Our journey in the Autism Spectrum

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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Comments on: "A Glimpse at Life on the Other Side the Wall" (5)

  1. Great blog

  2. Hello! I’m really glad I found this entry.

    The folks at Touchpoint have not been very responsive about my wish to speak to other families who’ve participated in ADAPT. Kind of frustrating, to be honest, especially since we’ve been working with them for ABA for over a year. So I’m searching anywhere I can for families who’ve been through ADAPT before we commit to doing it.

    It sounds like our son’s might be a bit similar. He is 4.5. His diagnosis is autism, but he is verbal and bright. So I am interested to know whether this program makes sense for parents of higher-functioning kids, or whether it’s tailored more toward those with greater impairments.

    We are overwhelmed lately by rigidity and constant meltdowns. One tiny thing goes wrong and the whole day can be thrown off. We are increasingly unable to leave the house with him to run errands, go to restaurants, visit friends, attend birthday parties, etc. It’s too stressful. And I have poor instincts when it comes to these meltdowns, I just never know the right thing to do or say. Do you think the program would help with that?

    One concern I have is about the portions of ADAPT where the parents and kids separate for a bit. He won’t handle this well. He doesn’t even like going to his preschool (which is awesome) and he cries and pleads every single morning. So, were the staff good about dealing with the crying kiddos who didn’t want their parents to go? Did your son have difficulty with that?

    I will be able to attend the entire time, but my husband will not. Which portions would you say are critical for his involvement?

    Any further insight you can give me would be much appreciated. Thank you!

  3. Hi, Megan! Thanks for finding me! You have a lot of great questions about the ADAPT program! First, just know that I can only speak from my personal experience and a little bit about what I’ve discussed with others that have gone through the program. For our family, it was a complete life-changer. Our son was 5 years old when we went through (he’s 7now). He was verbal, high-functioning, and bright. Our main issues were compliance, dealing with meltdowns, throwing, hitting, biting. I say that Henry was verbal because he did have speech but he didn’t really want to use it. He seemed sad or angry much of the time. So, that’s where we started. Within the two weeks, we were already communicating better and meltdowns were of shorter duration. We learned so much about how to deal with situations with him. And really, most of how situations went, it was something that WE could help control. We learned HOW to connect with our son. We understood him better so we could anticipate better what situations were hard for him, which ones could potentially send him into a meltdown, etc.

    As far as separating from the kids during the program, that was not really much of an issue for us personally. But there are many families that go through the program where this is very difficult. TouchPoint knows and understands this. They are really amazing about it! Those first few days can still be difficult and I’ve seen moms get very emotional about having to separate from their little one when that little one is melting down. TouchPoint can use those moments as a learning experience and give you and your child tools to help those times get so much better!

    I also cannot say enough about having both parents participating in this program together. I do know though that most of the time this is just not possible! Before you start the program, perhaps discuss with your partner the main issues you want to work on and then talk with your trainer and she will help you try and map out the optimal days or times when your husband can be there also. The trainers are willing to work out as best they can what works for YOU. That’s one of the wonderful things about this program that my husband really was impressed with. Each child on the spectrum is so very different (as are the families!) and this program will be tailored to fit your individual needs. We had 4 other families going through the program with us. One child was very severe with a lot of other health problems, another was almost completely non-verbal, there was a high-functioning 11 year old, and then us and another family with high-functioning preschool kiddos. We all had a lot in common but our issues were so different. We were all able to learn what our own kids needed and the tools to help us. What worked for us would not have worked for the others (and vice-versa).

    I am always happy to talk to parents who are interested in going through the program! Stacy at TouchPoint has my number and I’ve told her she can give it to you. Please call me with any questions or concerns. It’s hard to express everything we went through via internet. I do not work for TouchPoint nor do I have any vested interest in the ADAPT program. I simply volunteer my time and share my experience because I believe in it! Best wishes! I do hope you will stay in touch via this blog or my e-mail! If there is anything I can help you with I will surely do my best!

    Peace,
    Karen

    • Karen, I really can’t remember if I responded to you, so I thought I’d say a quick hello and thank you. Your response was so helpful and gave me the nudge I needed to move forward.

      We were originally going to do December but life got incredibly hectic. My 2 year old was also diagnosed with autism in November, and about the same time he got third degree burns on his hand that had us in and out of Children’s for a month. He’s ok now, and he’s going to attend with us.

      So I will be there with both of my sons (and my husband, as much as he can manage) starting on Monday the 7th. I’m not sure if you’ll be visiting, but I thought of you and wanted to say thank you so much.

      Megan Barnett

      • Megan! I WILL be visiting your session on Tuesday. I cannot wait to meet you! I am so glad you are giving ABA a chance. Again I tell you, this program changed our lives. Also, I read your blog and I adore it! ❤

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