It has been just over a year since my husband and I sat in a tiny room and were told that our son has autism. I went through the stages of grief, finally landed at acceptance, and then rolled up my sleeves. Here is what stands out the most when I think about the journey I have been on with autism over the last year.
Learning a New Language
Once I reached the acceptance phase, I dove head first into all the reading material I could get my hands on. Because of all the unfamiliar terminology it was like learning a new language: sensory integration dysfunction, hyperlexia, applied behavior analysis, pivotal response treatment, etc . . .
I started to get overwhelmed. So I took a step back and slowed down. I realized my son was going to have autism for the rest of his life. Certainly I need to be informed, but I do not have to learn everything at once.
I started researching information in smaller, more digestible amounts at a time. Doing that helped me feel like this was going to be more manageable.
A challenging part of an autism diagnosis is learning about and navigating services. We have been blessed that most of his needs have been met so far through the school system. We have a team of people there who advocate and root for our son’s success.
Questions run through my head on a loop.
He grew in my belly. So surely there was something I did to cause this. What was it?
Because of the class size and number of daily transitions will he be able to handle kindergarten? Will he be able to open his lunch container? Will the cafeteria be too loud? What if he tries to run off at recess? If kindergarten is okay, will first grade be okay? Can I or should I let myself think beyond that? Even if he does okay with the school work, will the kids treat him nicely? How will we handle it when they don’t?
How many of his behaviors stem from him having autism, and how many are him being five – or are just a part of his personality?
And does it matter? But it must matter so I know how much he should be accountable for things? Won’t that screw him up if I get that wrong?
I want to be heard.
My son has made huge progress over the last year. We can do things that were unthinkable before. But, some places may still be too much for him. He also still tends to bolt off, sometimes getting very far, very fast. I have self imposed rules, like I won’t take both of my kids somewhere new if I am by myself.
I am okay with pushing my son out of his comfort zone. However, if I KNOW a situation is going to be too much for him or even maybe a safety issue, I will decline an invitation. Usually when this happens it is pretty well received.
A few times though I’ve felt like expectations to attend certain functions were strongly forced on us. Then when I tried to explain, my concerns were shrugged off.
I think sometimes people think I am overreacting or that they understand when really they don’t.
A Few Gut Punches and So Many Highlights
I am usually focused on how far my son has come and all the progress he has made. A few times over the past year though I have been reminded that we still face obstacles. When these reminders hit me it feels random and like the wind has been knocked out of me by a strong punch in the gut. It can be something small, like having to excuse ourselves from an event that is too loud. It can feel bigger like seeing an unfamiliar kid’s reaction when my son tries to talk him.
Overall, I feel hopeful and proud. There have been too many highlights to list, everything from trying new foods to carrying on a conversation to following multiple step directions.
As a mom I worry. Then I try to worry less. Then I wonder if I am doing enough.
I am guessing that all the time in the world can go by and that will never change.