what's best for him...doing what's best for him...not what I would choose...doing what's best for him...

A Happy Halloween

2007-10-31T20:34:00.000-04:00

I believe we have found a happy way to spend our Halloweens! We did not trick or treat this year. (Last year we did, and it was fun for a few houses, but became very confusing for T. He didn't get that you ring the doorbell and DON'T go in the house. Plus he's on this pain-in-the-bleep diet, so he couldn't eat the candy anyway.)

This year, we put him in his costume - surgical scrubs - and he hung out with us on the front porch while we handed out candy. He had a great time! He was really happy, galloping up & down our driveway when other trick or treaters came to the house.

I did take him to visit two of our neighbors, just to say hello. They were happy to see us, and it reinforced for me that we made the correct decision not to take him house to house. He bee-lined from room to room, going wherever he wanted while I tried to keep up with him. It is so hard to take him to a new house! But the neighbors were glad to see us, didn't seem to mind the investigative tornado that T is (absolutely no damage done), and we all had a good time.

I must add that I saw the most hilarious costume ever tonight. A girl was dressed up in an inflatable sumo wrestler costume! It actually had a little fan in it to keep it inflated, like one of those big lawn ornaments you see at Christmastime. Imagine the size of Violet Beauregard from Willie Wonka and the Chocolate Factory movie (Gene Wilder version) blown up like a blueberry. It was awesome!

"Mom"

2007-10-30T22:41:00.000-04:00

Today, a first.

T has been able to identify me in pictures for several months, and recently has also been able to look in my direction when asked “where is Mama?” He does not call me by name, nor does he call out for me when hurt or sick. He does say “Night-night, Mama” every night at bedtime, almost always prompted.

Some more information that will make this story more meaningful: his VB therapist and I worked for 6 months (no exaggeration – December ’06 through May ‘07) to get him to “point to the refrigerator.” Pointing is not something T did until a few months ago. It is still rare, with the one exception being when he points to pictures on the table in front of him when asked “where is the…”

So this is why today was so cool.

We were at his OT session, T riding a therapy bike around the hallway circuit with me dutifully following behind him and the therapist (the Small World therapist from a few posts ago). She asked him “Where is Mom?”, and after getting his attention and asking again, he glanced back in my direction. I was pleased with this. After several more minutes of riding, she asked again: “Where is Mom?” He stopped pedaling, turned around from the waist, looked at me, POINTED, and SAID “Mom.”

I was blown away. He had never done that before. The therapist didn’t realize what a monumental moment that was for him and me – until she saw my reaction. Such an everyday thing for so many parents…such a miracle for me. Dare I say: a God Moment.

Screening every child

2007-10-30T10:34:00.000-04:00

So, the American Academy of Pediatrics is now recommending that every child be screened twice for autism by the age of two. Rob & I watched this news story very closely last night, and I had some very mixed reactions. Relief that they are finally making sure pediatricians know the warning signs and check for them. Sadness that it has come to this: so many children are affected by this disorder now that it has to be part of the routine Well Baby checklist. Satisfaction that our pediatrician saw the warning signs and got us into our state’s early intervention program so quickly – by 15 months. Frustration that we were part of a huge pediatric practice in the previous city where T was born – their modus operandi was to have the baby see a new doc for each Well Baby visit - was something missed that first year because we were part of a meat grinder medical practice? And continued fear and worry over the increase in diagnoses. What the hell is going on here?

I listened to the list of early warning signs, and thought back to T’s first two years. He never did catch on to patty-cake, nor did he point to anything. He did babble, and although he might have been on the slow side of meeting milestones, he met them all. That is, until language acquisition came along – or in his case, didn’t come along. He also had his Ride ‘Em Cowboy crawl (or as Rob & I referred to it far from earshot: the Half-Ass crawl) where he scooted across the floor on one buttcheek with one hand on the floor and the other up in the air like he was riding a bucking bronco. Very resourceful, our child. So we had some warning signs, but nothing that we thought of as too scary. Although, I admit that somewhere along the way late that first year, I stopped looking at the checklists in the “What to Expect the First Year” book – he wasn’t meeting them all, and it was very unsettling. We just thought he was taking his time. He was a happy little guy, extremely easygoing, and we took pride in the fact that we could leave him in the church nursery or with a babysitter and he wouldn’t make a thing over it. No crying, no separation anxiety – what a well-adjusted baby boy.

Little did we know that the last thing I mentioned was a huge red flag. He didn’t really care if we were there or not. He knew us and smiled and was a happy guy, but it wasn’t necessarily a good thing that he didn’t get nervous when mommy left. We also didn’t know that a friend who has an older child with special needs noticed – at 4 months – that T wasn’t making eye contact the way a typical baby should. She said nothing, but knew something was up. After the diagnosis, we heard of her observation. Although many have asked if we were angry that she didn’t say anything, my response is that I’m glad she didn’t. We had a full year free from worry – one beautiful, carefree year – and I am so thankful for that. We wouldn’t have believed that anything was wrong anyway.

As we began the Early Interventions for his developmental delay, I watched each therapy session intently and did all the assigned homework with him between each session. We had therapists coming to the house 5 times/week. I admit that although I saw the delays, I was mentally just humoring them - playing the game and going along for the ride – surely these things would resolve themselves by the time he went to school, or even by the age of 5 or 6. I went into a crying, frantic rage when his first SLP suggested that we plan to take him to the big city children’s hospital for testing for autism – this was at about 18 months. No way was he autistic – she was so quick to diagnose, and how dare she suggest that??? I even called one of his other therapists, told her what the SLP had said, and asked her what she thought. I was so relieved to hear her say that it was way too early to say anything, and that she wished the SLP hadn’t said anything so soon. If I look back on any conversation with regret, it is that one. Maybe it was too soon to say anything definitively – and at the time, I was so relieved. But she must have suspected autism, and didn’t say anything. This is the conundrum we faced: some docs were saying you can diagnose at 18 months – yet some said you couldn’t get a definitive diagnosis until 3 or 4. Even when we said that we didn’t want to rush a diagnosis, no one pressed us on it. I kinda wish someone had. We even had a pediatric neurologist examine him not long after that, when we thought he had a seizure, and she told us that he was way too social to be autistic. But dammit, that’s what he was, and what did these kind souls do by not telling us the truth? I guess we’ll never know. Maybe – probably – we wouldn’t have done anything differently.

I try not to dwell on the unfairness of all this. We were first time parents, and didn’t recognize the red flags even though they were flying in our faces. If we had had a typical child first, I’m sure we would have caught on much earlier. But we didn’t, and I can’t “what if” or “if only” myself too much.

So even though I watched the news report with mixed emotions, I think it is high time that all children are screened for autism. Now if the AAP would take away egos and financial concerns from the debates about causes, we might get somewhere.

Private & public schools

2007-10-20T10:53:00.000-04:00

A decision we we have looming will be about whether to keep T is his current school situation. We are not displeased by any means - he receives 3 hours of Verbal Behavior every morning and then goes to the public school special ed Kindergarten in the afternoon. We thought that this would be a good mix of highly specialized, intense therapy which is highly effective for these kiddos and a more natural, real-life setting of a public school classroom - good for socialization and generalization of skills.

We love this elementary school and the classroom. This is the classroom that we toured back in April and literally CRIED tears of joy over when we saw everything this room had to offer. I wished that the schools in our previous town could have seen this classroom. We also love the mix of kids at this school: 30% caucasian, 30% black/African-American, 30% hispanic, and the rest other international. AWESOME. This is the atmosphere we want for him.

We also know that this verbal behavior program is working for him. We are also in the unbelievable situation of having this therapy COVERED BY INSURANCE. We pay $20 copay each day, but that yearly total, after meeting the out-of-network provider limit with our health insurance, is nowhere near the $60,000/year it would cost. Yes, $60,000/year. Twice that of the most expensive yearly private colleges' tuition in this country, mind you.

So we are thinking of moving him to full time VB. It would be awesome for him. The center through which he receives treatment is moving to a big, new building in a few weeks, and part of his day would include opportunities to interact with other kids at the center. So he'd get the socialization bit. And he missed so much speech last year, and really got the short end of the stick with the whole school situation in our previous town that we're thinking that this would help make up for that.

But I walk through the hallways of the elementary school and my heart breaks thinking about taking him away from that.

But this isn't about me. And I can't exactly ask what T wants. So we need to do what's best for him. Ultimately, what is that?

9 month DAN app't

2007-10-20T10:33:00.000-04:00

The timing of this appointment couldn't have been better. A few days after receiving the new OAT test results, we were sitting in our DAN doc's office - all of us scratching our heads. Thankfully, we have many more things to try before we give up. Don't get me wrong - part of me would really like to give up - but knowing that there IS yeast & bacteria overgrowth keeps me moving forward with this. She (the doc) was frustrated with us (and for us) that he didn't seem to be responding to the treatments the way most kiddos do - but it also wasn't the first time she had seen it.

It wasn't just the diet he didn't respond to - we also didn't see any change when we started him on the mega doses of vitamin B6. Not every kid does. But that is a clue that points toward his methylation process not working properly (and I won't bore you with that), so she feels strongly that the Methyl B12 shots should be tried with him soon. I agree.

In the meantime, we are doing several mini-trials of taking out vitamins/supplements to see if it helps with the stools. So far, Super Nu-Thera (the vit B6) has been out for a few days with no known negative effects.

One really cool thing: he's no longer grinding his teeth. He used to do it all the time, and very loudly. It made people cringe it was so loud! When we began all this back in January, our doc said that teeth grinding was usually caused by yeast overgrowth or zinc deficiency. Rob has been diligently rubbing zinc cream on T every night for several months. So since there is no change in the yeast, it points to zinc levels being better. This was further supported when we told her later in the appointment that he's refusing his juice w/ Super Nu-Thera, and she said that his taste sense is getting better - and that is usually due to better levels of zinc! Geez.

We weren't kidding when we joked that this is one big chemistry experiment.

We're also going to introduce back into his diet some of the foods he reacted to in the IgG test (food sensitivity.) So almonds, peanuts and rice will be the first items slowly rotated in. More intense scrutiny of the poops to come for me - and behaviors, too.

God

2007-10-12T16:48:00.000-04:00

Yeah, I was pretty pissed with God a few days ago. I didn't blame God for the test results - that wasn't it. I just really wondered where the hell God is during times like this. I have so many conflicting opinions myself in response to that question that I really don't know what I truly believe, if pressed to give a quick answer.

After the tears and anger subsided and I lay in bed trying to go to sleep, I found myself on Tuesday night saying to God "Just tell me what to do. Just tell me what to do. Just tell me what to do." I don't think I got an answer, but I did fall asleep and felt much more positive in the morning. I still don't know that I got a direct answer, but I had more energy to move forward.

And what's the alternative? Lie around, wallowing in self-pity and depression? Yeah, that will help T. And that's no way to live this life that I still believe is a gift.

When T was first diagnosed, many friends told us that God had chosen us for this beautiful child because we are wonderful parents and could handle it. That God has some purpose in this diagnosis that we don't understand now, but will be made known. There are times that I do believe this. I think this idea has some merit, and is, in an odd way, comforting when facing real challenges. Much of the time though, I think "If that's true, then kiss this autistic mommy's ass, God. Why would you do this purposefully not only to my beautiful son, but hundreds of thousands??? What kind of loving God does that shit?"

So, that theology doesn't always work for me. Most of the time, I believe that God is right here along side me, worried, scared, angry, and desperate for hope. God is also in my son's laugh and smile, and in those fleeting moments when I get perfect eye contact and interaction. Sometimes, there is God. God is also hoping for help, for improvement, for solutions.

There was one spooky time too, that may sound like Anne Lamott's transforming experience. I was at my wit's end with T - this was a while back - and I was at the end of my very long fuse and was about to lash out at T to get him to stop screaming. I knew I just couldn't do it to him, but I was beside myself with frustration and anger. So I imagined Jesus - yes, I mean Jesus - sitting there in the kitchen with me. He wasn't in his white glowing robes with the halo around his head - he was comfortably attired and sitting at my kitchen table. He didn't say anything, but looked at me, understanding. His calming presence spoke volumes. Needless to say, T didn't feel my wrath that day, nor has he ever.

And yes, through these tough times, beautiful people who are true blessings have come into our lives that never would have otherwise. Beautiful things happen - not only despite his autism, but because of it.

I also acknowledge that while we face huge challenges, no one is going to die over this. Our home hasn't been blown away by a tornado or hurricane. We have a loving and incredibly supportive family. We have more than enough food to eat. I do manage to keep things in perspective about 98% of the time.

So, I will still believe in God, and will still be in a relationship with God. I may get pretty angry with Him (sorry, still liking the image of God as man), but I figure even the psalmists got pretty mad with Him and yelled and questioned, so darn it, I can too. I think God can take it. He better.

Doctor's reaction to OAT results

2007-10-12T16:22:00.000-04:00

So I spoke with our DAN! doc. She's overworked - the only DAN doc in the area - but God bless her (yes, God & I are on speaking terms again) she spent 40 minutes on the phone with me Wednesday afternoon.

At first, she wanted to agressively go (sorry for the split infinitive, Mom) after the yeast & bacteria with more prescription meds. I said "Um, no." This diet doesn't seem to be helping, and I don't want to keep trying the meds that didn't work. So she told me one of her favorite quotes from Sid Baker (queue the angelic choirs singing), one of the founding docs of the DAN movement: The Child is the Best Lab. So we looked at the one biomedical treatment that has worked, and that is the goat yogurt. The stinkin', blessed goat yogurt. It is the one thing that has made his poops more formed, so we are keeping that. I'm going to introduce slowly some benign foods back into his diet. Rice is first. We're going to keep the massive doses of probiotics and a natural antifungal going (Saccromyces Boulardi, for those of you in the know), and monitor him for a few weeks. In other words, completely natural interventions.

My sister, a brand-shiny-new DAN doc, will come for a visit in mid-November. At that point, she'll help us administer his first Methyl b-12 injection. This is a treatment that has had really remarkable results with some kiddos, so it is definately worth a try. My sister has already ordered some for herself (the shots are totally harmless) and she'll do them on herself for awhile. Then, if all goes as planned, she will give me the shot and Rob the shot too with T watching. It's a small, thin needle, and I'm told that it really does not hurt. Some parents give the shots to their child when sleeping, but Rob & I don't want to take the chance of him waking up and being scared.

So that's where we are. I can't give up on this yet.

This has been tough on us all - I feel like I have nothing left that is interesting about me, except that I have a son who is autistic. I have no interest in pursuing voice students, going to a new church, making new friends, all because it is all so much damn hard work, and I'm so weary of hard work that I just want to do withdraw. But I will do all these things eventually, because damnit, I am a positive person and I do think there is hope. I'm just tired. Really, really tired.

This has also been hard on Rob as well - watching me disintegrate into tears and frustration over all this, and nearly losing my mind. He would like to quit it all because he sees how hard it is on me AND he sees that it isn't having the results that we hoped for. I completely understand. He's sticking with me, but I see how hard it is for him to do so. I feel so very blessed to have him by my side through all this - I hear the statistics of percentages of marriages that end in divorce that have an autistic child (80% and I'm not kidding) - and I count myself lucky that we are not headed in that direction.

New OAT test results

2007-10-09T22:14:00.000-04:00

This sucks.

After seven months of the Specific Carbohydrate Diet, 2 rounds of vancomycin (antibacterial), 2 rounds of Diflucan & endless Nystatin (antifungals/yeast meds), Thomas still has bacteria & yeast overgrowth. Not only that, the numbers are higher. Worse, in other words.

This isn't working.

And I've spent so much time, money, energy...god damn it.

Speaking of God...well, shit. I don't want to. I don't think I'm on speaking terms right now.

I'm going to bed. Another morning of swollen eyelids from crying myself to sleep. Fucking hell.

Jenny McCarthy

2007-09-27T12:40:00.000-04:00

Jenny McCarthy has written a new book which tells the story of her son's autism and how she treated it - and recovered her son. She is an AWESOME new presence for the biomedical treatments for our kiddos. Below is a link - she was with Holly Robinson Peete and Dr. Jerry Karztinel on Larry King Live last night. By the way, Dr. Karztinel was one of the featured docs at the DAN conference this spring. I loved him - so kind, so genuine. AND...he was a mentor for our DAN doc who is treating T here in our new city.

I'm so glad to see the DAN/biomedical interventions getting more press. Okay, so the jury is out on whether or not its a success story for our boy. But it IS successful for thousands and thousands. Keep it up, Jenny.

http://www.cnn.com/video/#/video/bestoftv/2007/09/27/lkl.autism.treatments.cnn

I love you

2007-09-22T14:00:00.000-04:00

This morning, I went into T's room to get him up and to the bathroom before he soaked through his overnight diaper, as I do every morning. Thankfully, he is in a phase where he sleeps and sleeps in the mornings, so once a week on Saturdays, I am able to sleep in, too - for the first time in 6 years. Nice! But this does mean that occasionally the bed is wet, so I don't like to delay things too much.

So he was pretty groggy when I first went in. He hummed a little bit of a tune, which I recognized as the song I sing to him at night. He LOVES this song. So, I croaked out the song to him in my still groggy state. When I was done, he looked at me and said "I love you."

He wasn't singing it. I sing a song to him that starts off "I love you Lord Jesus, look down from the sky...", which he also loves. But he wasn't singing this time. I say "I love you" to him almost every night before he goes to bed, but he's never echoed it. He may have actually told me that he loves me this morning.

He may have actually told me that he loves me.

Autism - The Musical

2007-09-22T13:52:00.000-04:00

No, I'm not kidding. This is the name of a new documentary that I went to see yesterday. I confess that my first reaction was that it was going to be some Simpsons-style or even worse South Park style comedy, and I rolled my eyes. But I read the reviews, and decided it would be worth it to go. I'm so glad I did. It was, admittedly, an emotional rollercoaster ride for me - laughing, sobbing, empathizing...but I am glad I went and I definately recommend it to anyone who is interested.

It follows the story of 5 autistic children and their parents as they take part in the Miracle Project, . We learn their life stories and their family struggles. It is honest, brutal at times, and mainly very positive about the abilities (and yes, challenges) these kids have.

Just one more way the word is getting out about our kiddos.

Goat Yogurt Update

2007-09-20T21:33:00.000-04:00

If you don’t want to read about poop, don’t read this post.

Okay. So the good news is that the goat yogurt does indeed seem to help T have normal, formed BMs for the first time in MONTHS. This is an incredible thing for him and for me – having to change soupy poopy Pull-Ups that smell terrible and get all over T and me and stink up the house & garage and give him diaper rash has been a 9 month nightmare. Every time I change a Pull Up that is full of diarrhea or soft-serve poop, I feel just awful that we’re subjecting him to this discomfort with this diet. This was supposed to heal an inflammed gut, but is it? Honestly, Rob & I are so ready to give up on this particular diet. But the goat yogurt firms up those stools, and plop, they drop right into the toilet without leaving much trace on the Pull Up. Hard to believe I’m writing this, but I’ve never seen such gorgeous poops as when he eats the goat yogurt.

Bad news. One time, only once, I added homemade raspberry jam to the creamy, smooth yogurt. Texture change. Seeds. Yucky. He took one bite, and it was over. Okay, so I threw that dish out and made a fresh serving with lovely, smooth strawberry jam. Too late. He would have nothing to do with it. Of course, I’m frantic to get him to eat it, so I’m insisting – being pleasant & upbeat – but not letting down because DAMMIT, the stuff give him gorgeous poops and I’ll do anything to keep that up. Nope. This goes on for a few days, with me nearly exploding with desperation to get him to eat, and him flatly refusing – keeping his lips tightly closed, turning his head away – then the showdown ensues. Now he won’t even have it on the table near him without screaming “NO YOGURT! NO BITE! NO NO!”

I want to cry & give up.

Sidebar: a year ago, he would not have been able to verbalize his intentions this clearly. Amazing. Diet? Verbal Behavior? Just normal development with aging?

So, plan B. I hide a mere ¼ tsp of yogurt in his walnut butter morning & night. He doesn’t seem to mind the taste, and remarkably, a grand total of ½ tsp each day does appear to be maintaining better poop consistency. Not gorgeous, but better.

I’m also putting the yogurt with the strawberry jam on the table next to his plate at breakfast & dinner. No expectations – just accept its presence on the table. So far, so good. Next step: have him just touch the spoon without melting down. Then pick up spoon. Put to lips. This will take some time. A month, perhaps, as our VB consultant predicted today.

And all the while, Rob & I are still poised & ready to give up on this dietary intervention and try something else. I get myself into such a “Can’t give up” hole, and Rob keeps me grounded by looking at all this as a researcher, which is what he is, after all.

The plot thickens. More when there is something to report.

OT and it IS a small world

2007-09-20T21:10:00.000-04:00

FYI: OT can stand for Occupational Therapy or Occupational Therapist.

I took T to a local large rehabilitation/therapy clinic in our new city today for an OT evaluation. This is the first step in getting him set up with weekly OT sessions. OT is an important part of the whole equation of therapies for him; his OT will help him with his auditory processing challenges (eventually getting back on track with Theraputic Listening – see earlier blog post), sensory issues, motor skills (like writing ) and with basic/everyday skills like buttoning, snapping, brushing his teeth, etc.

I was really pleased with the OT we met today. The SLP (Speech & Language Pathologist) from his new elementary school recommended this particular therapist because they had worked together at this large clinic before she took the elementary school job. Anyway, the OT and I seemed to click, mostly because she demonstrated to me that she was an old pro with autistic kiddos. She wanted to know more about his diet and the other biomedical interventions we were doing, and knew enough to ask “Is he alternating between Nystatin & Diflucan?” Wow. She knew about the Specific Carbohydrate Diet. She’s worked with kids who have done the SonRise program, Floortime, and the PLAY project, as well as Verbal Behavior. She likes them all, and uses different techniques from each in her approach. What a relief, truly. I felt like she knew at least as much about autism specifically as I did and we were already speaking the same language. Can you hear me exhaling? Whew.

So then we started talking about the town that we moved from, and she said her sister had lived there – and worked at the university. “Oh?” I said. “What department?” “Higher Ed”, she said, and I about flipped. “My husband is ABD in Higher Ed there. Who is your sister???” Well, when I heard the response, I dropped my jaw and said “Um, yeah – I know her. Rob knows her, and she was one of my Pampered Chef customers when I was a consultant a few years ago!!!”

What are the chances of that? All together now: “It’s a small world after all, it’s a small world after all, it’s a small world after all, it’s a small, small world.”

Goat yogurt

2007-09-08T22:58:00.000-04:00

So the cow's milk yogurt was a digestive disaster. We quit after three days of giving him - get this - only 1/8 or 1/4 tsp/day. That's IT. I'll spare the gross details, but his diaper had enough evidence to tell me that cow's milk yogurt was NOT agreeing with him.

Goat's milk yogurt next, and yes, it is still homemade. Firmented (aka cooked) for 24 hours to get lots of good bacteria going. That is the whole point of this: get good bacteria in the digestive system, replenishing what he doesn't have, to help with absorption of nutrients from the food he eats.

The first attempts at making yogurt, especially the very first time, were so nerve-racking that I nearly had a nervous breakdown. Heat the milk, but ONLY to 180-185 degrees and if it goes over then you've KILLED it. Oh, by the way, the milk should be raw milk. (That's super easy to find - NOT. We'd need to buy a share of a goat from a farm nearby, and I ain't doin' that until I know it works for him.) Then let the milk, which has not gone above 185 degrees, cool to between 65 & 70. Then add non-dairy yogurt starter, cook at 105-110 degrees (again, don't go above 110 or you'll KILL it) for 24 hours. Yep, 24 hours. Thank God my mother gave me her yogurt maker so I don't have to come up with some twisted way of keeping this fragile stuff at the precise correct temp for that long. Refrigerate for 8 hours. Then (no, we're not done yet) I have to drain the stuff because it's so liquidy. That takes another 8 hours. By the time this process is done, it really is a gorgeous and tasty plain yogurt, but this is nuts.

I'm nuts too, but I'll do anything if it might help him.

We are on our second batch of goat yogurt, and the BMs are getting less and less, well, loose. He's actually starting to eat it on his own now too. Good sign. Stay tuned for continued updates.

Tooth Fairy

2007-08-21T20:20:00.000-04:00

T lost his first tooth today! It had been loose for at least a month, but today it was finally just hanging my a thread. I admit to helping it out a bit! Once it was free in his mouth, he tried to chew it - but I retrieved it for the tooth fairy pillow tonight. He was really happy to see his tooth in my hand! He smiled and jumped a little bit, and I gave him a big hug. What a cool moment.

We've been preparing him for this for a long time - ever since we noticed that the tooth was loose. We've been telling him what amounts to a "social story" - these are little stories that explain a social situation to a child who doesn't understand typical social situations. (We have social stories for going to the grocery, using the toilet, and we wrote one for our move, too.) It amounted to something like this:

Your tooth feels loose. This is okay. This is what your baby teeth will do. Your baby teeth are the ones you have in your mouth now. One by one, they will all get loose and fall out, and that is okay. New, big boy teeth will grow in where the baby tooth was, and they'll be your big boy teeth, just like Mommy's and Daddy's.

Ultimately, the best thing to do is print each sentence on a separate piece of paper and put a simple picture illustrating the sentence on that page. You create a book this way, and that becomes the social story.

So now the question is this: do we play up the tooth fairy deal, or would that be too confusing? I mean, people with autism take things quite literally, and telling him that there is a tooth fairy when there really isn't one is a tough call. We have the same issue with Santa. Well, what we've decided to do is tell the story about the tooth fairy and Santa, tell him that it is indeed a STORY so that there isn't some major trauma later about Mom & Dad telling him to believe something that isn't true. I guess this is an issue for most kids, but it seems particularly challenging when these kids are so literal in their understanding that it may be tough to separate fact from fiction.

Anyway, it's been a big day for our little guy...who is getting bigger all the time. I'm so proud of him!

Requests

2007-08-21T20:10:00.000-04:00

The really super news is that T can actually ask me to come outside and play with him! It really is so incredibly cute and it melts my heart each time. He'll say approach me, look me in the eye, and say "Let's go outside" or "trampoline", and looks so pleased with himself when I follow him outside. He'll continue to make sure I'm with him until we get to the trampoline, at which point we both get on and jump. Great fun.

The thing that just makes my heart ache is when he approaches me JUST as I am about to sit down to eat! He's done this to me at least twice now, and it just kills me to have to say "I'll come soon, but Mommy needs to eat now." I mean, each time it's been when I've been starving and working hard getting breakfast or dinner and am just really needing to sit down for a few minutes. At least tonight, he didn't have a meltdown when I said he needed to wait - he just layed down on the floor (sign of frustration and protest), kept asking me to go out, but was at least was not too anxious. The minute I was done with my last bite, he was up again, looked me in the eye again and said "trampoline." He had to have been watching my every bite!

He's brilliant.

Don't go a-changing the dinner routine

2007-08-04T23:17:00.000-04:00

One of the stereotypes of people with autism is that they are very rigid in their schedules and that routines are a big source of comfort. This is true for T to some extent, but most of the time he's a pretty easy-going guy. But yesterday I inadvertantly threw him a curve ball, and I learned my lesson!

We had a lovely afternoon shopping at a local mall - new to us both, so there was lots to explore. He's usually "on edge" (as I describe it) in situations like this: pretty stable, but very active with lots of wandering, galloping, vocalizing & flapping of hands. I try not to test him or thwart him too much in these situations. We can have a very nice time if I follow his lead and gently direct him when necessary. I'm used to this and really, I don't even see other people staring anymore. Most of the time, people get that he's different and are really nice about it, and that is lovely. I've found this to be especially true in our new city.

So after about 2 hours of meandering - and he was great, stayed with me or at least nearby - we decided it was time for daddy to meet us at Fancy-ish Chain Restaurant. Rob packed his dinner at home (what a gem of a guy) and we were to get a table. In normal, everyday circumstances for typical folks, this is not a big deal. I just didn't think about the fact that we'd be sitting down at a restaurant table without his dinner immediately available.

We sat down, and T reached for the backpack. Immediately, I knew this could be cause for trouble. Nope, I don't have your dinner. Daddy is bringing it. So T gets agitated and leans further over to get backpack. I show him there is no dinner in there. Daddy is bringing it. Oh geez, he's escalating. T is surely thinking "We're at a restaurant, and when we do that, Mommy always has the blue lunchbox with my dinner...only this time, she doesn't! That's FRUSTRATING and I'm confused! Why won't she give me my food???" and the crying and screaming start. Nothing to do but take him out and let him scream it out outside of Fancy-ish Chain Restaurant. Thankfully, within about 2 minutes, Daddy saves the day by arriving. Hooray Daddy! So, with his face all splotchy from crying but with renewed calm, we go back into the restaurant - and all is perfect for the rest of the dinner. All is well because he now has his dinner in the appropriate manner.

Lesson for Mommy: don't go a-changing the restaurant routine! I got it.

Night-night, Norma

2007-08-01T22:25:00.000-04:00

Today I spoke with a friend on the phone who has valiently fought stage 4 breast cancer for nearly 4 years. Over time, the cancer had spread to her bones and her liver, and I learned today that it now is apparent that her fight will soon be over. She has been T's craniosacral therapist while we lived in Small College Town, and as many therapists do, ended up helping all of us and had become very much an integral part of our lives. She even took voice lessons from me, so the relationship was mutually helpful and beneficial. She is one of T's favorite people, and he mentions her often, quite out of the blue.

As I spoke with her today and thanked her for being in our lives and for everything she had done for us, she weakly said "Now, don't you ever say goodbye to me - just say goodnight." I did - and added "Till we meet again", and promised to call again soon. When I was off the phone, I told T that I was just talking with Norma. He looked at me, smiled, and said "Night-night, Norma."

So, night-night, Norma. And if this is indeed your time, may you be in the arms of the angels.

Look where I found him

2007-08-01T08:43:00.000-04:00

He's always been fascinated by the clothes drier (it spins clothes, vibrates, has many buttons to push...) but yesterday, they became one. Good thing it's a sturdy machine! (And it's a good thing the On button is outside and above, where he can't reach it!)

We pet sharks today!

2007-07-30T22:00:00.001-04:00

I took T to our city zoo today, since things have calmed down a bit with the unpacking and phone calls and all the errands that go along with setting up a new house. He had a super time! We only stayed for about two hours...one of the beautiful things about being members of our city's zoo is that you can go for two hours and leave when you've had enough, knowing that you can come back the next day for more! Since it was a weekday, it wasn't as crowded as a recent Saturday was (major tough time at the zoo that day) and he was a happy guy. The new Oceans exhibit was actually easy to get into today, and the main attraction of that is this awesome shallow pool where little sharks swim around and you can reach in and, with two fingers, pet a shark! WOW! Well, anything to do with water is a-okay with T, but what was really cool was seeing how much he watched the sharks go by, and how excited he was when he actually go to pet one. He jumped and smiled and gave a little whoop of excitement - just like every other kid (and adult, I must add) did!!!

The penguins, dolphins and polar bears were sources of great entertainment, too. They were all visible from the outdoors and from a viewing area inside, where you can see them swim underwater. We spent an hour just doing that.

On the dietary side, I made yogurt from scratch yesterday (actually, Saturday and Sunday) and gave Thomas his first taste of dairy product in 6 months. Just 1/8 tsp to start - it is supposed to be very potent with good probiotics, and can be overwhelming for healing guts at first. And it was - we had a looser stool this afternoon than we've had in a few weeks, so I'll keep my eye on it. It is made from cow's milk, so if this doesn't agree with him, we'll try goat milk yogurt.

Six!

2007-07-28T10:29:00.000-04:00

Monday was T's 6th birthday! He really is a big boy now - and getting bigger all the time. A happy time was had last weekend with three grandparents, two cousins and an aunt & uncle coming to help celebrate. It was fun to have the house full - and to see our nephews playing on the new playset we got for T. He takes his time with new playground or swingset-type activities, and seeing his cousins dive toward this playset and have such a good time on it was good inspiration for him - we now uses the swing and can climb up the slide and slide down. No, he's not using the ladder or ramp yet, but he will - and we got this for the long haul for him. His first OT (whom we called for guidance when shopping for the playset) said that he may be using this for several years longer than a typical boy; that even when he comes home from school as a teenager, he may need to swing hard for a while to get out his energy from the day, so buy something that will last and will hold up! So we did - and it was great to see it being used by all three boys (and their parents as well!) I think the playset was happy, too.

No birthday cake for him this year - just one of his muffins made with nut flour with a candle stuck in it! He smiled at the lit candle, and even tried to blow it out this year. Very cute. He sang a few lines from "Happy Birthday", but no one else was allowed to - it's still a touchy song for him - he still covers his ears and sometimes shrieks when other people sing it. So, we just said "Happy birthday" to him, and it was fine.

He is getting more and more comfortable in our new house all the time. This week he has discovered the pool table downstairs which came with the house. He loves rolling the balls in to the corner pockets and watching them roll down - very entertaining! He smiles and laughs and has a great time. Not every kid has a pool table in his playroom! I'm glad he's warming up to the basement - all his toys are down there, and that is where his Verbal Behavior home program will be set up until a space opens at the school.

Ah, Verbal Behavior! We've had to take a two-month hiatus from this wonderful therapy - due to the move and vacations, etc. - but we'll start back up in a week. I am eagerly anticipating the return of VB to his schedule - it's been so beneficial for him, and frankly, it will be nice to have a few hours that I'm not solely responsible for his entertainment and education. It's been driving me nuts this past month - unpacking, organizing, all the stuff that comes along with setting up a new house - all the while knowing that he is just sitting in the family room spinning his toy windmill or similar toy, idle, idle, idle...but what can I do? I know he's happier when actively engaged - and he's been very on-edge at times because he's bored and gotten into a zone where he's spent so much time in his own world that it's hard to break him out of it - but again, there's only so much I can do. I keep telling myself that this month won't kill him...it may set him back from where he could have been, but again, no one could do VB this month, period. And I certainly couldn't keep up with it with everything else I've been doing, and I keep telling myself that it's summer vacation for him, for crying out loud. The pressure I feel...the pressure I put on myself...my biggest struggle.

So, T starts VB 1/2 day through a private school in a week, and kindergarten the other 1/2 day in the public schools the following week! Hooray.

And Rob & I are the parents of a six year old boy. A very wonderful six year old boy! Happy birthday, T.

Good news!

2007-07-08T14:26:00.000-04:00

We won the insurance battle! Turns out that our home state has an Autism Insurance Mandate which kicked in for T's speech and OT - every last session of it from January-April. This is a HUGE-O relief, because by the time we were billed for all those sessions, we owed the hospital over $5,000.00. That is a lot of money. We also got a check for a compounded medicine which they weren't going to cover, but after I called and called and got bounced around to different people each time, each with a different answer (are compounded prescriptions covered? yes or no?), lo and behold, a check for the prescription arrived a few days ago. So what the heck - I'm not earning money right now, but I've just saved us a bunch of it with all my phone calls.

Thing is that no one at the hospital, therapy clinic, or insurance company knew about the state mandate. Our pediatrician didn't know about it. I just happened to hear about it at a meeting I attended several months ago. I forgot about it until about a month ago when I came across the notes I took from that meeting. I bought it up with the insurance company, and suddenly their whole tone with me changed. So here we are, and I'm feeling quite pleased with myself...but also wondering - yet again - about all the families out there that don't know about this. I have this vision...maybe it's my new calling...of having some sort of a guidance service for families with a child newly diagnosed with autism. There is so much information out there, and you are expected to be an expert immediately on every last bit of it...what if there was an organized, easily accessable group/company/organization that could be immediately dispatched to these families to help them navigate all this?

Yeah, I'll do all this in my spare time. Well, who knows?

The other good news is that we are settling into our new house in our new city nicely. T has actually been a real trooper - slept through the night on the very first night and every night since!

I am going nuts though, knowing that we can't start up his Verbal Behavior program until early August due to vacations and other conflicts, and school doesn't start until mid-August. So he spends lots of time just entertaining himself, which usually means rubbing his fingers together and grunting or saying "Uck, uck, uck...", or spinning a toy, or wandering around upstairs, playing with the toilet seats or our ceiling fan. It is a lot of work, unpacking our belongings and finding a new home for everything...and my old friend Motherly Guilt has settled in very well, worrying about all this un-engaged time he has while I'm working on the house. I seem to recall a similar post about this around spring break time, so this is nothing new, but still very real. But we've already installed a cool trampoline in the backyard, and just yesterday purchased a wooden swing/play set for him, which is sturdy and big enough to grow with him as the years go on. I'm looking forward to it being installed in a few days! I mean, I swing back & forth from worrying about all this down time and realizing that it is summer, after all, and every kid deserves some down time. So this will be Mom & T month, which will be good. We're almost done with all the boxes and unpacking, then we can at least go find a playground somewhere nearby.

In the meantime, I'm going to enjoy my victory with the insurance company. I also want to go see "Sicko" really soon!