I’ve been coming to the park with Hayden since he was small. When he was three and still non-verbal, he would enjoy running around on the playground for hours. I would play, too, for a while, then sit nearby and try to read every book I could find on the subject of autism. I’d have to look up after every page, because he tended to walk off after strangers he thought he knew.
Little kids would come up to me and ask why he did the things he did. I would explain that he had autism, and tell them he just needed help learning how to be their friend. They would run off to play with their new friend who did things differently.
He was three years old and he couldn’t tell me what food he wanted to eat, or if he was feeling happy or sad. I had to put pictures of his favorite foods on the fridge, for him to point to, and practice making angry faces so he could learn what emotions looked like.
When he first began to talk, he would say, “the tummy hurts” over and over. He was constantly in pain and it took a lot of work to figure out how to fix it.
I made him picture books of relatives that we would practice before they came over, so he would remember what they looked like. He once saw another woman at therapy and asked if it was his mom. His brain couldn’t remember what I looked like that day. This made me really sad.
One day he was able to say “I love you” to me on his own. That day was amazing. The day he learned to ride a bike on his own, and the day he first jumped off the high dive, were equally wonderful. The little things mean more because they’ve taken so much more effort to achieve.
When Hayden asks why he struggles sometimes with tasks that others find easy, and I explain that it’s part of his autism, he tells me that he hates his autism. When his sister is scared of his yelling, remembering his past aggression, she tells me she hates his autism.
I do not choose their words for them, and I do not tell them how to feel. They know that autism has changed their lives. I acknowledge their pain and grief, and still try to help them find the positives in the lives we have.
I always tell them that we want to help treat the aspects of Hayden’s autism that make his life more difficult, and keep the parts that make him amazing. There are truly both things in Autism. It doesn’t have to be black and white, good or bad, one or the other. There can be grey, and good and bad, terrible and wonderful. Just like in life.
Hayden is now almost 13 and a completely different child. He no longer has constant pain. He is verbal and more aware of others. He has not had aggression in a very long time. He’s fairly independent and doing well in school. He has a few good friends and enjoys reading graphic novels and playing video games. He still loves Mario and wants to be a computer programmer when he grows up.
He will take the trash out with minimal complaints. He helps bring in the groceries and puts them away. He likes salad and will begrudgingly play with his sister, sometimes without being asked.
The other day at the library I took this picture of him playing a casual game of checkers with another boy he’d never met. Just two kids at the library, playing a game. No adults prompting how to play or what to say. No one running off screaming when he didn’t win.
Tonight at the park my kids were playing together, and chasing a two-year-old on the playground. The child’s dad was walking laps around the small area. As he passed me he said, “You have nice kids.” He didn’t ask about repetitive motions or sounds, because there weren’t any. He didn’t have to remind Hayden to stay in the area or play appropriately. He simply appreciated that my kids were accommodating his little one in a game of hide and seek, and he wanted to acknowledge them.
I can still remember the first time I got through a grocery store with Hayden without any screaming. And the day that he said he didn’t want me to tell the waitress that he had autism. Today was kind of like that.
Before we went to the park today, I asked Hayden to read his school book for ten minutes. He said ok without any fuss and said, “I’ll set my timer.” He grabbed his iPad (for the timer) and disappeared to his room. I went up ten minutes later to see if he wanted to come with me and Rylie to the park, expecting him to say No and ask for time on the computer instead. But when I walked in the room he said, “I know my timer went off, I just want to finish this part.”
Um, the timer for your very-much-non-preferred activity went off which would allow you time for your very-much-preferred activity, and you’re going to finish the chapter?
I said, “Would you like to come to the park with me and Rylie?”
“Ok, yeah.”
He chose to play at the park over time on the computer. But I guess he’s really always been that way.
Hayden and I have proven many people wrong. But it was never about that and it still isn’t. It’s only ever been about making tomorrow better than today.
For Autism Awareness Month, what I want the world to be aware of is that kids with autism can improve. Not every child will make the progress that Hayden has made. For that I do feel lucky, but I also know how much work has gone into where he is. People look at us in awe, I know that. But they may not see the real effort that has been put in, from me and Joseph, from his therapists and teachers, from his doctors and other helpers, and most of all from Hayden himself. It’s certainly not all about luck. It has also been about a great deal of effort, money, creativity, patience, laughter, and tears.
Every child with autism can make improvements to their quality of life, with the right interventions.
Not every day is easy. Autism still brings its tough moments. Sunday was one. But today at the park, I was reminded of all that he has overcome, and the amazing possibilities waiting for him. I love the journey we’ve taken so far, and I’m so proud of him.
When others try to tell us what’s not possible, he inspires me to push for answers and fight for a better life for him, and for kids like him. Every person deserves to be able to communicate, to live without pain, and to have the opportunity to be the best they can be. Today my wish for all kids with autism and the families who love them, is to have the chance to live their very best life.
Autism is treatable.
Hayden is Hope.
#FUA
