Parenting Autism

I’m a researcher. Point blank. Doing research, knowing all the things, googling, making spreadsheets, making plans, writing lists — all of these things make me feel in control when things feel really out of control. And, uh, I’m a bit of a control freak. So when Ryan was diagnosed with ASD, I just started reading, and researching, and reading some more. I read publications by research journals and not-for-profit organizations, I read medical manuals, I read textbooks and self-help-style books, and somewhere along the way I stumbled on blogs written by autistics. One in particular grabbed my heart in a way that twisted it and made me choke.

From that point on I have been afraid of talking about this life that we all live. I never want Ryan to look back on my words and feel like on any level he is/was a disappointment or that I wish he was different. (Ryan, if you’re reading this, I have loved you with my whole heart from the second I saw you as a three cell blot, I have wanted you every day of my life, even before I knew you would be you.) I never want to make another person feel poorly by comparison; likewise, I don’t want to compare my son’s different abilities to anyone else’s. This, for me anyway, isn’t a competition. Lastly, I never wanted to offend anyone who is autistic.

Truly, I cannot wait until Ryan is old enough to explain to me how he perceives the world. I know his lens is different. What I can tell so far is that his hearing for certain things is more adept. There is something that he can see or intangibly feel around the flow or movement of water that I cannot perceive. He has a photographic memory that catalogs information with a single exposure.

When we found out about his diagnosis, we were warned he wouldn’t understand emotions or feelings. He does. He feels deeply. We were told he wouldn’t understand the concept of love. Also wrong. Dead wrong. We were told so many stupid, ridiculous things that I can’t bear to list them all. Wrong. Wrong. Wrong.

So, it is with a small disclaimer that I share about my son here. When I write about him — it is not about his inability, lack of ability, lack of want, lack of interest, lack. Ryan does not lack…

I, however, worry. Like all moms, I worry. I have fears and worries for all of my children. I am a helicopter mom that wants to give her children wings and teach them independence so they can leave the nest; which is, in all senses, an oxymoron.

When this all shook down, I used to watch him stim out and worry for him that the world was too big and too much. Then I’d look around and see people noticing him, then me. If he had a tantrum — which all kids have — frequently it was bigger or louder or longer than one would expect, and I would get nervous about what his behavior said about me as a parent. What a shit I am.

It took me some time to realize that when the world is too big and too much for him, I don’t get to struggle. It is not my struggle. I get to support, hold tighter, love harder. It is also not my job to apologize, identify him, or make an excuse. (That is not an easy thing to overcome.)

So this week, as we started soccer practice, my nug’s first “real” team sport, the thing that always happens happened again. I preset the league that he was autistic. He had a few instances where he stimmed out. He needed one-on-one support. He stood out…just a little more than the other five year olds. And the coach pulled me aside afterward. He started with telling me how long he’d be in education for and that he had some thoughts. And before I could even think, I blurted, “We know already, I told the league. Ryan is autistic.”

The coach blinked, “I know. No, I know he is. I was thinking it may be good to get a student majoring in special education who knows soccer to come out weekly to work with him one on one. This way he gets some extra guidance, they get some real world experiences, and all said I think he’ll do great. Would that be okay?”

And part of me was relieved. And then later that night part of me was frustrated. I get he can’t take one hundred percent of the attention of a single coach, but I want him to participate and be part of a group. The more I perseverated over the idea of him having a one to one in a community-based activity, the more angry I became. And then I realized I was just sad. Because I want him to just go and be and do, like any other kid…

It was Eric that reminded me that he is going and being and doing like the other kids. Just like them. And I snapped back to reality, again, realizing that I don’t have to feel this negatively. How lucky are we to live in a community that will support this little monkey in being the best kindergarten soccer player he can be? Duh.

Lightbulb. Pop, crack, explode.

So here is my cute kid, who insisted on orange. All the orange. As much orange as we could find. His twin sister insisted on all the pink. Saturday is their first game. My two kindergartners, chasing a ball down a field. While their mom sits on the sidelines and worries about whether they’ll have fun, make friends, score a goal, and feel good as tiny humans when the day is over. That’s about as normal as it gets around these parts.

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| Filed under autism

2 thoughts on “Parenting Autism

  1. I can only imagine how hard it can be to not feel over protective over Ryan. I think the coach’s suggestion spoke volumes about how he wanted to just include Ryan. Ryan having that extra attention allows him to become more comfortable and learn some extra skills. I applaud the coach for not letting Ryan get lost. And I applaud you for allowing yourself to be frustrated about it but then see the bigger picture. You have been such an amazing advocate for Ryan!

  2. I have stumbled on your blog awhile ago and follow you on IG (ltyx). I am a mother in a wheelchair. Have a disease from birth. I just wanted to say that through my own experiences growing up plus dealing with access to my kids’ activities and such I learned that true accommodation and acceptance come by providing our kids with equivalent experiences. It is not about laws and regulations. I see where it looked like the coach was excluding Ryan but he was also meeting his needs while ensuring he has the same childhood goal: to play soccer. It is interesting because now I struggle with how my wheelchair affects my kids’ experiences. I see it as (using soccer as analogy) while Ryan has different needs on the field, my kids, who do not have different needs, are affected by whether or not I can get to the game. A good coach wants all of our kids’ needs met and all of them to have mom there in the cheering section.

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