A Glimpse at Life on the Other Side the Wall

Last night I had the opportunity to attend the Autism Awareness and Understanding presentation by Aaron Likens with TouchPoint Autism Services.   What an amazing program!  Aaron and TouchPoint have meant so much to our family. I thought I might share a bit of our story as to how they have made such a difference in our lives.

Before we had a diagnosis, I had always known there was something different about my son, Henry. Something different but perhaps something special too.  I just couldn’t quite put my finger on what it was.  He was funny and smiled a lot. He could be a loving little dude, and certainly he still is. There has always been a certain “mischievous charm” about him; a special sparkle in his eyes.   But he could be stubborn and very fussy as a toddler. He never required much sleep at all! He had very few words by 3 years old. Meltdowns became much more frequent. Daily. Well, many days it was several times a day if I’m honest about it.  He was no longer easy to engage and I felt myself really having to work at connecting with him.  A wall had been put up. We began to become isolated because of our lack of sleep and Henry’s behaviors.

At about 3 1/2 years old, despite an explosion of language skills (relatively speaking), something still wasn’t right. I was at my wit’s end. Our family could not continue to live in the chaos that our home had become. When Henry was 4 years old, our pediatrician gave us the official diagnosis of PDD-NOS and ADHD. (I now feel that the ADHD is just a symptom of the Autism Spectrum for us but at this point it really doesn’t matter). The diagnosis wasn’t a surprise by that time. Pervasive Developmental Delay (or Autism Spectrum Disorder) made sense. It was a relief to have a name for our son’s differences. That relief was promptly followed by a hard kick in the gut by reality. Now what?!?

During that first year after the diagnoses there were so many therapy appointments, doctors’ visits, more evaluations and IEP’s. I was going to just about every seminar, conference, or workshop on autism spectrum disorders and childhood behaviors that I could, trying to glean some information that might actually help us at home. Despite all of my knowledge-gathering, I still felt isolated. We knew no one else who had a child on the autism spectrum. I was exhausted and overwhelmed. I just never seemed to have the time or energy to make that one more phone call to TouchPoint. That first year, every time I would speak to our pediatrician he would ask, “Have you called TouchPoint yet?”

As we approached the one year mark, I knew I could not bear to tell our pediatrician that, “No, I still haven’t called TouchPoint.” So finally, I made the call. In that very first phone call to them I realized that TouchPoint should have been my first call. (I’ve also become a better listener to our pediatrician!) I was amazed to learn about all of the programs and supports they had in place, not only for those with autism but for the family as well!

It was about this time that I decided to start a blog. Perhaps I could work on my writing and it might give me a diversion from constantly researching articles on autism therapies and treatments.  I thought the blog would really be just for me. A place where I could process things; put my feelings “out there”, and maybe even improve my writing skills.  I still felt so alone in all of this. With this new “hobby” I found a few autism blogs that I really enjoyed reading; one of them being Aaron’s Life on the Other Side of the Wall. I was thinking, “Wow, here’s a guy with Asperger’s blogging, being a productive citizen, sharing his experience of the autism spectrum, living life! He wrote a book! And he’s here in St. Louis? With TouchPoint? Wow!” ~my first glimmer of hope for my son to have a future, real potential for him to live a fulfilling and productive a life!

In 2010 I was  excited to learn that Aaron would be speaking at the  US Autism & Asperger Association (USAAA) National Conference here in St. Louis that year! I stopped by the TouchPoint booth at the conference and I was amazed at how welcoming they were. Aaron actually spent quite a bit of time talking with me about TouchPoint, his book Finding Kansas, and a bit about what it was like for him living with Asperger’s syndrome. Later, I was further impressed as I listened to Aaron participate in a panel of autism experts. He was seated right next to Dr. Temple Grandin for crying out loud! And Dr. Stephen Shore was at the other end of the table! They were all sharing their personal experiences of what it was like living with autism. Amazing!

It was in these moments that I realized my son is actually very high functioning and since then we have always described his autism as more at the “Aspergery-end” of the spectrum. I was gaining more hope.

My husband and I decided to make a commitment to further help our son and our whole family by attending TouchPoint’s ADAPT program.  This program is an on-site, 2-week intensive parent training session that we attended with our son. A true life-changer! When we got settled in for the program, I was surprised how immediately I felt at home here. I felt as if we had a place. We belonged here!

It was the ADAPT program that truly opened my eyes that I could see and experience just how smart Henry really is! This was the first (and only) program that not only allowed us to get a look into Henry’s thought processes but it gave us the knowledge and practical skills for us to use at home! We were connecting in so many positive ways! It was a bonus that Aaron came to speak to us as part of the program. The insights that he so generously shares into what it is like for him living with Asperger’s syndrome are incredible! Aaron truly conveys hope for those living with autism and their families. His passion for spreading Autism Awareness is inspiring!

We are now currently over two full years out from our diagnosis date and a year and a half from the completion of the ADAPT program.  Our son, Henry, has come so very far! He is in mainstream Kindergarten and doing so well beyond what I could have imagined! He’s still a quirky kid and most likely always will be. But he knows of his autism and is learning about it and he is learning to advocate for himself already. I also now have the privilege and honor of coming back to talk to the new families going through the ADAPT program, giving them a parent’s perspective. I love being able to come back “home”!

I am so very proud of my son! We have a long road ahead of us but I know we are on the right path.

I also know that because of Aaron and now with his Autism Awareness and Understanding Tour, he is paving the road ahead of us, helping to make our way so much smoother, inspiring us and giving us hope! Aaron gives us many gifts through his writing and presentations to peer over that “wall of autism” to SEE and connect! From the bottom my heart, I thank you, Aaron and TouchPoint Autism Services!

Expanding Our Kansas: The Fish Fry Experiment

[Ed. Note: “Kansas” is a concept by Aaron Likens , a man living with Asperger’s Syndrome, that he explains as “when I was in an element that I loved I was much more functional and everything made more sense. From this I defined Kansas as ‘The activities, concepts, or interests that a person on the spectrum is supremely interested in.’ Most people on the spectrum have an area of defined interest and I define that as Kansas.”  He also used this as the title for his book Finding Kansas: Living and Decoding Asperger’s Syndrome.  Having had  wonderful opportunities to talk to Aaron on a couple of occasions and having heard him speak several times, our family has adopted this concept to also include any time or place or experience that our son, and our family, is most comfortable. Our “Kansas” is our comfort-zone.  And  we do know we eventually have to push beyond those borders in order to grow.]

It’s fish fry season. On any given Friday during Lent, at just about every Catholic Church in the metro area, you can find a fish fry. And take my word for it when I say the number of parishes in St. Louis and surrounding areas is staggering!

We don’t eat out with the kids. Ever. Unless you count McDonald’s as eating out, which I do not. This is just not a situation that we have been wanting work through right now. But we know we really need too. So, why not try a fish fry? It’s families.  It’s casual. Right?

We talk about where we’re going and a little bit about what to expect. I try explaining to Henry that it will be a little like eating in his school cafeteria. We have assured the kids that this fish fry also serves some pretty darn good cheese pizza and there just might be some yummy desserts to choose from if everyone eats their meal.

We arrive early at our destination to avoid the big dinner rush and head inside. Grant and I are leading the way with all three kids behind us. We scope out the lay of the land and see that Grandma has saved us spots at the end of a long table in case we need to make a quick exit, yet right near the big dessert table to perhaps provide some motivation if needed.  Perfect! As we head further in I notice that Lucy is right next to me but I don’t see Henry or Molly anywhere.

Slightly panicked I start scanning all around and finally head back through the doorway where we first came in to find Molly squatting down talking to Henry. He doesn’t want to go through the doorway to this new place. He put the brakes on immediately at the doorway and would not go a step farther. Molly is handling it beautifully and she gestures for me to step back while she talks with him. After a few minutes, Molly waves me back to where they are  and passes the baton to me where I immediately hand it off to Grant. After a few more minutes pass even Dad is unsuccessful in getting him to move father inside.

Grant and I exchange looks with our eyebrows raised, silently asking each other the question, “Should we cut bait?”

“Let me try.” I say.

So now Henry is really wanting to head outside but I encourage him to just look inside the cafeteria. I assure him that I will not make him go inside if he doesn’t want too.  Grandma comes over to see if she can entice him with  the promise of desserts  but he’s not ready to hear any part of that. He stands leaning on one foot, then the other, rocking slightly back and forth.  He is talking to himself quietly under his breath and occasionally lets out a yell to express his anxiety about this new place. We continue to talk quietly about what will happen inside and then suddenly he says, “OK!”

Just like that we get in line, order our food, get drinks and sit with Grandma to eat. Henry just had to process the whole situation. I was exhausted!

After finishing his entire pizza, Grandma offers to take him over to the dessert table. He takes his time looking over the many choices and when finally he makes his decision, Grandma hands him the money to pay.  Henry quickly devours his cake and asks if he can have another. After all his hard work to not only get himself in the door but then also sit well at our table and eat, I was not about to deny him. I get up to walk over with him.

“No, Mom. I can do it by myself.”

“Well, I’ll just walk with you.”

“No, Mom! I can do it myself! I want to do it myself!”

The experience of choosing something and then paying properly for it is another area that we have not really worked on.  With Grant sitting next to me telling me to let him go already, I hand Henry the exact change he needs and then held my breath never taking my eyes off him. I’ll admit here that the dessert table was maybe 10 feet from our table. It might as well have been 10 miles as far as I was concerned.

We watched him walk along the long table again browsing the possibilities.  Some boys were playing a video game nearby and we giggled as Henry got a bit distracted and went over to see which game they were playing. With only one simple verbal prompt from me, Henry was back checking out the desserts. I watched him make his selection and hand his money to the lady working the table.

Henry walked back to his seat so proudly!

“See? Did you see me do it all by myself?”

It was at this point I think I started breathing again. And tried to keep my tears of joy in check!

It was nearing time to go but Molly told us that she promised to take the kids to the playground after dinner so off they went.  Grant and I were enjoying our beer and some kid-free, adult conversation. We weren’t really paying attention to the time. We had been pushing it to begin with so we should have known better.

Sure enough, about 15-20 minutes later, here comes Molly practically carrying Henry back in to the cafeteria in complete meltdown with Lucy dutifully following. We had been there too long. I felt awful that one of us had not gone with them so Molly would not have to deal with that on her own. Again, she handled the situation very well. As best anyone could under the circumstances.

We scooped up our tribe and made a fast, albeit LOUD and embarrassing, exit.

Although the experience didn’t actually end well, I felt we took some big steps! We pushed the boundaries of our Kansas and had some huge successes! Experiencing public meltdowns (or the anticipation of the potential for one!) is definitely outside the borders of my own comfort-zone. I am learning that it is so important for ALL of our family to continue to expand our individual “Kansases”.  Although next time maybe we had better pick a different parish. Perhaps one in the actual state of Kansas.