Definitions

Six years ago, these are the words I used to describe my son:

"This is who Hayden is. He is Autistic. He screams about everything. I've lost hearing. Everything makes him upset and nervous and afraid, and he can only say a few words so he can't tell you when he's scared or tired, or why. It defines him. At least for now. Maybe I wish it didn't. But it does."

For the most part, those words are no longer true. 

Take a moment to let that sink in.  Most of those words are no longer true. 

When a child is diagnosed with autism, most parents are told there is nothing they can do. Nothing. Accept your child as he is. Prepare to put your child in an institution. Some are told to do this sooner than later. Many children with Autism live in residential facilities, away from their parents.

And yet by the grace of God, I stumbled upon groups of parents who were saying otherwise. They were saying that there were medical reasons behind much of the behavior of people with autism, and some treatments were causing remarkable improvements. Some people were "Recovering" from Autism: these individuals had improved so much with the help of doctors and therapies, that when re-diagnosed, they no longer qualified for an Autism diagnosis. Autism no longer defined who they were.

I chose to follow that path. The path of Hope. I set a goal for Recovery.

In the seven years since starting therapies, Hayden has gained his words. He has become more confident and less afraid. He no longer needs noise-blocking headphones everywhere we go and no longer needs help with every simple task. He helps others with some of these same tasks that he once found so difficult. 

Hayden balancing, interacting with a novel peer, and accepting defeat graciously and without incident.

Six years ago I also said,

"I heard that Autism was curable, but I didn't really believe it. Being able to get through a store without meltdowns is like a dream you hope for but know will never really come true."

If I took 4 year old Hayden anywhere, by the end he was overwhelmed by the sounds and lights and people, and would be screaming in the checkout and trying to run away from me. Pretty much every time. 

Within a year of Biomed and ABA, screaming in the store was rare. 

Today he handles a store like any other child would. He asks politely if he can visit the toy aisle. He accepts a No answer without complaint. He asks if we're done yet. 🙂 He helps bring the groceries into the house if we ask. 

Hayden still has Autism. He has new challenges now, and some days are worse than others. Last week was a rough one for our family for various reasons. Sometimes the continuous strain can wear me down.

But my friends lifted me up and helped me refocus. I do have to pause and reflect on how far he's come. Much further than many ever thought he would. So I looked back at past posts and found this one from September of 2011. It was wonderful to be reminded of where we used to be, and that we're no longer there.

I continue hope that one day we will be able to tell the world that Autism is a part of his past. As a family we will continue to push forward with new ideas while keeping in place our tried and true interventions. We have our annual appointment with our MAPS doctor in Chicago coming up in a week, and we're excited to see what our next steps are.

But I would no longer say that Autism defines him. When he was a screaming, crying, non-verbal mess... I did believe that. Autism defined him.

He was unable to speak or tell us about his feelings or preferences: What he wanted to eat. Where he wanted to go. Who he loved. Imagine being unable to explain to others that you hate wearing socks, eating green beans, or being in loud places, for example. He was stuck in that abyss with limited ability to show us who he was and who he could be. It limited his capabilities in the moment and his hopes for the future. It barred him from the quality of life I felt he deserved. It ruled his days with lining things up and spinning instead of enjoying the company of others, and screaming through a movie instead of enjoying it. It controlled every aspect of his life, and sometimes ours as well.

Today Autism is just one piece of the person he is. He is so much more: artist, comedian, friend, gamer, designer, avid reader. An independent future is still within reach for him.

Autism no longer defines my son. 

Through the hard work of many, including Hayden himself, he has overcome many of the difficult attributes of Autism. He inspires me daily and it is my honor and privilege to share his story with you, with his permission, that you may gain Hope from it, and in doing so lead your own child to grow in turn.

Autism is treatable. 

Follow the path of hope. 

Begin here. 

FUA.

I have to make this footnote, because this blog is read by people with high functioning autism, who may take offense to this post. Maybe some will disagree with this sentiment, but it's just my opinion. Others can have differing opinions of themselves or their children, and that's ok. Maybe you don't feel that Autism defines you or your child. Maybe you or your child are able to communicate your wants and desires. This is not the type of Autism he had. He was lost without the assistance of others. I'm not trying to define for you or your child who you are or what you or they can do. But I am explaining what defined my son and his opportunities for the future. Thanks, as always, for reading.\