About six months ago my son was diagnosed with ADHD and Asperger’s Syndrome. This was not a surprise to me. From the time he was born he has given us challenges. He’s strong. He’s a fighter. He’s got a spirit bigger than a mountain. And he has energy to spare. We used to call him our “zero-to-sixty” kid, since he seemed to accelerate so quickly from one extreme to another, even as an infant. He was speaking in complete sentences by the time he was 2. He seemed to remember everything he saw in vivid detail. He had this amazing thirst for exploration and explanation. He amazed me.
By the time he was three and into four, these fun quirks were being overshadowed by troubling quirks. Blankets had to be on his bed in the same order every night – and there were 5 of them – even in the summer. When I bought a new storage container for his ever-growing toy collection, he suddenly couldn’t pick up any of his toys because he didn’t know where to put them. As I continued to try to broaden his palate, he began to avoid certain foods. Some made him gag, because of consistency or texture. Some “burned” his mouth (including honey – which I still don’t understand!).
I sought help from our school district, had evaluations done and he received OT therapies for a short time. His therapist spent most of the time “trying to figure him out.” He clearly had trouble with self-control and regulating his energy. He was not responding as expected to the OT, but we continued for a while. Because he tested well in other areas, he was no longer eligible for the therapies in the summer or once he started school. So, we limped along on our own, doing our best through kindergarten and first grade.
The summer before second grade was rough. It still causes shudders when I remember the day he did not want to go outside. I begged and pleaded for a while. Then I bargained with him – “15 minutes outside, then we can come back in and play a game.” He begged and pleaded with me not to make him go out. He had been refusing to go outside for several days and I’d had enough, so I picked him up and carried him outside with me. He sat on the threshold of our porch crying – sobbing – for 40 minutes while I did some gardening. Every once in a while I would try to talk to him about the fun I was having, tried to encourage him to come play in the dirt with me. He just sobbed and shook. Finally we went inside. He ran to his playroom and was completely content – not a tear. That’s when I sobbed. I knew I needed help.
It took a while to find the right people and get appointments, but we did. As school started I got the diagnosis. It stung a little, but as I said, it wasn’t a surprise. I’d spent 7 years watching him twirl in circles, do spelling words while jumping on imaginary rocks in the livingroom, line up his cars by categories. It confirmed what I already suspected. Ok. So what. He’s the same kid. We got some new ideas for therapies to help with the energy and excitability. We see a psychologist every other week to reduce the anxieties and build the self-esteem and socialization. Great. He didn’t need special classes or adaptive equipment. He was verbal and affectionate. He’s not a typical Aspie, I thought, so I didn’t pay attention to that part much. (FYI….there’s no such thing as “typical” when talking about ASD)
My child certainly struggles with ADHD. I think anyone who spends a little time with him could see that. We’ve adjusted his diet and changed room arrangements and routines to try to reduce the possibility of distractibility and loss of focus at home while we work on learning coping mechanisms for him. He’s young, he’s smart, we have time to build these skills. He’ll be ok. It’s exhausting at times (for me) when I have to follow him around to keep him on task. Even a simple instruction like “get dressed” will take 45-60 minutes without continual prompts. We’re both learning.
I’m an ADHD mom. I get looks at restaurants when he can’t sit still or starts to slide under the table. Sometimes I stare back. Most times I just stay home. We’re both learning.
While doing more research and looking for more help with some of our struggles I came across a social network site for parents of children with Autism – www.myautismteam.com. I started reading some of the families’ stories. My heart was breaking for the love and struggles these families face. There are bills not covered by insurance, threats of violence, siblings feeling neglected, parents feeling inadequate, schools not stepping up to do their part. But through all of it I saw love.
Then I read more. I found story after story that could have been written by me. I read for hours, not realizing how much time had passed. The single father that talked about the teacher who said everything is fine at school and his daughter comes home falling to the floor screaming and crying at the mere mention of homework – like a whole different child – that’s my life! As I read on, I realized that there is a reason I have 6 tubes of barely used toothpaste in my medicine cabinet as we hunt for one that won’t choke my son. I understand he’s not the only one who screams like he’s being stabbed with a thousand tiny needles when trying to give him a shower. He’s not just being difficult when he cries over certain foods and says he can’t eat them. It’s not just a drama moment when the smell in a certain isle of a store makes him nearly throw up. As ridiculous as it seems to me, he really does feel cold without a coat on a 75 degree day. Smelling soda caps, needing our kisses for each other to “match,” sleeping on a pile of books and random meltdowns are not part of a phase – they are part of him. This is my Aspie child. For the first time since the diagnosis, it really sunk in. I really understood what this meant. These aren’t just cute quirks. This is his life. And I need to help him navigate it the best way possible.
I didn’t sleep much that night. I cried a lot. It was a hard realization to come to. I am grateful to this website and the families and specialists who contribute. There is honesty, humility, support, and encouragement on every page. I didn’t know I needed that much help. My eyes were opened in a whole new way this week.
Lego is my son’s primary focus, and his comfort. That day he didn’t want to go outside I now know was because he didn’t want to leave his Lego. From now on I won’t sigh so loudly when I find minifigures in my washer. I won’t argue with him about bringing them to the grocery store with us. He has them stashed everywhere – the car, the bathroom, his room, the dinner table…not because he wants to – he needs to. I will never understand what it’s like for him to navigate a world that’s not black-and-white, predictible and completely within his control. But, I now know….
I am an Autism mom.
Robyn, Bless you for your honesty & being upfront about your situation. God bless Ryan as he continues to make his way on his journey to living his life in all its fullness. What a great kid! I pray for your strength, energy, good health & leadership as you guide Ryan along. If there’s anything you can call on me for, please ask. Peace & love to you both. Karen
Sent from my iPhone
You are……my hero……