Our journey in the Autism Spectrum

Posts tagged ‘inspiration’

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!

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Plain and Simple

April is over. Autism Awareness month has passed for another year. This past month has been filled with blue lights and t-shirts, blog posts and discussions. I have been overwhelmed by the support of our family and friends. This means more to me that I can ever express! Knowing those of you who were willing to turn on a blue light or wear a puzzle piece t-shirt, or forward a blog or share my Chameleon Facebook page to spread awareness to those who may not know or understand about Autism Spectrum Disorders means the world. And the tireless efforts of the parent-bloggers out there are incredible! (I refer to the list of some of my favorites listed down the right-hand side of my blog page).

But despite the added awareness, our daily lives have gone on pretty much same as usual.  We have our  ups and downs and our tribe is very well aware every day the impact that autism has on the entire family. And there are many days where part of me wishes we didn’t have to be so damn aware.

It’s tiresome. Exhausting. Many times I just want to be done with it. I don’t want to talk about it, read about it, or blog about it. And then I check my e-mail, my Facebook. I see that friends and family have commented on my page or on this blog, showing support, letting me know they are there for us! Everyday I get new blog post notifications and status updates from some of the most wonderful, inspiring and just plain amazing people…most of them moms, who write with such beauty and HEART, about their children, their lives with Autism. Their stories may not always be pretty or fun or upbeat but they are always beautiful. And all of this helps me to keep going for my son. To keep writing. To keep advocating. To keep learning. Perhaps that is why we haven’t been able to bring ourselves to change out our blue porch light. We must keep going.

I’ve been trying to search for just the right words to express just how huge my feelings of appreciation are for everyone. Two little words, “thank you”, just don’t seem enough. So, I ask each of you, and those of you with children on the Autism Spectrum will most certainly understand this, imagine someone you love so dearly that cannot express themselves or has trouble with even the most basic of tasks. The frustration of it all. And now, imagine that they completed a task or used their words for the first time…how something so plain and simple can feel so HUGE.

With that in mind, I say “thank you”.

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