September 26, 2016
Highs and Lows
A few weeks ago Autism Speaks linked my blog to their Facebook page promoting a piece I’d written to Justin about his future residential choices. As usual there were the typical lovely responses, the not-so-lovely responses, and the downright ugly (see my piece here). I usually let the comments wash over me (or I wash them down with chocolate) but one really stuck with me. The responder wrote, “I stop reading comments that begin with ‘my high-functioning.’” As the mom of a child considered “low-functioning” (although I hate the high and low labels,) I so get it.
But I’m also the mom of a child considered high-functioning, and I so get parents’ angst on that one too.
My youngest has regressive autism, developing typically until he was eighteen months old (believe me, I harassed his pediatrician and did the CARS and M-CHAT on him compulsively, he showed no signs of the disorder). During his eighteenth month he had two back-to-back illnesses, after which he lost all his words, developed a slight rash all over his body, and morphed into a child we barely knew. Gone were the smiles, the laughter, the joy that defined our toddler, leaving a non-verbal and unhappy child in its wake.
We immediately put him on the gluten/casein free diet (the one that had seemingly no effect on his older brother), and over a period of months Zach regained a great deal of his personality, the rash disappeared, and the words started to come back. Yes, he was still autistic- his obsession with Thomas the Train and his rigidity in all things transitional let us know we still had a different child from the easy-going one we’d raised for a year-and-a-half. However, he never showed symptoms as severe as his elder brother, and a year after his diagnosis we had real hope he’d eventually mainstream in school and live a life resembling that of his parents.
Three years after receiving the autism label he did just that, mainstreaming part of his kindergarten day in a “typical” classroom, and we felt confident the sky would be the limit for this child.
But the truth is statistics tell a different story, one where only 30% of high-functioning autistic adults attend college, and even less are gainfully employed.
As great as Zach is doing, I know we’re not out of the woods yet.
The truth is I’ve never been much concerned with labels (except the ones on my shoes, I have a weakness). Even when Justin, our severely autistic child, was little, I never really hoped he’d shed his diagnosis, for I believe in this family my kids truly do have a genetic predisposition (hell, they’re all autistic). I did deeply wish for his independence as I do for Zach’s, and I admit as the years passed I knew I had to let that dream go for Justin. It’s not because he doesn’t really talk- there are plenty of non-verbal autistic adults who communicate in different ways who care for themselves. It’s more that while he can do a lot for himself he still needs help or supervision, and mostly, his interests never made it out of the toddler era even though he’s a teen (Baby Einstein still reigns supreme in this household). Despite well-wishers on my last Autism Speaks post, my eldest boy will never live independently. And while I of course worry about both boys’ futures, this is an extra anxiety I mostly keep shelved so I can function.
I still haven’t figured out how to care for him from beyond the grave. Any suggestions would be deeply welcomed.
The truth is I worry almost as much about Zach and his future. He still has his challenges, and although I am forever grateful he can communicate all his thoughts and feelings (boy can he!) we still work hard for him to be in that 30% who attend college and are gainfully employed. My husband and I are anticipating having both boys living with us after high school (hell, many of my friends and relatives still have their kids home years after college and they’re typical), given that the economy isn’t great and the opportunities seem even more limited than when my husband and I graduated.
I’m pretty sure long periods of “Kim time” will have to wait.
I admit I purposely have cultivated friendships with moms of high-functioning autistic children as well as low-functioning autistic children, as their needs at this time are so different and I personally need people who “get it.” It helps me to have friends who get my anxiety about my youngest having friends, as well as having people in my life who get that when I say Justin isn’t sleeping I’m really saying I’m afraid it’s permanent (usually they can talk me down from the ledge).
The reality is I think we should stop focusing so much on high and low labels, work toward as much independence as possible for our kids, and get that as parents we all worry about what will happen to them no matter where they fall on the spectrum.
Believe me, what happens to Justin after I die is an ever-present fear. But the little one has given me my share of sleepless nights too.
No matter where our kids fall on the spectrum it’s still hard and wonderful and heartbreaking, and each parent brings different levels of coping to the table too. I hate to see our community divided over this, as it’s so apparent we need to come together and support one another as much as we can.
And as a mom of two kids on opposite ends of this autism spectrum journey, I plan to do just that.
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