Families of children with autism, especially mothers of teenagers, were on social media during and after a Dateline NBC story about adults with developmental disabilities. One mother posted that these children have “what appears to be a pretty dismal future.” Another said “our kids will be just ‘in storage’ and regress. Someone replied that schools could be taking children into the community all day but that the community needs to fund adult programming, embrace inclusion of our kids [i.e., adults]. The original poster commented: Too many of the problem behaviors that our kids will have as adults could have been prevented. This piece introduces the dilemma: school safe, or community-ready?
My hasty reply in the post-Nightline discussion was: I’ve been working on preventing behaviors for a long time. It involves taking risks.
Parents want it both ways: train independence on the one hand, but lock the doors so the boys don’t wander out. Train janitorial skills, but don’t leave hand sanitizer where it might be tasted. So what I do is what probably only a parent can take responsibility for: risk.
Typical teenage boys into mischief might sniff glue, or try to break into a liquor cabinet, or drive when they shouldn’t, too fast. My late husband (lawyer and Ivy League grad) professed to sticking his finger in an electrical socket, and blowing up an experiment in the basement. He and friends drove around Austin smoking pot in the car, and bathing nude as young adults. That’s what I remind myself as I watch over our son.
So I take him into New York City’s famously crowded Times Square, which he loves, and, when it’s less crowded, I slightly relax my grip on his backpack. We’ve been on the DC Metro and nearly ended up with him inside and me outside of closing subway doors.
My son was 14 lit up and may have chosen his future vocation when he heard from a woman I was interviewing (who has since become one of his most trustworthy aides ever) about being a janitor. The challenges to his being a janitor may be insurmountable. His history of tasting and not fearing non-foods – “pica” is the medical term – has probably taken years from my life!
Toxicity and mortality are nothing to a teenage boy of normal sensory-neurology, who would smoke a discarded cigarette from the curb, chew gum from under a table at a coffee shop, or take a pill from a friend’s medicine cabinet.
Castigating a teenager is useless, sad to say. Scientific studies show teenage dopamine levels are higher than younger or older people’s. Consequently, positive rewards and aspirational thoughts are somewhat effective; whereas “lecturing” has no effect. When I give my son a piece of my mind that way, only I feel better. Our negative words as parents become to our children like a ring-tune on someone else’s phone: a ceaseless annoyance that’s someone else’s problem, not our child’s.
My model for “disciplining my son” involves two parts that tend, over time, to work with him: informing of natural consequences, and desensitizing. A third component is only effective in my own mind, not reality: telling him “No.” Last night, after a consequence of desensitizing him (he’d dumped and played with all the brand-new shaving cream!), I tried just saying, or growling, “No!” As he lay in bed a few minutes later, I said he wouldn’t have any shaving cream to shave with until I could get more. I said “natural consequences, that’s what happens. If you want to look nice, and you really want that mustache, you need to use the cream, not play with it.” As his eyes drooped, tired from a beautiful spring day, he said: “tongue lash[ing].” (He can off-handedly produce a couple of clear syllables best when he’s exhausted! His spelling, when I tried to confirm what he’d whispered, was text-y: “tunguelas”.) I replied, I know chastising doesn’t work, but that’s “for me, not you.”
To review: part one is knowing that he wants to have a nice, clean face to be attractive to peers, and that he has to have enough practice at shaving using a wet razor and shaving cream in order to achieve his personal goal: a mustache. Part two is that I’m taking risks! There are issues of personal safety. The shaving cream isn’t food but looks and smells better than whipped cream. With me gently holding but not controlling his hand, he has already given himself a (temporary?) scar from shaving. He may never be able to maintain a mustache, with scissors, and keeping it clean. Hey, he only learned breath control in order to blow his nose 3 years ago.
The biggest risk, which we never let schools take, is that none of this scheme may work out. Goals and objectives may be missed. His learning curve may take more than the 3 years he has left in school eligibility. His aspiration to make it happen, however, is just as valid as my college roommate’s to become a professional ballerina. (She missed the mark.) He has desires and aspirations. Just the scale of the aspiration is different.
If you’ve read this far, you probably are burning with questions about the risks. If you stopped reading, you have probably branded me insane for taking risks, or impractical. Life is risk, but we manage those daily for ourselves as adults. So let me tell you about personal care products, my son, and his “pica” (the previously-referenced ‘eating of non-foods.’) There is no added value to calling Poison Control when you’ve already researched the safety of each ingredient in products. He and I have sat with Google and a bottle of shampoo, looking up each item and finding its function and safety, because he simply loved the feeling of shampoo in his mouth, He has mostly stopped tasting it, but that’s because he learned that the bubbles end up in his intestines and make him miserable. He hates having gas!
No home is completely safe. You might choose Clorox to kill germs, and someone else avoids all chemicals to reduce cancer risk. For us, I buy and use all-natural cleaning products, especially white vinegar, but also some commercial products. Then I leave them around. It’s not 100% safe fur him, but it’s a calculated risk. Making a product functional – substituting a positive use for an infantile one – I am desensitizing him to stop dumping or tasting it. It works! He doesn’t dump dish washing liquid anymore because he now uses it to wash dishes. Hurrah! Years of conflict that there was never any soap because he’d dumped it are over, and his aunt compliments him on his skills.
I don’t take every possible risk. The irony of a 9-11 child winding up on a TSA watch list is one I’ve side-stepped.. Accordingly, we’ve avoided plane travel since he was 8 years old. Traveling through O’Hare for a connection, myself and an au pair only got him out of the ladies bathroom, across the terminal, and onto the plane at the last minute through charity: a pediatric nurse happened in, scooped up his other armpit, and she and I dragged him as his au pair handled bags. His problem turned out to be that he really needed to use the toilet, and I found his diaper/pull-up very badly soiled by the time we were at cruising altitude.
That brings me to another aspiration that, gratefully, we achieved. Years of incontinence – mostly urinary – ended almost 2 years ago. He’d been needing to urinate 15 times a day and still had accidents and wet the bed. He finally received a useful treatment from the third pediatric urologist we’d consulted. As soon as he was well enough to hold his pee for an hour or two, he decided he had earned the right to get on a plane and travel. Aside from the money and time, I’m still wary. His good behavior over longer periods of time, I’ve explained to him, will earn my trust and possibly earn him a ticket to return to Disney World. We have a couple of never-expiring days of all-access park-hopper passes tucked in the safe deposit box for that day.