Right before Thanksgiving I was sitting down to write a blog post about how at times, I’m really glad that both of my parents are dead. And I was, and it truly is, and then my caregiver skills (e.g. warm body) were desperately needed and it was at that very moment that I remembered that no matter how small and relatively broken your family, it can still be a gigantic pain in the ass, holidays or not, and then I trashed the whole post.
My adult autistic child moved out mostly against their will over 5 years ago. Although it has ultimately been the very best decision for them, it has not been without reservations, anxiety, and downright fear. The state I live in has a variety of housing options that are (surprise) all lacking the attention to detail and skill that a “meaningful life” (an insufferable term that service providers throw out all of the time) requires. Add some historic staff shortages due to covid (why change adult diapers for $11 when you can be a cashier for $15/hr) and what was is, by design, a baseline stressed field is now a shitstorm.
I see this problem not just locally but all over the mid-Atlantic area where I speak to caregivers daily in my advocacy work. I hear of Case Managers having over 50 people on their individual caseloads, residential providers doing the work of their coworkers who are attempting to simultaneously attend to the complex needs of adults with disabilities and their own kids, and parents who are attempting to manage at home schooling when they have a child who is used to one-on-one aides. Before covid, these parents could be at least somewhat fresh to care for their disabled children after school or a day program even when they worked themselves. (Please don’t come at me with the “all kids are challenging” of course they are, they’re monsters. I’m talking about adult children who have pica, who unlock doors and run int the street naked, 6’2″ 275 lb children who require locks on kitchen cabinets). I recently spoke with one woman who was the only staff at her group home caring for two adults with intellectual disabilities for 64 straight hours as the rest of the staff had to quarantine due to Covid exposure. It’ been rough, y’all.
I had been feeling pretty well until my own adult intellectually disabled child need surgery to repair a broken arm. Well, we think they fell, they couldn’t piece together what happened. Communication isn’t a skill my adult kid has. A staff member discovered my kid, sitting on the floor of their kitchen holding their arm. Did my kid seem like they were in that much pain? Nope. Were they alone for 20 minutes or 2 hours or more, who knows? When I visit the apartment, it seems like people are in and out every 10 minutes, is that because I am there or is it always like that? All totally unknowable. Because my child has seizure disorders, there is supposed to be eyes on them at least once every two hours in addition to helping them with cooking, cleaning and hygiene.
At the Emergency Department, I truly thought my kid was having a heart attack. Having already did the FAST test I had ruled out a stroke, but the left arm pain and increased nystagmus indicated some stress. Then out of nowhere, my barely verbal child said words that I had never heard them say “I’m Scared” and this wasn’t an echolalic stim type response from Piglet but a true expression of fear. I was gutted.
While at the hospital we discovered a pretty nasty UTI, the latest in a series of UTI’s spanning the last decade but markedly increased since getting their own place. Another thing has increased since moving out of my house…their weight. By. A. Lot. I’ve complained about the weight gain, cajoled, commiserated, and took staff and child to a nutritionist all to no avail. Due to covid, outings to the pool, the only exercise my adult autistic, visually impaired, and intellectually disabled child bought into stopped. Falling on your arm with 160 lbs of dead weight is bad, falling with 250 lbs is surgery.
All this to say that the injury wasn’t observed by anyone and so the incident we stitched together is that the UTI triggered a seizure which caused a fall which broke the arm. That’s our story and we’re sticking to it until my kid can miraculously stitch together a narrative.
The surgery was long, and gory. I’m not entirely over the anesthesiologist questioning that my child had a smaller than usual trachea and mouth area…but he also has a dog named Sonny Corleone which is an off putting thing to know about a man who has your kid’s life in his hands. After surgery, my kid had abrasions on their tongue that I assumed were the result of intubation during the surgery, I know shit happens but BE CAREFUL! It doesn’t seem too much to ask.
When deciding to get surgery, a decision that I had a pretty limited time to make, and as my child’s legal guardian is ultimately my decision, one of the factors I was considering was having therapy. I respect that physical or occupational therapy is a time commitment. I didn’t meet the actual surgeon until the day of surgery (due in part to the accident happening the week of Thanksgiving) so maybe I didn’t explain fully how daunting the subsequent follow up therapy would be, but I was explained surgery thusly: The surgery would instantly repair the bone so as soon as they recovered from the surgery, they could resume using their arm as usual. Amazing news! Before surgery we had weighed the cost benefit of attempting to keep them from using the arm and decided that 6-8 weeks of immobility was simply too much to ask especially when that period would most certainly be followed by a lengthy therapy regimen which they would be less than motivated to follow after spending 6-8 weeks not using an arm and having everything done for them. When I asked the surgeon about therapy after surgery, I was told that it wouldn’t be necessary. Good news because it’s hard enough to get this kid to walk around the block let alone do actual exercise that may hurt!
The only pain medication offered post-surgery was OxyContin which, after watching all of Dopesick on Hulu, I was not keen on giving. When I mentioned my concern of having an intellectually disabled adult strung out on Oxy, The Universal Medical reaction was a shrug and the canned response “morphine doesn’t come in a pill”. Absolutely no one at the hospital said at any point to not leave my kid alone at any time while on Oxy, of course I knew better and during a magically timed appointment with my kid’s PCP for medication management the day after surgery the PCP was VERY concerned about all of it, the accident, the weight and the medication, “don’t leave them alone”. We stayed in their apartment for a week after surgery. We doled out the Oxy very judiciously and iced and elevated as much as we could get away with.
I didn’t get to see the x-ray of the metal implant until the follow up and I was just sick when I saw it. Now you can logically know that things are going to be happening and try to prepare yourself for the aftermath of seeing a metal plate in the arm but seeing those 14 sometimes ill-placed screws in my child who is still a five-year-old intellectually sent me into an anger spiral from which I am still recovering.
He butchered my kid! Why didn’t anyone notice the UTI! There are no less than 10 people who check on my child every week and NO ONE noticed a UTI? Why didn’t I notice on one of my weekly visits? Why are there still breakthrough seizures? How long were they alone and in pain? How will they remember to tell people about the plate? I had visions of my head of my kid 30 years older (without me because I am dead) at an airport not being able to board a plane because some staff hadn’t read her medical history. which leads me to the very biggest question, how can a person with the intellectual capability of a five-year-old live in their own apartment?
Then I was told that therapy would be ordered, something that I was not anticipating and something for which the support staff would have to dedicate a lot of time to with the subsequent exercises. Of course, I rearranged my already super messed up work schedule and will take a reduced workload to help facilitate. Just another reason parents of kids with disabilities are often underemployed. I’m extremely lucky to have a spouse who can take up the bill paying slack but honestly there is a higher and better use of my time that takes a backseat to the reality that direct support staff can’t do everything.
I’m pissed that we live in a world where there are no good living options for my kid. I’m pissed that a DOJ settlement in VA has made it impossible to run good congregate settings for people with disabilities. I’m pissed that they rely on so many others for their health and safety. I’m pissed that more community stakeholders don’t see themselves as such (sidebar: the Section 8 housing that my child lives in has had a roach problem for months, the screen door of their apartment has holes, there is an ancient light fixture that has wires hanging from it and has been flickering, and the badly needed bidet can’t be installed in their apartment because the property management won’t allow it…having managed section 8 properties in Ohio, each one of these issues would have been a violation dealt with immediately but in Virginia…meh…poor people should be so lucky).
Mostly, I’m pissed that it is possible that my kid relies on others to report health care needs. Coincidentally, my other kid who is visually impaired and autistic but NOT intellectually disabled ALSO broke an arm a few weeks ago. They can’t drive and rely on public transportation so live in a city with better public transport than where I live and even then, they use an electronic scooter to get places. After initially bitching about the scooter use, I acquiesced as long as they wore a helmet. They hit a bad spot in the pavement and broke their wrist. It really sucked but they were able to get themselves to the ED and have it x-rayed and set and could describe the pain level and the accident. A much different scenario.
Nobody gets out of parenting without a few disappointments, and we all lie a little about our families just to make it through the holidays. During covid, we have to lie a lot more. We have to say “yes, (insert family member here) is happy in that dysfunctional relationship” or “hey! So what that sister Betty didn’t get a Covid vax, we all know that she is nuts!” or “sure, we love spending 5 hours in a basement with the entire family (even though we have to suck it up for the kids)” or “hey, Aunt Edna loves being all alone every holiday. Remember that time we invited her in 1997 and she said ‘no’? I’m sure that NO was meant for the rest of her natural life.” We happily forget about Grandparents in Nursing homes, dead pets, disappointing gifts, slights from in-laws. Those things are easy. What’s not so easy is “is my kid safe?” “Did my adult child take their lifesaving seizure medication?” “Did the person showering my adult child remember to rinse ALL of the soap off of their body?”
There will never be a perfect solution to family, holidays, healthcare…nothing but teeth gritting and hunches.