the unbroken world

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There’s a point, sometimes, when you’re dealing with A Thing, where you plateau for a bit so your heart can catch up to the place your head has been going. Well, let me back up– I’m an overthinker and an obsesser and a research-instead-of-sleep-er, so my head is always sprinting while my heart is mall-powerwalking. I can talk about all the things I’m thinking, but eventually that well runs pretty dry because… I’m not thinking anything new, just spinning my wheels.

So I could list off the names of the stores I’m passing while I try to get my heart to match up with where my head is, or I could just step back. Which I did.

A few weeks ago, I read a few things that pretty significantly shifted my perspective.

A Hair Dryer Kid in a Toaster-Brained World is an incredible metaphor that blogger MOM Not Otherwise Specified (whose blog I have been peering in on for years and years) devised to help her son’s classmates understand his autism.

The whole blog Diary of a Mom by Jess. All of it. (Bonus: she has an excellent post on “awareness days” and what she calls “cocktail party awareness,” heir apparent to “armchair activism” in my estimation.)

Dear “Autism Parents” by Julia at Just Stimming is a pretty intense and necessary essay from the perspective of an autistic adult on the flip side of the implications of how parents sometimes talk about, think about & interact with their autistic children.

This is the big one, folks. It made me realize a few critical things:

I don’t read any blogs written by autistic individuals— just their parents.

I talk a lot about how hard my children’s autism is for me. I thought I was trying to protect their anonymity & privacy by talking more about myself than them (at least, in comparison to how I used to “mommy-blog”), but it turned into a lot of “me me me” processing which, while necessary on some level, started to get a little excessive. I think I felt it at the time, but I indulged.

I have a problematic perspective of my girls’ autism as an inherently “broken” piece of who they are. I don’t blame myself for that– it’s part of the process of navigating and processing all of this, and it’s been just six months since we entered this particular club– but I was aware, going into this, that being a self-described “autism mom” is a thing that makes regular old moms into fearsome, tormented creatures who wrangle screaming 11-year-olds in grocery stores amid the critical stares of strangers and no one seems to know just How They Do It. I felt like this was an automatic destiny for me, some sort of narrowed path where my brow would be eternally furrowed while everyone around me was laughing. I watched videos my cousin texted to me of her daughter, two months younger than my girls, singing along to a song from “Frozen,” and my heart broke. I’ve been sitting here feeling everything slip away from me, watching my friends’ babies crawl right past my sweet Ham in language development before they take their first steps. I keep seeing the cracks in the wall rather than the wall itself because the light seems to shine through so brightly it hurts my eyes.

The short version of the above is that I often feel very overwhelmed and ill-equipped for the task that has been set out for me, and sometimes I deal with the loneliness and isolation and intensity of it all by needing to share with people exactly how hard it is, and so I talk a lot about the dirty parts of it. I guess what I do sometimes is skip telling you about how much fun it was to paint pictures all day and go straight to the part about what it’s like to live with constantly paint-stained hands that won’t be clean no matter how much I scrub.

Let me take a brief departure for a moment to tell you three stories:

1) On Sundays, we eat a family dinner at my parents’ house. My mom pulled Ham onto her lap and asked me to pass her iPad to her. It was out of its leather case because she’d been taking photos with it that day, and she showed the apple on the back to Ham. “Look, Hammy– ‘apple.'” The next morning, I pulled out my laptop at the breakfast table to print off a few research articles before the first round of ABA therapists came by. As I opened the laptop, the apple on the back lit up. Ham, who was sitting across the table from me, immediately pointed and said, “Ah-ah!”

If you have a child who does not speak, who is only able to produce a limited range of sounds, and who is only just beginning to attempt to imitate sounds; if you have a child with a diagnosis that counts in its criteria “cannot point,” “no shared interest or attention,” then to have that child say with perfect inflection, “Ah-ah!” to say to you “Oh, look! There’s an apple on your computer, just like the one Nana showed me yesterday! Do you see it, too?” feels pretty indescribably amazing.

2) Chicken will, given a compelling enough motivator, try to say most things– but she doesn’t “call” me Mama like it’s a name attached to me. However, in the past week or so, she has started to say “Mama!” when I leave the room. (My mom swears she did this once back around Halloween. We were leaving the mall and I went to go grab the car during a downpour. Nothing since then, though.) She has also started talking about “Amo” (Elmo) and “Beebah” (Big Bird), and converted “oh moh!” to its more accurate “oh no!” When she is upset and wants or needs something, she cries “More. Help. More.” She grabs my face with both hands and presses her nose into my cheek with a grin and a giggle, and she loves trying to balance while standing on my legs. She’s not much for eye contact, still, but she is right there with you when you tickler her.

3) I joined Hammy over in her favorite corner of the dining room where she was lying and playing with a few felt Sesame Street cut outs. We snuggled, tickled and played “I’m pretending to sleep… OH NO I GRABBED YOUR FEET!” We sat for a snack and sang fingerplay songs like “Monkeys Jumping on the Bed” and she did all the hand motions. I sang the ABCs, leaving out a few letters which she filled in on her own. We practiced using her iPad to ask in a more sophisticated way for things (“I want have cracker please”). She was grinning, engaged, energetic, and looking straight at me the whole time and I thought, “She’s in there. She’s in there and she has always been in there, I just had to find her.” Since that occasion, she has also been responding “yes”– her one solid and consistent spoken word (pronounced like a whispered “sesssss”)– with great reliability. She has also started smiling for the camera when I say “Cheese!”

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Such a heart-meltingly sweet face. I love when it is pointed at me.

 

Every parent I know has anxiety. I might be worried about “will my kid ever talk?” while other people are stressed about “normal” stuff like potty training or playground roughhousing or 2am night terrors, but I really can’t compare those things. If I know anything about myself at all, I know that my anxiety and obsessiveness is a part of my nature that is wholly separate from my girls’ autism. I might have “legitimized” anxiety because I have binders full of progress notes and assessments to go with it (“See?! There’s something wrong with my kids! It’s okay for me to feel this way!”) but I would likely be just as neurotic if all of my stress centered around standing in the grocery aisle trying to decide whether to by agave nectar or evaporated cane sugar as a sweetener for my kids’ organic oatmeal. This is kind of what I do. I’m just gonna go with it, but I’m not going to blame it on my girls and their diagnoses.

I named this post after my old blog, my very first infertility blog which was so-named to keep me trying to focus on the positive while going through a dark time. I think I need it again. My world is flawed but it’s not broken, and neither are my girls. It’s a freeing realization.

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