Families deserve better than ‘acceptance’
Yesterday I was grateful that this month is June and not April. If yesterday’s struggles had happened during Autism April, while my social media feed often showcases saccharine acceptance messages, I might have had to tie my hands behind my back to prevent myself from starting a ‘discussion’ with members of the autism community who view any feelings of stress or frustration as evidence of insufficient love. The trendy insults usually follow: I’m ‘ableist’ or a ‘martyr parent.’
I love Leah with my whole being, but hiding her reality behind trite messages accomplishes nothing for her. Her autism has significantly limited her independence, and no, I will never happily accept that.
My day was dotted with needs: A case of swimmers’ ear that resisted non-prescription remedies; a musical instrument needing retrieval from a repair shop before the night’s band practice; a therapy client whose session really couldn’t be postponed. Twins with first summer jobs and a husband with a full-time employer/provider of our health insurance that tends to prefer it if he shows up to work.
And first thing yesterday morning, Leah’s scheduled 1:1 aide called in sick. Leah receives services through a waiver program, administered by state-approved agencies. There’s a perpetual staffing crisis, so I cannot remember the last time I had aides available on all the days and times I need them. Our agency also does next to nothing to assist families with scheduling. When the 1:1 called out, I had no help from the agency with plan B, and knew I was about to spend the rest of my day figuring out which of my options for getting through the to-do list was least bad.
A compromise can feel more like a problem than a solution
The reality behind the day’s first tradeoff was Leah’s resentment at being dragged along to her sisters’ activities. That’s a pretty normal feeling, except where a typical sibling might sulk, whine, or argue, Leah’s methods are both more direct and more dangerous. She has tried to force me to stop the car in enough creative and hazardous ways that I realized my best defense right now is to find ways to leave her at home when I need to chauffeur her sisters, at least until she sheds some adolescent angst and maybe learns to chill out.
So instead of addressing the swimmers’ ear in an office visit, I paid $59 for an online consultation that required no driving. I’m lucky to have the funds available for that. Many don’t. But if the prescribed drops don’t clear up the earache, we’ll be treating a raging case of parental guilt in another day or two. All of this hand-wringing, by the way, is on behalf of a young woman who will be 19 in a few weeks.
Should so-so ever be satisfactory?
If I surveyed every parent in my neighborhood, I wouldn’t find any whose aspirations for their future 19-year-olds topped out at ‘just OK.’ Yet families like mine make so many compromises that mediocre can start to look good. In the past I’ve left unreliable aides in our rotation because some help is better than none. I allowed one to continue with us for a couple of months too long, because while she did very little actual work with Leah while they were together, she was the only one who could cover a couple of the days and times I needed in order to keep my job. Leah's team is a good group right now, but I’m one emergency away from letting my own clients down (which has happened before), or worse, my children.
Intertwined with my frustration when I advocate for more or better services for Leah is deep sadness that we need them at all. Autism’s biggest theft from Leah was her ability to reliably act in her own best interest. An epidemic that robs young adults of that fundamental, necessary life skill is not, and never will be, acceptable.