awareness.

                                         

  

Saturday was April 2nd, the 2nd day of Autism Awareness month. It’s the day people put blue light bulbs into their outside lights or porch lights or in their windows in solidarity with families of people on the autism spectrum. 

People spend this month sharing incredible stories about their loved ones with autism, changing social media profile pics to include colorful puzzle piece borders and awareness ribbons.

And I've said before, World Autism Awareness day and Autism Awareness month have always struck heartchords with me, in so many ways. I've spent hours with parents and students on the spectrum, playing, working, planning, listening, teaching, crying, loving. I've been the teacher, I've been someone who was touched by autism, I've loved people with autism, and thought I knew a bunch about it. I knew enough to share space and time, but I always- no matter what- left it behind at the end of each day. I could carry the moms and dads and kiddos in my soul and plans and memories and workbrain, drafting what-ifs when I had to, but I got to walk away. I got to separate work kids from home kids, switching from IEPs and if/thens to dinner and baths. 

                                                 

It's funny... this year has already been heavily marked, so highlighted with memory and nostalgia-makers. Most noteable are of course the birthday I celebrated last week as the first one I've had with the knowledge of my biological mom (see previous blog entry). And secondly, this past week. News I received Wednesday makes today's Light It Up BLUE look a little more real to me. This April, my awareness of autism hits different. The blue lightbulb, the colorful puzzle pieces, the posts... it's all a whole lot closer to me now; Bonham was diagnosed the other day with ASD level 1; formerly high funtioning autism (Asperger's), comorbid with anxiety and ADHD. 

Bonham  has  autism. 

                                                

Everything and nothing changes. It's such a strange paradox, really, how answers are just that- answers- but somehow, having the information both connects dots and creates more questions. 

I knew. I’ve known since he was little. But now? Now I KNOW. This door that’s been in front of us that’s been padlocked and bolted up slam tight for 8 years? These papers, these numbers, these words…. this diagnosis busted it down and stood dramatically, backlit, in the clearing smoke, demanding the attention of the now.   

There’s this whole collection of brainswirl - relieved, sad, grateful, angry, vindicated, pity, fear, doubt, celebration… simultaneous contradictions swimming around in my head and my existence, stirred around with the “ok now what” of it all. 

Do we do anything differently? Do we look at him with different eyes? Do we alter our expectations?

It’s not an excuse for his quirkiness or his meltdowns or his sensory issues. It doesn’t say “you get a pass” or “it’s ok, act however you want.” No, not an excuse. An explanation. It’s an “ok let’s take a second here and try to look at this from a different perspective…” It’s a “let’s go into his world for a minute so we can help him function in this one,” to me. 

I’ve always said that we can’t fuss someone into regulating their own insulin. We can’t “time-out” anxiety away, or make someone walk laps on the playground until their nearsightedness is corrected. It’s complicated. And with HFA kiddos, the ones who can hold their own some of the time, there’s an added layer of misconception or disbelief. When people say things like “he’s abusive” or “he manipulates you, Jenny,” I want to scream and cry and agree and argue at the same time. I also want to take a nap and be alone. With my kid. 

I don’t know how to do this. I know how to be a peripheral observer, to read and to love and to walk through this with other people. I can navigate the textbook advice, I can create visual schedules, I can simplify words and turn our language into pictures, but only as an outsider. Writing IEPs, finding the function of behavior, and advocating for my students is one thing, but not being able to leave it at the IEP table for someone else to take home, that’s an entirely different thing. 

And then I struggle with questions like “what if it’s not autism?” and “Did I guilt a professional into wanting so much to answer questions for me that she just said “ok fine yeah it’s autism” bc she couldn’t figure out what else it was?” (note: that’s unethical, and his neuropsych is incredible and wouldn’t do that, but it’s where my brain goes). I think stuff like “maybe everyone else is right and my kid is just a turd” (I think I’ve written about that before, actually). The “he’s abusive” and “he knows how to act, Jenny, he’s just choosing…” screams loud and takes front and center in my thoughts a ton of the time. 

I struggle. 

I doubt. 

I question. 

I drive my BCBA and autism expert friends and former students’ parents who have become friends absolutely bonkers. 

I want to offer explanation but not excuse. 

I want to advocate for him but not absolve him of responsibility. 

I watched a Temple Grandin TEDtalk today with one of my classes (they’re doing a journalism reporting project wherein they must “report on” a challenge some people face), and I cried the whole time. 

She said social skills have to be rehearsed, for people on the spectrum, like when you’re in a play. You don’t know how to do it, so you have to practice. Over and over. Rehearsal. 

She talked about the chaos, the sensory overload. Visually, auditorially… the neurological tired that must lead to ungraspable physical beatdown.

People who aren’t neurodivergent cannot imagine the exhaustion that must create. I thought I had a bit of an idea, but I’m sure nothing comes close. 

Different, not less. 

This kiddo loves hard and deeply, just like everyone else. 

He wants to have friends and play and be silly, just like everyone else. 

He has quirks and idiosyncrasies, and acts like a giant weirdo, just like everyone else. 

He loves Jesus, video games, his cats, and sushi- maybe not like everyone else, but not all of us can be that cool. 

If you embrace the blue porch lights, or the profile pic borders, or love the puzzle piece logo, do some searching or some reading to back up the awareness those things call for. 

Don’t do or say anything super differently I guess, just be aware. Educate yourself. 

They say “one kid with autism is one kid with autism,” and to me, this one - THIS kid with autism- is the one for whom I’ll mama bear. This one is the one for whom I’ll advocate. This is the one I love like none other. 

I don’t know how to do this, but God’s already been ahead of me. Thankfully. 

He planned this. 

He prepped me.

And even in my cluelessness, He isn’t. 

I’m B’s mama for a reason God only knows, and I’ll do the best I can as He equips me. 

In the words of that kid on The Polar Express, “I’ve waited my whole life for this…”