Looking forward : Goals and self-advocacy

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

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

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

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

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

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"

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

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!

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!!!