Tuesday, December 15, 2020

Ten Years in the Blink of an Eye; Just Kidding, It Felt Exactly Like Ten Years

Ten years ago today, we left Falcon with my parents, loaded Sky into the car, and headed to Riley Children's Hospital in Indianapolis for a day full of testing at the Riley Child Development Center. The appointment was long in coming. For years, we suspected there was something different about Sky. He struggled to engage positively with peers and was oblivious to all the ways that he upset kids and adults alike. He didn't seem to understand what we were saying to him, even though he had an advanced vocabulary, and often he would go from sitting and playing quite calmly to darting around the room or running in circles. It wasn't until he started kindergarten, when I could see just how socially advanced his peers were, that I understood our concerns weren't just in my head. And, when he came home from school one day and begged me to help him figure out why he was not like the other kids, I finally gathered the strength to push for an evaluation.

I still have the report from that day. It's 24 pages long, and the first paragraph ends with, "[His parents] would like a better understanding of the issues which have impacted his social interactions and recommendations to promote his academic, social, and emotional success." Reading through it now, I am amazed by how much is the same for Sky, but also by how much he has changed. Because I have it here in front of me, I want to quote my favorite part. "During interview, Sky reported that his best skills are seeing in the dark and building snowmen....With regard to emotions, he reported feeling happy when Santa Claus comes, never sad, and angry when someone jokes; he believes jokes are true and when they turn out not to be true, he thinks the other person is lying, and 'I hate liars.'" My favorite part is followed by one of my least favorite parts, "His three wishes were: 1) not to be bad anymore; 2) for the Polar Express for Christmas; and 3) not to have problems so Santa will come to town." Some kids wish for video games, a cell phone, or a big stuffed animal, but kids who struggle with autism or ADHD often just wish not to get into trouble.

If you've never received one of these reports, you probably can't imagine how simultaneously heartbreaking and relieving they are. On the one hand, to know that your child has a life-long disability is earth-shattering for a parent. When you get the diagnosis, you realize that the path you thought you were on is vanishing before your eyes, and you are suddenly thrust into a whole new wilderness. But, on the other hand, to finally understand why your child can't understand what you are saying; why he suddenly runs around the room and screams; why it has always taken two adults to parent him instead of one; why everything is so damn hard all the time? To finally have the answers to those questions is life-saving. Sky's autism diagnosis saved our marriage because we finally understood that his poor behavior and his inability to be kind to others wasn't some indictment on our union or on our ability to parent together. 

What happens next, after you get the diagnosis is almost as disorienting as the diagnosis itself. In our case, we received a detailed report of how autism impacts Sky, but we didn't also get a manual about what to do about it. Sure, there were suggestions and explanations of what some of these things meant, but there was not suddenly a case manager at my elbow to help me navigate a complex and generally user-unfriendly system to try to get him services. What you quickly learn is that many pediatricians have very little experience in dealing with autism, and the services you can get are disjointed and with incredibly long waitlists. After Stow was diagnosed three years ago, I kind of knew what I was doing, and I STILL couldn't consistently get him the services he needed. One time, in the SAME DAY, after I'd waited for months to hear from both places, I got a phone call from one place telling me that they thought his needs were too "severe" for them to help and then from a different place telling me that he was too "mild" to receive their services. Another time, after being on a waitlist for a year, I was told that he couldn't he treated there because his SECONDARY insurance didn't cover it. I pointed out that his primary insurance did, but apparently we were already disqualified. Anyway, you get the point.

Ten years ago today, when we walked out into the crisp December sunshine, after a long day of questionnaires and testing followed by a 45-minute comprehensive information dump by the person who was overseeing Sky's evaluation, the world felt the same but also entirely different. I called my parents because they were the only people I knew to call. Then I called my sister who had experience working with special needs kids. She mentioned 504s and IEPs, but she might as well have been speaking a foreign language. My sweet, precocious boy was the same one who walked into Riley that morning. The only thing that had changed was that I now had the monumental task of figuring out what the diagnosis (and all that came with it) meant. 

That night, The Temple Grandin Story happened to be on TV. Somehow Ren had heard about it and thought we should watch it. The timing couldn't have been better. Watching that movie, I understood Sky's sensory issues and distraction in ways I hadn't before. I also understood why he insisted on being squeezed. Most importantly, though, I realized for the first time that we were not alone, and that what we were seeing with Sky was not singularly ours to manage. 

That first night, and many nights after, I lay awake in bed wondering how I would ever figure out what Sky needed and how to get it. But, I also quickly realized that the only way forward was one step at a time. This is the greatest lesson being a parent to autistic kids has taught me; I don't always have to know how to help my kids. I just have to stick in there and keep trying. Eventually they will find their way.

I've written many blog posts, including ones 2 and 9 years after this first autism diagnosis. I suspect I have often thought I knew what I was talking about when I offered advice or insight on what it's like to parent or live with someone who has autism. The longer I am an autism parent, though, the more I am only sure of this: autism can be hard, but it's not impossible, and the best thing we can do as parents is to keep advocating for and supporting our kids. Each of my boys is vastly different. Each struggles due to their autism in very specific (and largely not overlapping) ways. We deal with the struggles as they come. Sometimes they waylay us for weeks or months or years. Other times, the simplest statement or adjustment in how we do or say something can do the trick. I suppose in that way, autism really is like a puzzle. 

So, I want to tell you that no matter what, you're doing great, Mama. You're doing amazing, my autistic friend. You're much appreciated, autism ally. And, to all of you occupational, speech, and behavioral therapists, thank you! Everyone, keep it up! Autism can be hard, but it doesn't have to stop us from a life filled with joy and adventure.



PS -- In the vein of always trying to figure things out, please consider donating to this fundraiser. We are hoping at a service dog will help Stow.

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