Our journey in the Autism Spectrum

Posts tagged ‘TouchPoint Autism Services’

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!

I see. I know.

I saw myself today in another mother’s eyes. For a moment I could not breathe. The pain and hurt welled up in my chest and throat.   I saw tears in her eyes as she watched her daughter play; the love and joy and pride so fierce! Yet also seeing the agony of knowing just how painful it is for her precious little girl to be so close to other children, taking turns in a game no less! And at the same time exhilaration that her daughter was DOING IT!  I was overwhelmed! We watched our kids play together, my son, her daughter, along with another beautiful girl. They PLAYED! I wanted to yell out my excitement!  YES! I contained myself somehow. We were watching them behind a two-way mirror. We could see them in a play room with two ABA trainers “playing” with them but they could not see us, watching them, cheering them on silently in our hearts. We were encouraging of each other as parents. Some kind of bond, a knowing, an understanding on a completely different level was there.

I wonder what other parents would make of this scene. Parents with typical kids. Would it even look like playing to those parents. Each child needed different reminders or prompts for what was expected next in this time of “forced” socialization. The little girl sitting next to my son could barely look at anything but the floor but when prompted she looked at my son and said, “Your turn.” and my son looked back at her, if only for a second. But they LOOKED at each other! Another silent cheer from us!

I wanted to tell this other mother, “I see! I know! It is okay! It will be okay!” How can I begin to tell her that I feel the pain, the fear, the pride and the love all at once, too? For the last year I have felt so alone. I know no one personally who has a child on the autism spectrum let alone someone who lives very near us with a child the same age! I saw in her eyes what runs through my heart every day! Can others see this in my eyes too? If so, no one has admitted it to me. Is it only us parents with children on the spectrum that can see it?

For the first time  I felt  less alone when I saw myself in that other mother’s eyes. Does she see it in me too? Because I know, she knows! The raw emotion bubbles so near the surface. I could use a friend that gets it! I hope she does see because then maybe she can understand just how good she made me feel not to feel so alone.

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