Monday, July 22, 2013

Preparing for middle school

I mentioned in one of my last Autism Understanding and Acceptance posts that Thomas' hours for ABA were reduced by Anthem.  With the help of some contacts, we were able to get his full time hours extended to mid-August, instead of the reduction starting July 1st (insuance cut his hours so he could get services from JULY).  Rob and I decided not to fight the reduction in hours with this new start date, and to give middle school a try.

This equally terrifies and excites me.  He will be at his home middle school for most of the day, from 9am to 2:36pm.  Not 2:35.  He will then go to BACA Prep from 3:00pm to 5:30pm, which will not give him the 20 hours of ABA for which he is approved, but will allow us to have dinner together as a family at a reasonable time.  We just couldn't see keeping him at BACA until 6:30pm.  That would be such a long day, and then we aren't eating until at least 7:30, which doesn't work for us - it's just all too late.

It's all a big experiment.  We are thrilled with his teacher for next year, and truly feel that he is in the best possible situation with this school.  We had a very positive and easy Case Conference in May. And I remind myself daily that it is not going to be perfect , that I can't keep him safe and protected from teasing and harm and hurt feelings for his entire life (wait, can't I?), and that I need to give him opportunities to rise to the occasion and spread his wings.

Oh, this is hard.

On a lighter note, there are other considerations to be made when preparing for middle school.  It is time to retire the adorable Gymboree underwear.  It's going to be enough of a challenge for him in the bathroom because he hasn't quite gotten the swing of NOT dropping his pants to the ground when using the urinal.  We're working on this important life skill quickly.  But we also just tossed the Gymboree undies with turtles, dinosaurs, baseballs, etc and switched them out for Fruit of the Loom briefs in dark solid colors or stripes.  Very cool and certainly not baby-ish.

I figure that he's going to get teased for something, so why invite it with something so glaring as cutie-patootie undie-pants?

Sunday, July 14, 2013

Quilt square, singing in church, zoo roller coaster

Sometimes an ordinary day turns out to be extraordinary!

The plan for our Sunday was going to church, then joining in the church group trip to the zoo.  Thomas attended Sunday School before the service, and the project today was making a prayer quilt.  Each kid got to create their own square, including Thomas.  We heard that he had drawn two hearts on his square, one for Mommy and one for Daddy.  (*swoon*)  But even better, I just got this Facebook message from the daughter of a friend of mine at church:
Hi Suzanne! It's M (K's daughter) and I was in the room today with Thomas. When we were preparing to pass out the stuff to make the quilt he was reading his Disney bracelet to me and telling me about Disney World. Also, his quilt square had two hearts he drew on it saying that one was for Mommy and one was for Daddy. After telling my mom this, she said that I should tell you because you love hearing about his day in Sunday School!
Yes, dear young woman, I DID want to hear about that!  Hooray!  He told her about Disney?  That was over two years ago!  And what did he tell her?  I will need to follow up on that.  Thank you, thank you lovely young woman for talking with him and asking him questions and working with him!  The youth of this church give me such incredible hope for the future.

During the service, he was his usual snugly self.  He cuddles in with either Rob or with me for good chunks of the service, which truth be told, is one of the main reasons why I am not singing with the choir full time.  How could I voluntarily miss that time?  And if I had not been there, I would have missed him singing along with the entire Doxology today.  Yes, he was making up syllables instead of singing the words, but it was so entirely cute...and then came the last line.  The sopranos in our choir go up an octave for the last phrase of Halleluias, so of course he did too!  He was pitch-perfect.  Rob and I stopped singing, stared at each other in disbelief, and then laughed and laughed in amazement and joy!

Sack lunches were eaten at church, then off to the zoo we all went.  After the first obligatory wandering through the Oceans exhibit, he would do nothing other than head straight back to the train.  While we were in line, he was watching the roller coaster quite intently.

I'm going to have to do some background info here.  He had always liked roller coasters.  We started on State Fair kiddie coasters, moved up to the zoo coaster, then even got gusty enough to ride Big Thunder Mountain at Disney.  He loved it, and even wanted to get right back on, which we did.   He loved it the second time.  He likes coasters!  Great!  We heard fun things about this new coaster at Animal Kingdom called Everest: it looks like you are going to go over a cliff, but you back up "a little" (remember the "a little" bit), see a Yeti, then go forward and fast through the rest of the ride.  Sounds fun, right?  WELL, let me tell you, there is nothing "a little" about going BACKWARDS FULL SPEED AND IN A CIRCLE SEVERAL TIMES IN THE DARK.  Okay, once that was done, the coaster was fast and fun, but holy SHIT were we sick afterwards.  My dad, Rob, Thomas and I had to sit for about 30 minutes to recover while my sister found some Sprite for us to sip on to revive us.  After that, Thomas would have nothing to do with any roller coaster.   We even pressed it once last year, getting him on the zoo coaster - thinking that once he experienced that roller coasters didn't have to scare the crap out of you - he might like them again.  Nope.  "Get off.  All done.  Get off," throughout the entire ride.

I saw him eyeing the roller coaster nearby.  I asked him if he wanted to ride it.  "Yes."  I asked him a few times, several minutes apart.  The answer was yes each time.   As the cars pulled away and we were going up the first hill, I told him how happy I was that we were doing this, that it was going to be fun and he was safe.  He loved it!  Hooray!  And two and a half years of guilt for taking him on that horrible Everest evaporated away.

Wednesday, May 01, 2013

Autism Understanding & Acceptance 2013, Bonus Day: THANK YOU

The response I have gotten from this series of Facebook posts has been overwhelming to me. THANK YOU, all of you.

I had no idea what I was starting! It started as a fun little idea I had as Autism Awareness month began 30 days ago. I wondered how I could make this month actually increase awareness, because I know that when I look at numbers & statistics about autism I get numb. I started posting Thomas’ story, which turned into our family story, and all of your positive feedback and the love that was being sent propelled me on. I looked forward to every night, planning what my next topic would be and what picture I would use. It turned out to be quite a pivotal month for me. And honestly, while the feedback has been incredible, perhaps even more beneficial to me was the practice of writing on a regular basis, and being able to look back now and see our journey as it stands so far. We get so busy with today’s demands that taking the time to look back and see progress just doesn’t happen.

I will compile this into some manner of finished product. I have no idea where it will go from there, but I don’t necessarily need to know the final destination in order to take the first step.

Thanks again. I’ll keep posting as I have updates about insurance coverage for ABA, IEPs at school, and more exciting new things Thomas is doing. Hugs to you all.

Tuesday, April 30, 2013

Autism Understanding & Acceptance 2013, Day 30: Where we are now

So, what is up with Thomas now? He is turning 12 this summer, a fact that is nearly inconceivable to Rob & me. He has been a client of the BACA/under Carl Sundberg’s supervision full-time since November of 2007. We ironed out a part-time situation for Thomas to be in school and receiving ABA services, but the more we saw how he progressed with ABA, the more saw how important it was to withdraw him from school for a while to let him really blossom as much as he could with this “Cadillac of Care”. This did break our hearts a bit to take him out of public schools because we are public school people – we believe in them and support them and have many, many friends & family who teach and/or are public school administrators. God bless them all. But we simply could not ignore how much progress he was making with ABA, and made the decision to go all-out with it until insurance reduced hours or we felt he was truly ready for full inclusion.

That decision was one of the first of many in which we had to set aside what we wanted for him, and instead act on what Thomas needed.

We have just learned in the last week that Thomas’ ABA hours will be cut. Not completely, I am glad to report. As it stands today, as I write at 1:55pm on Tuesday April 30th 2013, his hours will be reduced from 32 down to 20 a week. I am this specific about the timing because we believe we’ve just caught our medical reviewer in a bit of a…um….falsehood when making the determination to reduce his hours. We’ll see what happens now that his primary care doc and the clinic take this information and run with it. We can live with a reduction in hours, and even look forward to Thomas having the opportunity to show us what he can do in the public schools. It will still undoubtedly be in what is referred to as a “self-contained classroom” with as much inclusion time as possible. What we can’t live with, regarding the reduction in hours, is the date that our insurer has randomly chosen to start the reduction: July 1, 2013. I thought the point of reducing ABA hours was to allow him access to the public school education to which he is entitled…so how does it make sense to reduce hours at exactly the time of year when the school doesn’t provide services? So, we appeal, make phone calls, take copious notes, and document, document, document. So it goes. These things come in waves, and it is one of the primary reasons why I am currently employed half-time only.

Speaking of things coming in waves…with the news of a reduction in hours, Thomas is indeed headed back to the public schools. He therefore needs an updated IEP and honestly, we are starting from scratch because he hasn’t had a full IEP in years. We’ll need to iron out what he requires to be able to benefit from a public school education, what they have to offer, and what creative ways we can work together to make this opportunity more than just glorified child care for him (remember my post about his being cute & smiley and very able to entertain himself for long periods of time?) We have confidence in our school district – I personally would not have him anywhere else. We’ve heard wonderful things about his teacher for next year. And my years working at ASK (About Special Kids – have prepared me well to go into this Case Conference as an equal player. We will be the collaborative parents we always have been, and I do believe we will work something out for him.

And the other wave…in the midst of all this, earlier this month Thomas was finally been targeted for the Family Support Waiver in Indiana. We were put on that waiting list December 14, 2005. What are Medicaid Waivers? In a nutshell, they are the alternative to institutions. Remember Rainman, and where he lived before Charlie took him on their road trip? That’s where individuals with disabilities lived in previous generations. In fact, it used to be that once a child was diagnosed with autism, mothers were told to institutionalize their child and go have another baby to replace that one. Nice.

Coming back to waivers, they provide staffing, services and supports so that individuals with disabilities can live in their homes & communities and live as independently as possible. So this is good news. But it is mixed news for us, because with this recession and the ever-increasing numbers of people diagnosed with autism and other developmental disabilities, the programs have had to be changed drastically. So when we got on the waiting list, the services we were expecting would have allowed for a young adult Thomas to have enough supports to live in an apartment with a roommate and have staffing to help with grocery shopping, transportation, bathing, dressing, etc etc etc for the rest of his life. Now the funding will allow Rob & me to provide some “meaningful day” sorts of supports for him, but the finances will not allow Thomas to live independently. So yes, as of now, he will be living with us until both of us turn 80 or we are both gone from this world. That’s not being dramatic – those are the facts. And with the tide of cutting funding to social programs like Medicaid, this is what happens. Now I know that the recession will end and the waiver programs may change again – they certainly have completely changed once already in Thomas’ lifetime – but that’s where things stand now.

Rob & I have taken many steps already to assure Thomas will have what he needs when we are no longer here. We have never thought that the government would take care of things completely for him. It’s our responsibility and we take it. We know more about special needs trusts, guardianships, letters of intent and wills than we ever thought we’d need to. Those things are all set.

So, there it is – for now.  I have decided two things: one, there will be a bonus post tomorrow – a quick one – and two, I’m opening this up for questions. Private message me if you have a question. I will reply either personally, or if I think it is appropriate to answer as another post, I will do so. See you tomorrow.

Monday, April 29, 2013

Autism Understanding & Acceptance 2013, Day 29: What's causing it?

Yep, I’m going there. But I may surprise you with what I’m going to say: I don’t know. And I could just stop there. But no worries - I have plenty to say on this matter, and I’m sure some of you will not agree with me, or will feel the need to argue your point, or bring up something you think I haven’t considered yet or don’t know about yet. I’m girding my loins for responses. Believe me, I’ve lived in this volatile world now for seven years and I’m used to it.

Here’s the shocker: it really doesn’t matter to us at this point. It’s too late. How it happened is behind us. Rob & I are too busy maintaining Thomas’ needs day to day to spend much time worrying about why. I understand and acknowledge that it is of the utmost importance that research be done on what is causing the explosion in autism diagnosis…and when I say explosion, I mean explosion. When Thomas was diagnosed in 2005, the rate was 1 in 166 children. Then it went to 1 in 150. Then it went to 1 in 100. Now we are at 1 in 88, and if you just count the rate in boys, then it is and even higher rate. What the heck is going on here?

Here’s where the screaming starts. Vaccines. Toxic environment. Genetics. Change in diagnostic criteria for autism. Change in diagnostic criteria for mental retardation. Better screening and awareness. Increased diagnosing so students can qualify for IEPs. Having parents that are too educated. Having used an epidural. Food allergies. Just about anything you did while pregnant. (Did you breathe while pregnant? Well, yes. Well damn woman, what were you thinking???) Low birth weight. Premature birth. Having older parents. Hell, I even read that watching Baby Einstein videos causes autism.

You can see why there is screaming. No one knows. Or maybe better put: everyone has their theory, and everyone dismisses all the other theories, and pretty vehemently. No wonder Rob & I have withdrawn from all that mess & hollering. We’re too busy looking for the light.

So I will share what we know and what we believe. Thomas is fully vaccinated and had no noticeable reactions to any vaccine. He did not regress. He started showing red flags at about 4-5 months which we did not notice but other more seasoned parents of children with special needs did. We believe he was born this way. I had a healthy pregnancy. I have lived and breathed the world of autism for the past seven years, and have done a ton of research. I have come to the conclusion that vaccines did not play a role in his autism. Trust me. What we see in Thomas is so many of Rob’s & my personality traits just ramped up about 100 times. SO…we believe that for our boy, genetics got ramped up big time by something, probably something in the environment, and probably the big combination of toxins that are in our environment and not just one toxin or insult. The catch phrase, and pardon the current political incorrectness here: genetics loaded the gun, the environment pulled the trigger.

But here’s where we get super frustrated: we think there are several types of autism out there, and the reason behind all this screaming about causes is that we are looking for one cause of several different disorders that all look like autism. In this case, they all look like ducks & quack like ducks, but maybe it’s a big gaggle of geese, quails & blue-footed boobies mixed in with the ducks instead.

To make my point: take two kids diagnosed with autism. One developed typically until 12-18 months, talking, interacting, all the good stuff you look for (and that doesn’t make you want to flip-off the book “What to Expect the First Year”), but then heartbreakingly and suddenly regresses, usually closely coinciding with a well-baby visit & vaccines, and develops terrible gastro symptoms & behaviors which are corrected by a special diet. Another kid does not regress, but instead takes his/her time and eventually falls way behind peers (hence inspiring the flipping-off of the “What to Expect” book), has no gastro symptoms and does not respond to diets. Both are diagnosed with autism.

How does this happen??? Different onset, different symptoms, different responses to treatment, and yet we categorize them both with the same disorder? NO WONDER we can’t find ONE cause! There ISN’T ONE because it’s NOT THE SAME DISORDER!

So for now, we don’t know. And Rob & I keep looking for the light.

Sunday, April 28, 2013

Autism Understanding & Acceptance 2013, Day 28: What not to say – and what to say

During these last years, people have said many things to us to help, sustain, uplift and support us. All these statements come from loving hearts and have been made with only the best intentions. In my new career, I have had the honor to work with fellow moms of children with special needs and speak with hundreds of parents, grandparents, and caregivers all seeking guidance on how to raise their beloved child/grandchild. I have therefore, over the years, been able to hear these caregivers process things people have said to them, and I’ve processed through them myself. I thought that since I have your attention, I might bring some of these reactions to you for your consideration.

“God chose you for this.” Well, I’ve already written about that response. I believe my eloquent response mentioned something about requesting that God kiss my ass. Being told that God chose you for this just causes more downward pressure, more burden, and the implication that if we are feeling low that we are not only letting our child down, but letting God down too. That’s just what we need. When a parent of a child with special needs is feeling low, this does not help. We are already burdened, stressed, worried & probably feeling horribly inadequate. AND another thing…it also implies that God deliberately chooses to create children with disabilities, some of them living in pain or unable to voice their pain…and I’m sorry if my beliefs don’t line up with yours, but my God doesn’t do that crap.

“You’re so strong…I don’t know how you do it. I could never do it myself!” Well, we’re exhausted. Not feeling so strong. What is our choice? Sit back & do nothing? No, we either have to rise to the occasion or fail our child, period. It is true that we have to fight for just about everything a typical child gets handed to them: proper medical care, a Free and Appropriate Education, recreation opportunities, being part of a community, etc, etc, etc. And I’ve got a little secret for you…WE ARE EXACTLY LIKE YOU. We just got more than we bargained for. And I wouldn’t change my life or Thomas for ANYTHING, and I mean that. We don’t feel strong all the time and we get tired of always having to be strong and the thought that we are going to have to be strong for the rest of our lives is a bit overwhelming. And…realize that by saying you could never do it, you are really selling YOURSELF short.

“God doesn’t give you more than you can handle”. What a bunch of crap. Really. This one is one of my least favorites. Some parents have WAY more than they can handle. Trust me. The statement is categorically untrue. And saying it minimizes the trauma & stress of the person to whom you are saying it. Saying this to a parent who is near the end of their rope only accomplishes one thing: it makes the person saying it feel better. Because being on the receiving end of that statement when you aren’t “handling it” makes a person feel like they are FAILING COMPLETELY, even more than they were before they opened up to you about something shitty going on. This statement also completely separates the person saying it from the person hearing it. The underlying message is: “Thank God I am not you.” And my personal favorite response to this statement that I heard at my support group: “Well, I hope that God can help you handle a broken nose, because that’s what you’re going to get for saying that to me.”

Okay, I’ve told you what not to say, or at least what to consider if you are about to make one of these statements to an overwhelmed parent of a child w/ special needs. So what should you say? Here are some suggestions:

• Instead of “God chose you for this,” how about “God is with you every step of the way.” Even better: “God will be with you, and so will I.” Or, in honor of that awesome older mom that helped me: “Look to the light. There will always be darkness. Look toward the light.”

• Instead of ‘You’re so strong…”, how about, “It must get tiring/overwhelming having to handle all of this. Tell me more. Do you have time for coffee/lunch/drinks/a manicure?” or “Can I bring a Netflix & brownies over tonight after your kid goes to bed?”

• Instead of “God doesn’t give you more than you can handle” when a mom tells you about an overwhelming, unjust, or infuriating situation, how about “That really stinks. And to be honest, I’m not sure what to say to you right now. I wish I did. But I’m here and I’m listening, and you’ve got a terrific kid I’d like to get to know.”

I know it is scary not knowing what to say to us. I’d rather that you say something awkward than completely dismiss me from your life because you don’t know what to do. And please believe me when I say that the “things not to say” are always said with the best intentions. I just wanted to take the opportunity with this audience to give you some food for thought.

Autism Understanding & Acceptance 2013, Day 27: Why we’re lucky

There are some symptoms of autism with which we do not have to contend, most blessedly. Thomas sleeps through the night. This is HUGE. He’s always been a good sleeper, and when I hear stories of parents going for years without a full night’s sleep, I simply cannot imagine the exhaustion.

We also have a gentle boy who treads very lightly on the world. I don’t believe he’s ever broken a toy, and when he does get angry, his attempts to act out physically are so minimal that I actually have to turn my head so he doesn’t see me grin.

He is a good eater. He just doesn’t like combined foods, like casseroles, chili, soups, etc. He also eats just one food at a time on his plate, and heck, I know TD (Typically Developing) people who do that, and who also don’t want their food to touch on their plate!

We are lucky in very many ways, but I believe that one of the most important ways we have been lucky is our access to 5 years of full-time ABA therapy. He has been under the supervision of Carl Sundberg, BCBA-D, since October of 2006. He attends Carl’s therapy clinic, The Behavior Analysis Center for Autism (BACA) full-time. ( For those of you who have been along for this whole ride, you may recall a statement I made about miracles happening after weeks, months, and even years of dedicated, HARD work. Thomas’ progress with the BACA has been nothing short of one of these miracles. Seriously, families who know what ABA can do have moved here from across the country and in some cases from around the world for their child to be at the BACA!

Walk in this center, and you feel that you have walked into a special place. The love & dedication to their clients is palpable. Kids come out of their shells; they blossom because this place is designed to meet their every need. Each kid has a therapist assigned to them (two actually: one in the morning, one in the afternoon, and then during mid-day hours the kids rotate through lunch and group activities tailored for their particular needs) and a program is written specifically to address their deficits. Undesirable behaviors are not punished; instead, good behavior and following direction are enthusiastically reinforced which is WAY more fun and interesting than the alternative. The child learns that those “undesirable” behaviors don’t get them what they want, and they eventually fade away. Sometime I may have to blog about the Eagle Shriek of Thomas’…blessedly, those days are over, thanks to ABA. He can read thanks to ABA. He can tie his shoes thanks to ABA. He can add & subtract thanks to ABA. Just about every skill he has learned is thanks to ABA.

I could go on & on about the BACA & its staff: all the wonderful angels that have worked with Thomas through these past years. So for those of you from BACA who are reading this, THANK YOU. I literally am getting misty-eyed as I write this. Thank you, to all you miracle workers.  
Yes, that is Thomas, front & center in their conference table promotional material.

Friday, April 26, 2013

Autism Understanding & Acceptance 2013, Day 26 - Potty Training

Autism Understanding & Acceptance 2013, Day 26

Potty Training

I won’t go into explicit detail here, out of respect for Thomas, but I will provide enough detail for you to have some insight into how long this life skill can take to learn, if it is ever possible to learn.

Yes, I said “if it is ever possible”, because some kids with autism are never able to be potty trained. Most learn it eventually, some don’t.

Seven & a half years old: that’s how old he was when we could finally say he was fully potty trained – during the day. It was a LONG haul. And unlike many of the skills he has now (reading, adding & subtracting, tying his shoes, etc.), I taught him this. Granted it was with lots of help, but I – and Thomas – did this!

“Number one” was not so difficult a skill to learn. That being said, it was done by about age 6. However, BMs were another matter entirely. He absolutely did not want to poop in the toilet. I think perhaps it was scary. Again, I’m not going to go into great detail here – maybe I’ll leave that for this future book I’m being encouraged to write! Suffice it to say, while nowhere near as stressful as trying to brew my own goat milk yogurt (thank you to Wendy for commiserating with me today about that ridiculousness!), there was a point after about 2 years of sitting in the bathroom with him and encouraging him to go that I thought I was never, ever going to leave the bathroom. I was just going to stay in there for the rest of my life. Thankfully that was not the case, and by 7 ½ years of age, we no longer had to buy diapers for him during the day. Whew!

Nighttime was also a different matter, but by age 9 we no longer had to buy Huggies Goodnights anymore! We still have a few accidents, especially if he’s sick or really upset (or even occasionally if he is SO engrossed in his playtime downstairs that he forgets), but it is now the exception instead of the rule. Rock on, Thomas!

Thursday, April 25, 2013

Autism Understanding & Acceptance 2013, Day 25


This is another symptom or behavior that goes hand-in-hand with autism much of the time.

As you can see, he is HAPPY while stimming. Again, if you observe Thomas currently for more than a few moments, it is likely that you will see him flipping a plastic bracelet (like those LIVESTRONG bracelets…and hey, if you feel like giving yours away now, I know someone who would love to have it!)

I don’t know why he does it. People ask me why he stims, and I guess I don’t really need to know. It does something for him, and falls in the category of “If it doesn’t kill him or hurt him, well…okay then”. You’ve got to pick your battles. It keeps him happy while we are out shopping. It keeps him happy during church. On the other hand, we do have to make him stop in order to attend to a task, to listen to instructions, and to participate in an activity. He is capable of that.

I sometimes join him flipping bracelets. He’s really quite talented at it – I cannot possibly duplicate what he does. But when I try, he peers at me, fascinated, with those big brown eyes of his, and I know he knows I’m connecting with him on his terms.

As Rob & I have thought about this, we realize how much we ourselves “stim”. I twirl my hair and crack my knuckles. I like the way my hair feels and I don’t even realize I’m going it when I’m twirling it. And I’ve caught myself doing a little verbal stimming (scripting!) lately…can’t seem to stop saying under my breath “Ship my pants? I can ship my pants right here?” (If you haven’t seen the K-Mart commercial yet, go to YouTube and search “Ship my pants”.) Rob twirls his socks in the evening while watching TV. Everyone stims in some way: tapping a pencil, doodling. It does something for us. So flipping his plastic bracelets does something for him.

Some people work very hard to rid a person who is autistic of their stimming. My thought is: when they need to attend to something and the stimming is getting in the way, then yes, it would be good to be able to stop and attend. Otherwise, I have to believe that somehow it is organizing thoughts, or helping make sense of a situation, or calming, or a mental escape from a situation that is over-stimulating…something. And who am I to take that away from him? It’s part of who he is.

Instead of stopping him from stimming when we are out in public, I ignore the looks and concentrate on how happy he is, and tell him out loud how happy he and how good he’s being while mommy shops. At the very least, I am always smiling at him. And here’s the clincher: people’s reaction to him seems based on how I’m reacting to him. So if I’m okay with it, they are okay with it. And most importantly, he has moments during the day when he is not being fixed or messed with or redirected…he’s just being THOMAS, and that’s a pretty darn cool person to be.

Autism Understanding & Acceptance 2013, Day 24


This fascinates me, learning how his brain works.

A lesser-known language idiosyncrasy with autism is scrolling. Thomas engages in this, too. Scrolling is a verbal running-through of several phrases, one after the other. Scrolling differs from scripting in that scripting is one word/sound/phrase said over & over, while scrolling really is a list of phrases.

When he gets stressed, he will scroll through phrases that he has heard in the past that have stressed him out (i.e. no touch toilet, stop playing with the microwave, etc). This is how I know that he is getting on edge. It starts in his usual tone but if he isn’t able to de-escalate, his voice gets more urgent and the tears well up in his eyes, eventually he is yelling those phrases, and by then he just has to have a good screaming cry to get it out.

Side note: I will never forget the first time he cried into my chest. It happened in our kitchen here in Indianapolis, so he was at least 6 years old. Until then, when he cried he did not want to be consoled; it was too much sensory input. I couldn’t hold my boy when he cried. My heart exploded with joy when he finally accepted my hugs to console him, but broke at the same time due to his tears. My shirt front was soaked when he was done, and I had never been so happy to have my shirt all mussed up.

There was a time when I was actually quite concerned for myself due to one of his scripts. This particular script was “Be gentle”. Hoo boy, that was a tough one. As stated above, when stressed, he repeats words or phrases he’s heard previously that have stressed him out. We didn’t have several phrases back when he was about 4-5 years old, just this one phrase. Back then, he did have some undesirable behaviors – pinching the caregiver, especially. Ouch. My direction to him was telling him to be gentle. Well, this kid really wants to be good, and feels awful when corrected. So hearing “Be gentle” really stressed him out, and eventually he started saying “Be gentle” when getting over-stimulated. This was particularly awesome (insert sarcastic tone) when out in public. What would you think if you heard a kid saying to his mom “Be gentle! BE GENTLE!” in a grocery store or walking through the mall? I admit I was preparing myself to be arrested or reported to DCS. I am quite in earnest here, no joking around. I am glad to report that I have no arrest record and am not aware of any reports to DCS.

Autism Understanding & Acceptance 2013, Day 23

I’ll take a few posts here to discuss some of Thomas’ particular struggles. I’m sure that you’ve heard autism referred to as a “spectrum”, meaning that there is a wide range of impacted-ness (is that a word?) across the population of people diagnosed with autism.

When you meet Thomas, one of the first things you will notice is his use of language. Echolalia (a.k.a. Scripting) is big in our lives.

1. echolalia n. Psychiatry . The immediate and involuntary repetition of words or phrases just spoken by others, often a symptom of autism or some types.

He repeats words & phrases. A LOT. Our current scripts are “Be careful”, and “What do you want me to do?” Sometimes it isn’t even words, but instead is more of a musical intonation of a phrase with some approximations of words. This is where echolalia can actually be fun because he absolutely loves it when we figure it out what he’s trying to say. One of my favorites: “This is NPR news. I’m Robert Siegel. And I’m Melissa Block.” The echolalic phrase changes every few weeks or so. This helps mommy & daddy from completely losing their minds. Just kidding. Kind of.

The current “What do you want me to do” has really gotten some of the professionals he works with very excited. They’ll say “He asked me what I wanted him to do! It was SO appropriate!” And I have to smile at them and say yes, it may seem like it was, and it may have been! But it is also one of his scripts right now, so, you know…maybe not. Truth is, we just don’t know – it may be some combination.

Sometimes it is hard to know if it is purposeful speech or not. A few weeks ago, the script was “…in the sky…”. I took him to the Maundy Thursday service at church, and he quietly said “In the sky” over and over. I asked him if he thought Jesus was in the sky, and he said yes. A sweet moment.

But then, of course the Maundy Thursday service has to end silently, and of course Thomas is still saying “in the sky” over and over, and so I try the techniques of showing him his “quiet card” which prompts him to have a quiet mouth for about two minutes. It was a little longer than two minutes he had to be quiet, and trying to keep him quiet after that only frustrated him. It got a little noisy. After the service, a fellow autism mommy (who had her son with her) put her arm around me, laughed and said “God bless us autism mommies for bringing our boys to church and doing our best!” Having a supportive and understanding community around you is truly priceless.

Monday, April 22, 2013

Autism Understanding & Acceptance 2013, Day 22

Move to Indianapolis

We started feeling the pendulum of our lives swinging away from Bloomington. So much of what we needed, and the specialists with whom we were working, were in Indianapolis.

Bloomington was a lovely town. I loved living there. I still remember how excited I was when I first got to see that town – I was completely charmed by the sight of an actual courthouse square in the middle of town, and in the county seat, no less! They really exist! We had a fabulous church and a new minister we would have been pleased to have had as our minister for the rest of our lives. There was an easiness to life when driving all the way across town took 15 minutes, TOPS. It had a yet-to-be-beaten farmer’s market, fantastic playgrounds, and a community that I could easily have settled into for the long haul. But it was not meant to be.

Thomas’ needs trumped ours. We had found an ABA clinic in Indianapolis that supervised Thomas’ home program, and the 10 hours we were giving Thomas at home were so impactful that we wanted to get him into that center-based program. The doctor that was overseeing the diet & biomedical treatments for autism was up in Indianapolis as well. We even were driving up to Indy to buy natural foods at Trader Joe’s, because at that time, spending the money on gas to drive the nearly 90 minutes up there and back to buy those groceries was cheaper than buying them right there in Bloomington. Rob applied for a job in Indianapolis and got it. The pendulum had swung.

We researched and hand-picked the school district we thought offered the best special education services for kids with autism. I actually cried tears of joy when I saw his Kindergarten classroom: a swing, mini trampoline, cozy corner for reading, computers with assistive technology…perfect. We shed tears saying goodbye to some fantastic people in Bloomington, but moved to Indianapolis and have never regretted it. It was the right move at the right time.

Autism Understanding & Acceptance 2013 Day 21

Therapeutic horseback riding

A horse taught Thomas the meaning of “stop” and “go”. True story.

This is a picture from Thomas’ first day – he was 4 ½ years old when this picture was taken. He looks a little uncertain here but this quickly became one of his very favorite activities. The very real benefits of riding a horse: increasing core/trunk strength, leg muscle strength, and all the sensory input from being on a horse – especially when trotting, which became Thomas’ absolute favorite time of his entire week!

This first day was no cake walk, but what a reward was to come. We struggled with getting him to tolerate the helmet being on his head, along with the strap under his chin. Then came the startling but eventually cool but ride up the little elevator to get him up to horse level, because little guys like this can’t just hoist themselves up on a full size horse. We sat him on the horse and he was clearly VERY unsure of what the heck was going on. When he began to protest, we told the leader and side-walkers to just go and see what happened. The horse started to walk, and after a moment Thomas stopped fussing. He took it in with this facial expression for a while, which shortly turned to a big grin. He was sold, and so were we.

During his 30 minute sessions, he would ride with a leader guiding the horse and a side-walker on each side of the horse to assure he wouldn’t fall off. They’d lead the horse and Thomas around the ring and stop at little work areas to do little activities, such as putting rings on a pole, or tossing little bean bags in to a matching colored bucket. And then there was the trotting. How he would light up and belly laugh all the way around the ring! That was my favorite moment of my week too, I must admit.

The usual words in the ring for stop & go were “walk on” and “whoa”. Because Thomas was still very limited with speech, we used the words “stop” and “go” at first. And the leader would tell Thomas to say “stop” with her, and the horse would then stop. Then she’d prompt him to say “go” with her, and the horse moved. She was putting actual motion with the words; a physical understanding of what those words meant, i.e. This is what “stop” feels like; this is what “go” feels like.

He caught on pretty quickly, but my favorite moment – the moment I knew he knew what the words meant – was when she prompted him to say “stop”…and he grinned at her and said “GO!” Not only did my boy know what “stop” meant, he decided he did not want to, and used a word to express what HE wanted to do! There is no way to impress just how monumental that was.

Autism Understanding & Acceptance 2013 – Day 20

Special diets – trying to cure autism

Through all my research and my interactions with other autism mommies, I learned about the gluten-free casein-free (GFCF) diet, and how it really seemed to alleviate the symptoms of autism in many children. Of course this caught my attention.

The theory is this, in a nutshell: these children are unable to digest foods properly due to inflammation in the gut. Food particles seep through the gut to the bloodstream (“leaky gut”). The gut and the brain are connected (there actually is documentation of a brain-gut connection, not physical but relational), and if there is inflammation in the gut, there is inflammation in the brain. An inflamed brain can’t work to its highest potential. The physical manifestation of all this in the brain is “spacy-ness” and in the gut, well you get either diarrhea or constipation. This is a very brief and quite incomplete explanation, but I’ve at least laid the groundwork.

Thomas did not have the gut issues. But spacy-ness? We couldn’t rule that out and we didn’t want to leave any stone unturned, so we tried it. Over $700 out of pocket in lab work and at least that many vials of blood later, the results said that he was not allergic but was reactive to gluten (wheat protein), casein (milk protein), eggs, and a plethora of other foods. We started the GFCF diet.

Before I describe the next eleven months, I must say this: for those of you that know me, I am a Rule Follower. So if I do something like this, I DO it.

Casein was supposed to be out of the system within days; gluten could take months. Six weeks later we saw no improvement. In fact, the GFCF gave him diarrhea. So the next medical advice: go stricter. On to the Specific Carbohydrate Diet (SCD); no grains, rice, potatoes, sugars, most dairy…and because he reacted to eggs, those were out too. He could eat meat, fruit, vegetables and nuts. Bowel movements still were just wrong, and in the meantime, he was starting to look a little gaunt. No improvement in spacy-ness for him either.

The months dragged on as we tried more and more restrictions, even to the point that I was attempting to brew my own goat milk yogurt in the oven overnight. That was the closest I had ever been to a panic attack or nervous breakdown. No seeming benefits, no results…and then he got hold of a piece of wheat bread - ate the whole thing when my back was turned. I was about to panic – months of work down the drain! I had read that one bit of gluten can cause major regression and I was despondent. And yet…no change, no reaction – he was fine.

After a few more months (yes, MONTHS) of me stubbornly not wanting to give up on something I had worked so hard on for so long, we finally started re-introducing foods into his diet. And slowly, the color came back in his face and he filled out a bit. He looked like a healthy kid. So after eleven months, our journey with “the autism diet” came to a close. And he could have his Goldfish crackers again.

I will close this long post by saying that these diets have worked for many kids. It just didn’t for Thomas at this point.

Autism Understanding & Acceptance 2013, Day 19

And now, for the first time, I will talk a little religion here. And I might be a little irreverent, so be warned.

I don’t know if God chose us for this. I have a hard time believing that a master puppeteer decided all of this, or that God saw how awesome Rob & I would be raising a child with a disability and gave us Thomas. People have told us this numerous times. Maybe that’s how it works. I don’t know.

Honestly, in the early days when people said this to us – meaning nothing but to uplift us – I would smile politely and thank them, but my internal reaction was “God CHOSE us for this? Well thanks a lot God – you can kiss my ass!” Hey, I figure if the Psalmists can yell at God, it must be okay. So I have, plenty of times.

Here are some things I DO know: God is with us every step of the way. Worrying with us. Raging against the machine with us. Empowering us. Guiding us. Crying and rejoicing with us.

Another thing: our son is connected with God in a very deep and real manner, quite possibly much deeper than many of us NT’s (Neuro Typicals). In fact, I’m quite sure of that.

And finally, this I know: when something happens, God sends help. For us, it has been in the form of angels in disguise sent to help: friends who stuck by us when it was really hard & uncomfortable to do so, people who came into our life just at the right time to lead us to a new idea, or ultra-talented therapists who fell in love with Thomas and made a huge impact.

I believe that our lives have been enhanced by Thomas and all he is. And for that, I do thank God. I do not thank God for autism, but I thank God for Thomas and all the joy he brings us every day.

Autism Understanding & Acceptance 2013, Day 18

Now that I knew that ABA worked, I had to figure out how to get it for him. Currently in Indiana there are multiple full-time ABA clinics around the state, especially focused in the Indianapolis area. But in 2006, in Bloomington? Nope. I was going to have to find our own staff…and then there was that little matter of training them AND myself! Oh yeah – that.

I tend to pay attention when something falls out of the sky into my lap. Sometimes it is to test me (is this what you really want?), but most of the time it is to say “YO! Here!!! Do I have your ATTENTION yet?” And ABA fell into my lap. I first was enamored with the idea of Floortime, but it was not readily available. And then came Elena, and then Natalie.
She fell into our combined lap: mine, Rob’s & Thomas’. One day on a field trip with Thomas’ preschool, a college student came along as a substitute (undoubtedly as an extra pair of hands for the field trip). Ms. Barb took me aside, and quietly said to me “Hey, that Natalie girl does that ABA thing.” I believe I said “Oh!” before I turned tail and nearly ran across the playground to talk with her. I don’t think I actually left a trail of dust in my wake, but you never know – I wasn’t looking back.

She was already doing ABA with another family in town. She had time for us. She was available.

I have come to believe over these past years that miracles don’t just happen. They usually are preceded by lots of intention, hard work, research & dedication. My boy needed help. I did what I could to find it. And in walked Natalie.

We started with 3 hours a week. He made so much progress in those 3 hours that we upped it to 10 quickly. Our boy was learning how to learn.

Autism Awareness & Understanding 2013, Day 17

ABA.  It works. 
I do not remember how I was connected with Elena, but that doesn’t really matter. What matters is that I WAS connected with her.

I went to her home to see what they were doing and how they were supporting their son. He was homeschooled in a full-time ABA program, utlizing two therapists who worked with him during school hours. What I remember the most was the basement of this house: a big trampoline and a swing! What a wonderland for a kid on the spectrum – or any kid, for that matter.

I was not the first to come see her set-up at their home, and she and the therapists welcomed us warmly into this wonderful little world. Thomas showed interest in the trampoline, so one of the therapists hopped up on the trampoline with him. He was having so much fun he didn’t know she was putting him to work.


(Thomas grinning & laughing)

*Jump*Jump*Jump* Stop

Therapist: “Hey Thomas, say mmm”

Thomas: (grinning) “Mm.”

Therapist: “GREAT job!”


(Thomas grinning & laughing)

*Jump* Jump*Jump* Stop

Therapist: “Hey Thomas, say ‘mama.’”

Thomas: “Mama.”

And I was hooked. He said Mama. He was having fun. I saw it with my own eyes and heard it with my own ears: ABA worked for him.

Thank you, Elena. Thank you, therapist.

He said Mama.

Next up: ABA works. How do we get it?

Sunday, April 21, 2013

Autism Understanding & Acceptance 2013 Day 16

I chose this picture because it looks so much like he is having a conversation with Ms. Barb, his gift of a preschool teacher…

Before I leap into ABA, I thought it would be good to explain where Thomas was developmentally at this point. His speech was extremely limited. You could probably have referred to him as non-verbal (although I like the term “pre-verbal” myself).

His first word was “cookie”. I kid you not. Actually, it was more like two consonants: “Kh-Khee!”, all unvoiced – the vowels spoken like a whisper. It eventually lengthened to the actual word. Looking ahead to ABA days, talk about a reinforcer: I make those sounds and someone gives me a cookie! Then came “goldfish”, another beloved food item from this time. When first trying to say this word, it sounded like “go shit”. Again, no joke. I still tell the story to this day of Ms. Barb pulling me aside, and while amused, did tell me that she thought he was saying “go shit” in class (and it was not a request to go potty, either). (By the way, that developmental milestone had not been reached either. Diapers were a big part of our lives for 7 1/2 years.)

Note that I have not mentioned him saying “mama” or “dada”. He had not called us by name, could not say who we were when asked. I kept my chin up and said to myself and others, “Why would he need to ask for us? We are always there. Whereas cookies and Goldfish Crackers…not so much!” And it is true that food is a great inspiration for both sides of our family, so he gets it honestly. Of course this was masking the sting of not saying my name, but humor became a real balm during this time.

Holding a crayon, using scissors…all manner of fine motor skills significantly delayed. All required hand-over-hand prompting & guidance.

Also, imitation – or lack thereof – was a huge barrier. He just wasn’t imitating. Now, think about how toddlers & preschoolers learn. Imitation, right? They watch and they try, and eventually they do. If a child doesn’t know how to imitate, you can imagine the stifling effect that has on learning new skills. One of autism’s hallmarks is a deficit in understanding social rules & interactions. Talk about a deficit. He didn’t know how to learn.

Monday, April 15, 2013

Autism Understanding & Acceptance 2013, Day 15: Work to Do

Some relief did come in the days after getting the diagnosis. Yes, it changed our expectations of what life was going to look like, and that came with grief and shock. At the same time, knowing what we were facing was better than the unknown. I was freed from the stress of trying to make this go away if only (if only if I spent more time with him, if I were doing the right things, etc. etc. etc.). It was true. I couldn’t make him not be autistic. So I dove in. I had research to do, or in my minister’s words, “work to do”.

Side note: as if I COULD have spent more time with him! I was a stay at home mom, for crying out loud! I was doing nothing but meeting his needs! But the things we moms say to ourselves…wow…our own worst critic at times.

Ready for acronym fun? I spent many hours at the CeDIR (Center for Disability Information and Referral) housed at the IIDC (Indiana Institute on Disability and Community) right there in Bloomington; an entire library of books, videos & DVDs on disabilities. I stood (and sat, at times) in the aisles of autism stacks, paging through books and browsing videos, taking in whatever I could and taking home bags full of information. I returned month after month, taking in more & more. I centered in on a therapy called Floortime. It was a relationship-based therapy that made a lot of sense to me. And…the closest trained professionals were in Chicago. I’d have to go there with Thomas for months at a time. Or pay them to come to us. Roadblock.

Many other newer therapies I came across all seemed to be making the case why it was better than ABA (Applied Behavior Analysis). In fact, SO many were comparing themselves to ABA that it got me wondering what was behind this ABA therapy. It seemed like ABA was the therapy by which these other therapies were being measured. ABA also seemed to be the only one that had any hard data proving its efficacy. I learned that there was a kind-of sub-category of ABA called Verbal Behavior.

Hmm. Verbal Behavior. Our son really didn’t have any “verbal behavior”. What was behind this?

Somehow, I was introduced to another mom of a son with autism who had an entire home ABA program set up for him. He didn’t go to school – she was doing this all from her home. Little did I know what an important introduction she was to me, and what ABA & Verbal Behavior was going do for Thomas.

Sunday, April 14, 2013

Autism Understanding & Acceptance 2013, Day 14

Helpful Advice

Let me start by saying that any friends of ours that stayed by our side during this time, I thank you from the bottom of my heart. You have a permanent place in this very grateful heart of mine.

Two pieces of advice came on the very same day, in the very same location: our church. They were different from the other, but both have stuck with me to this day as advice that truly helped me.

First bit of advice came from our interim minister, with whom I had developed a trusting relationship due to my serving on the church board at the time. After the hearing about the official diagnosis, he said something close to this: Take about two weeks to grieve. Feel it. Don’t do anything for that time. But only two weeks - because after that, you’ve got work to do.

Some may feel that may have been kind of harsh, but it was exactly what I needed to hear, and here’s why: it acknowledged that grief needed to happen and it was okay to grieve. But he did not pity me. I didn’t know it at the time, but pity would have allowed me to wallow in the grief for too long. His advice let me know that I needed to pull myself together for Thomas’ sake before too long, a gentle nudge-in-the-butt. I needed to hear all of that.

Second bit of advice came from another mom in the church, who happened to be about 40 years older than I, and who raised a son with autism during the time of “refrigerator mothers”. (If you don’t know the term, Google it. Psychology has come a LONG way, baby.) She told me this: Look toward the light. There is always going to be darkness. But just look toward the light.

Her adult son now lives in his own home. He not only has a good job, he has a career. He walks to work with his helper dog every day. He’s doing it – living as independently as he can, contributing his skills & talents to society, has relationships – what so many of us want for our children.

I think it is fair to say that Rob & I have both taken her advice to heart. We look for the light, and despite the darkness around us, we have found that there is always plenty of light to see.

Autism Understanding & Acceptance 2013, Day 13

The Drive Home

I do not remember anything else about the diagnosis appointment beyond being given a thick packet of information about autism, being told that we could come back in a year "if we wanted to..." (For what? Do do what? We weren't told that), and wishing us well. The full autism diagnosis was not a surprise (as opposed to the more generic catch-all of PDD-NOS), but nevertheless it hit like a brick wall and we were stunned. Numbed might be a better word, actually.

I don't remember leaving, I don't remember getting in the car. What I do remember is at some point on the drive south on 37 back to Bloomington, we acknowledged that we had to call the family to let them know. They were anxiously awaiting word. And I remember feeling so awkward about how to tell them. I didn't want to make the calls. I knew our family would be nothing but supportive and loving. But I barely had the energy to summon the ability to even speak much. And once we told them, their lives would be changed too. It wasn't just our dreams that were going to have to be changed from that moment on, but theirs as well. And what do you say beyond "Well, he has autism"?  But it's okay? But we're great? Because it wasn't and we weren't.

I struggled not knowing how to balance these facts: Thomas had not changed one bit from the kid he was that morning. He sat in the back seat, just like he always did. Nothing had changed for him. He was that same wonderful child. But just about everything else had changed for us. The child I had wished for all my life and that Rob & I we had planned for, eagerly anticipated and joyfully anticipated raising was autistic. And we had not one clue what to do next. The future yawned before us completely unknown. It was a long drive home.

Autism Understanding & Acceptance 2013 - Day 12

Diagnosis Day: October 3, 2005 (no picture today - not writing from my computer)

Yes, I remember the exact date. We waited until Thomas was four years old to get the official diagnosis. We could have done it earlier, but decided against it for a few reasons. First of all, we wanted to get as accurate a diagnosis as possible, and not a best-guess ...answer, come back in 2 years sort of deal. We wanted to let him unfold as much as possible before diagnosing. Secondly, Thomas was already getting all the therapies & services he could get without the diagnosis, so there was no reason to rush there. And as far as his education went, he could still qualify for Developmental Preschool under the category of Developmental Delay; it wasn't until Kindergarten that he would have required a more specific diagnosis.

When he turned four, we got the referral from Dr. Schechter to Riley Child Development Center for a diagnosis. We liked that more general approach than going to the Autism Center at Riley simply because we didn't want them just to be looking for Autism (if all you've got is a hammer, then everything looks like a nail, you know?). What if it was something else? Or more than that?

We had to wait nearly 6 months for an appointment, and it was hard to wait. But the day came and we drove up to Indianapolis and stayed in a hotel near the hospital overnight so we could be there for the 8am appointment.

It was a full day of testing, interviews & observations. They observed Thomas, attempted to interact, watched how he played, and interviewed us. And at the end of the afternoon, they sat us at a table, and very carefully, gently but clearly said that the best way to describe what was going on with Thomas is autism. The psychologist gave us a minute to let it sink in. My memory is a little blurry, but I do remember another pause in the discussion, at which point I sobbed, strongly & hard, for an intense but not overly long amount of time. Then I remember stopping, looking up, and asking what was next.

Tomorrow: leaving Riley and the drive home.

Autism Understanding & Acceptance 2013 - Day 11

These posts seem to be getting later & later each day. Anyway, academic challenges! You've all stayed tuned, and I thank you.

Thomas has what I call "happy autism". He is a happy kid, and as I indicated in my previous post, is able to entertain himself all day & doesn't demand much. Once people spend a little time with him and get to know him, they really do adore him. Every teacher that has worked with him wants him in his/her classroom! And that is fantastic!

But (and there is always a but...) in the classrooms where Thomas is placed, there are other kids with autism and other diagnoses. And there are always other kids who require more attention due to behaviors, outbursts, etc. Those kids need attention, and they get it. I understand how and why it happens and certainly hold no ill will against the fellow students or teachers. Even the "typpies" (typical kids) who can converse & interact have the attention of the adults in the room. At the same time, Thomas rarely has "behaviors". He also requires hand-over-hand instruction to learn a new task, which means one-on-one attention. If he isn't getting this, and everyone's attention is understandably elsewhere, he goes off to a removed place and finds something to spin or flip, or just hangs out...not learning. No ill intent. A completely understandable situation.

So I'm going to lay it out here: he's happy & causes little disruption, he's easy to have in the classroom, everyone loves him and wants him. That's awesome! But he's also the kid that falls between the cracks because he doesn't have the behaviors that demand attention. And therefore, in group settings like this, he does not learn. Period.

The solution: one-on-one instruction. Next stop: ABA. Or diagnosis day. Stay tuned.See More

Autism Understanding & Acceptance 2013 - Day 10

Developmental Preschool (picture at Wonderlab with his preschool teacher and classmate)

When a child turns 3 years old, s/he ages out of First Steps and, if still eligible, enters the world of Special Education. Here comes Developmental Preschool! And what a fun first year this was. Thomas was in a class of approximately 12 children, a majority of whom qualified for special services due to developmental delays or other special needs, and the other children were typical kiddos (my favorite nickname I've heard for them is Typpies), a.k.a Peer Models.

He went Monday-Friday every morning for three years. The first two years he was at Templeton elementary school, a classroom we hand-picked for the love and fun that the room emitted. There was another classroom at another school which was visually much quieter, very organized & had a structured setting, but we waited for that classroom until his third year. Templeton's classroom looked like a place where a kid could have some serious FUN. And we think he did. He certainly met his first love, Kathy Duckett, his Speech & Langauge Pathologist (SLP) whom I have to call out here because he STILL mentions you, Duckett!

This is where the academic challenges that lay before him began to show themselves. He was, and still is, a happy kid who can entertain himself ALL DAY if necessary. He preferred to sit off by himself, spinning or flipping a toy, instead of sitting in circle time. Encouarging him to join the circle brought him to the circle for mere moments, unless he was sitting in someone's lap. Every activity had to be assisted hand-over-hand, and if not, he was off to his corner to flip or spin something, or play with a perferred toy. He just didn't demand much, and was a super-sweet and cute kid. (Yes, I just said my kid is cute. I'm not biased - I'm just speaking the truth here.) Everyone loved him, and loved having him in class. And we loved having him there.

Why are these academic challenges? Stay tuned...

Autism Understanding & Awareness 2013, Day 9 - First Steps continued

So the at-home therapy appointments continued until Thomas was three years old. This was a tough time. At first it was all fun & convenient: yes, our son had some delays, but ...these fantastic women were coming to our home and playing with him, teaching me things to do with him to reinforce what they were doing in-between visits, and while always professional, became quite friendly with me. But as the time went on, and after one of them did say autism to me - in passing, you know, as if I knew that's what was going on - then those visits became more like a 5-time-a-week Mommy Test. I was feeling more and more like a failure. I was failing him. He wasn't making progress. It was my fault.

So I buckled down even harder, trying to work with Thomas. There is a brief scene in the movie "Temple Grandin" - a flashback - where her mother (Eustacia Cutler) is sitting on the stairs with a young Temple, trying to get her to look at flash cards. Temple sits and just looks beyond the cards, unaware of the attempt to connect, completely in her own world. I burst into tears when I saw that scene because that WAS me and Thomas. I got the same reaction, day after day. And that is one of the most helpless and frustrating experiences I've ever had.

On top of that, add on lots and lots of "life" that happened during that timespan. I was buckling under immense pressure. And darn it, this girl does NOT like to admit to herself that she needs help, let alone ASK for it.

But you know what else First Steps provided? A Social Worker for mommy. And what a game-changer and Godsend she was. I had somehow caused this, I sobbed to her. And she said to me the words that allowed me to move forward, and they went something like this:

Suzanne, there are women in this world who get pregnant accidentally, who have no prenatal care, do everything wrong - smoke, drink, whatever - and some of them manage to have "normal" babies. What on EARTH makes you think YOU did this? You, of all people?

And through my tears, I heard her. I actually saw light. I believed her. And I still believe it to this day.

About 99% of the time, anyway.

She's a Facebook friend of mine to this day. Thank you, Friend.

Autism Understanding & Acceptance 2013 Day 8: First Steps

Sort of a play on words here with this picture...but as stated in an earlier post, First Steps is Indiana's early intervention program. These programs provide therapies for childre...n birth-3 years who show developmental delays. Every state has one, and can be accessed through your pedicatrician or even self-referral. Dr. Schechter referred us when Thomas was 15 months old because he was not saying "mama" or "dada" yet, had his Half-Ass crawl and was not yet walking.

I fully admit that I was just along for the ride at this point. I did not see that anything was truly amiss. I had my worries here & there, but what mom doesn't? There was enough info out there saying that boys talk later than girls - why worry? And even though the book which I flipped off on Saturday really made me nervous at times, I really went into this First Steps time just humoring the therapists. I even remember saying to them, "He'll get some help and be fine by 5 or 6, right?"

Sometimes I wonder about the definition of denial. Does it mean that you have an inkling that something is wrong but you don't want to see it, or does it mean that you truly just have NO idea what you are staring down?

He had five therapy sessions per week: 2 speech therapy, 2 physical therapy (which quickly moved to occupational therapy), and 1 developmental therapy. Wonderful therapists came to our home, took notes, and month after month, did not discharge him. This is when I started to hate those checklists: does he kick a ball? Does he play peek-a-boo?

Picture becomes clearer as I write this, but I just didn't see it at the time. Not yet. Everything is more clear when you see if from the outside, I suppose.

And when I first heard one of the therapists use the word autism, the only way to describe my reaction was blindsided - and for the first time, I knew what it felt like to have the world fall out from under you. And I flipped out. That's the only way to describe it.

Autism Understanding & Awareness 2103, Day 7 : Breastfeeding & eating

Yes, I did - or should I say, yes he did? :) Thomas nursed for 15 months! After a bumpy start for a few days, he caught on like a pro. My initial goal was 6 months mi...nimum, desired goal of 1 year. We started solids at 5 1/2 months because he wasn't sleeping through the night anymore. I'll add a few more pictures documenting all this. He's always been a good eater.

The one thing he does not like to this day is mixed foods, casseroles, soups, etc. Even spaghetti & meatballs - he eats the meatballs first then the pasta.

We'll get into diets another day!

But back to the breastfeeding for 15 months...I guess a theme I'd like to bring forward here is: we did everything we were supposed to do. I followed all the rules gladly and enthusiastically. If I was told by my docs to do something during pregnancy, I did it, and if I wasn't supposed to do something, I didn't. It was an uneventful pregnancy - no different from any other uneventful pregnancy.

I cannot help but think that regardless of the autism, the amount of time I nursed him probably has helped him immesurably. He is a healthy kid, and for that we are eternally grateful!

Now keep an eye out for other pictures...

My sister likes to make funny t-shirts

 First solids - 5 1/2 months
Obligatory first birthday cake-on-face picture.  First picture with Birthday Bear from Auntie Julie

Autism Understanding & Acceptance 2013, Day 6

Do I hear an "Amen" from my fellow special needs mamas?

I was going to post this tomorrow, but decided against this level of irreverence for a Sunday. Although I think God would understand anyway.

Friday, April 05, 2013

Autism Understanding & Acceptance 2013, Day 5

Autism Understanding & Acceptance Day 5: Crawling, kind of!

Thomas had his own very special way of crawling. Once again, it wasn't a concern really - we just thought he was so very clever for coming up with the "Ride 'Em, Cowboy" crawl, a.k.a. Half-Ass Crawl. He would lean over on one butt cheek, steady himself on one arm, put his legs in front of him and then propel himself forward by pushing forward on his heels and scooting on his one butt cheek, with the other arm up in the air (hence the Ride 'Em Cowboy). And we made lots of our friends laugh by calling it the Half-Ass Crawl. It really was quite ingenious and endearing.

Thursday, April 04, 2013

Autism Understanding & Acceptance 2013, Day 4

An ode to Dr. Schechter:

He was our pediatrician in Bloomington who referred us to First Steps, Indiana's early intervention program. We started going to him when Thomas was just over a year old, after we moved from Virginia to Indiana. I...n Virginia, we had been in a large, multi-physician practice, and it was their routine during the first year of a child's life to schedule each well-child visit with a different doctor - so everyone knew each other.

Note: Hindsight being 20/20, I believe this was an extremely ill-advised practice. No opportunity for continuity, or to see lack of progress.

In comparison, Dr. Schechter had his very own small practice, and was never, ever in a rush while in the exam room. He always ran behind because he spent the time he needed with each patient, and then personally TYPED notes from that visit. Then, at your next visit, before he came in the exam room he read over those cards and followed up on questions or stories you had shared. He did "Medical Home" before anyone knew what a Medical Home was.

He was a perfect combination of Mr. Rogers and Ichabod Crane: tall & lean, and one of the kindest & gentlest human beings I've met.

He referred us to First Steps when Thomas was 15 months old because he wasn't babbling yet, he had this funny crawl (which I will post about tomorrow), and had yet to take any steps on his own. Then in the following months & years, paid close attention, listened, and offered medical recommendations & and advice in a way that never made me feel like I wasn't doing enough. With his manner, he managed to put me at ease. Looking back, during those appointments, it was one of the few times I didn't feel like a failure during those early years.

I assumed he was close to retirement back in 2007, so I do wonder if he's still practicing. If not, there is a great hole in the heart of pediatrics that won't be filled.See More

Autism Understanding & Acceptance, 2013 Day 3

Autism Understanding & Acceptance Day 3

So we missed some red flags, but what DID we notice?

Really, it wasn't until he was about 12 months old that I started getting VERY uncomfortable when talking with friends & neighbors who had babies a...bout Thomas' age. They'd talk about how their baby was starting to use a utensil, and how pleased the baby was when she'd get the spoon to her mouth. Um, yeah, he wasn't doing that. And I didn't get why he wouldn't imitate "peek-a-boo" like every other baby I had met. And no "Mama" or "Dada".

And I will note this as truth for our child: NO regression.

And on a positive note...the TUNES this kid would hum! That really started at about 18 months. This amazing child started humming Mozart tunes off the Baby Einstein video around then.See More

Autism Understanding & Acceptance 2013, Day 2

Autism Understanding & Acceptance Day 2

What were our first signs?

Many early red flags would have been noticed earlier if Thomas had been a second child. However, when asked if we would have wanted to know earlier, our answer is no. We nearly 15 months with few if any worries. No "A-word" hovering over us - There was plenty of time for that!

1. Did not imitate (peek-a-boo, patty-cake, etc)

2. Babbled but was not saying words by 12 months

3. Did not share items that were interesting to him (this still stuns me when wobblers/toddlers do this!)

4. Played with toys but not in the intended way - made them spin, flip, etc. His favorite thing to do with his trike was to flip it over and spin the wheels. How clever!, we thought! And it was clever, but little did we know...See More

Autism Understanding & Awareness 2013, Day 1

Thomas walked at 17 months - just one month shy of being considered "late" at 18 months. Whew. Here he is, looking a little stunned at 1. the snow and 2. walking!

Autism Understanding & Awareness 2013, Intro

So if you are on Facebook at all, you are probably aware that April is Autism "Awareness" Month. And if you are my Facebook friend, then you know what a big role autism plays in our lives - and you are probably beyond needing to be "aware".

My goal for this month is to post a picture or some information or a brief story to promote understanding...perhaps even acceptance. Hope you're along for the ride.