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My son swiftly steps up into the chair at Labcorp and pulls the padded armrest down in front of him. Our favorite phlebotomist compliments him as he stretches out his arm toward her, palm up. He always does so well, she says.
I agree with her praise, even though I see a younger him, in this very same room, crouching in the corner, as far away from this chair as he could get, scared and unconvinced by my increasingly insistent coaxing.
We went through years of needing extra muscle and creative strategies to arrive at this seemingly easy “always.”
He always does fine at the hair salon, on a quiet afternoon with a hairdresser who used to work at his autism school, and a promise of a treat afterwards.
This “always” developed after years of home-haircuts by an unskilled mother, often needing several abbreviated sessions for one cut, interrupted by head jerking and apologies and protests against the scissors, the electric clippers, the water, and the stray, itchy hairs.
I always pack his lunch, using the excuse to make noise in the kitchen to encourage him to get out of bed in the mornings.
But several times in the last month, he was up earlier than usual, so we packed his lunch together. He’s taking a risk, showing me the tasks he might be able to handle more on his own, because what was once my “always” might become his.
There was a time when he always chose pizza over anything else. Now, he surprises us by refusing pizza, sometimes, if there’s a burger or grilled fish on offer.
Cookies, though, are a permanent always.
There was a long, long time when he always watched the same few movies and TV episodes over and over. Their characters still make cameo appearances in our family conversations.
Now, he always watches the same classic rock music videos before bed, all these songs his parents had memorized before he did.
I always mix powdered supplements into my son’s food and cut or crush large tablets for him. I always make sure his prescriptions aren’t time-release pills that can’t be crunched in his teeth, or capsules that, despite feeding therapy and multiple lessons, he’s never been able to swallow.
Until now. In recent months, we noticed he wasn’t biting into his daily pills anymore. The world shifted when he swallowed a horse-pill sized decongestant, and within a few weeks, I showed him how to fish 2 large capsules from his multivitamin bottle to take with water before dinner.
After almost 27 years, a possible end to my always-mixing days is coming into view.
My son always spins beads, and I do worry about those. I can no longer find the exact ones we’ve bought in bulk for years, and we are almost at the bottom of our stash.
But before these beads, he always spun two rubber lizards (or snakes), and before that, he played drumbeats with any empty water bottle. He may have to adapt his always again.
He always moves my book, my shoes, and my phone to wherever he’s decided they belong. He always straightens the ketchup bottle, the patio chairs, my necklace.
He didn’t always fret about these things. These habits showed up after several house moves, after adolescence brought anxiety. He developed these actions, perhaps, to gain a sense of control.
So, although we can teach him rules, with photos and barriers to curb his impulses, we expect he will always find something to obsess about, some other item his parents have touched in our shared house.
But I hold onto this. It cannot be forever true that he will always wear the same t-shirts as he has for the past six years, a specific selection that became solidified during the pandemic lockdown. At some point, these t-shirts will disintegrate.
A mom can always hope.
P.S.
My son has always benefitted from Medicaid-funded services. Always—ever since I pushed back against our state’s first denial when he was a non-verbal toddler, and through several rounds of re-determination, quarterly meetings, and mounds of paperwork.
Despite cuts in services that always come when budgets are tight and despite an always-limited cache of providers, these programs (including speech therapy, ABA, physical and occupational therapy, music therapy, adult day services, transition to employment, and more) are the reason we see the progress he has made (and continues to make).
Please read and listen to this excellent article on the potential damage coming to home and community based services (HCBS) for people with disabilities in Arizona, and across the country, due to federal cuts to Medicaid.
Arizonans with disabilities depend on at-home services. Medicaid cuts could erode the program
KJZZ | By Amy Silverman, Athena Ankrah
“Asked about the expected impact of H.R. 1, Arizona’s Medicaid agency, the Arizona Health Care Cost Containment System, or AHCCCS, said the law ‘will impact all Arizonans and will likely create significant strain for individuals with developmental disabilities and their families.’
“’While AHCCCS is committed to renewing its HCBS waiver and continuing to serve this population, ultimately, decisions regarding whether and how to fund HCBS services are questions for Arizona’s policymakers,’ the agency wrote in an email to KJZZ.”
Our legislators and governor are hammering out budget negotiations as we speak. And, we all wait.
Previously, on It’s Like This:
There You Are
I was carrying a “Save Medicaid” sign at a recent protest, and someone asked me about the “Big Beautiful Bill” that passed last summer. I told them we’re still anticipating the fallout, and how Hakeem Jeffries read aloud my personal plea for Medicaid on the House floor in the early morning hours of my son’s birthday...
One of the guys I support would always always always, ask for McDonalds after we’d gone and walked around his favourite park. And then, one day he surprised me by saying he wanted to get burritos.
All of which is to say, your piece resonated with me, Robin. :)
My son wore the same gray T shirt and pants every day for two years after his father died, his way of holding onto what he knew. Eventually, I was able to persuade him to order several more gray T-shirts and pants. A minor victory! About a year ago, he said he wanted to be a "little dressier" for going to church, so we added dark pants and collared shirts to his wardrobe. The gray T shirt and pants still rule most days, but even minor victories are major when you are parenting an adult on the spectrum.