June 14th, 2023.
Not an important date for the world, just graduation day for my then twenty-one-year-old, profoundly autistic son.
The last day I have the security of knowing he is cared for, and kept active.
The last day I know for certain he will have somewhere to go.
For the last few months I have been researching day programs for Justin for 2024. Yes, it’s a year early, but I’m a planner, and there will be so much to do for both of my children in the next two years that I decided to get something off my plate much sooner. Getting appointments was grueling. The programs are understaffed, they don’t have ample time for tours, and he’s not eligible for a year.
However, I am nothing if not persistent. Today, I see my last one.
I know nothing will ever come close to the last thirteen years at his beloved private school for autistic children. I am mentally prepared for that. I will still require wine, chocolate and perhaps therapy after his graduation, but I am, in theory, prepared.
The truth is, the places I’ve seen so far seem to have caring staff; the one place I saw with actual clients had adults who looked engaged and happy; every facility I’ve looked at has safety protocols, and schedules.
Some even have snacks.
However, with the exception of one facility that is relatively new, there are waitlists, which for boring reasons I won’t entail here I won’t be able to put Justin on until at least February; or they have informed me that due to lack of staff they may not be taking on new clients next year. Could Justin possibly have in-home care instead? If people are willing to do it, potentially yes. Will we have to kiss a lot of toads to find our caregiver? Most definitely. Will they work more than three consecutive weeks?
That remains to be seen.
For profoundly autistic adults graduating in the next year, there is the extra challenge that all those who qualified for the extra year at school (Justin missed it by a year) are graduating next year, so there are three to four times the amount of graduates as in a normal year.
Three to four times as many autistic adults as usual, all looking for a place to go.
Something has to give. There are thousands of families faced with the daunting prospect of 24/7 care for their adult child, while trying to work, keep them engaged, and get their mammograms.
Something has to change.
In the meantime, I will go to my last facility with a smile on my face, and the truth. That my son is a good candidate for their day hab because due to his inherent nature, hard work, and a lot of luck, he is compliant, loves to go places, and happy.
I will be pleasant.
I may imply a frequent influx of homemade chocolate chip cookies.
And I will keep fingers, toes, and every other appendage crossed that next July he will have a place to go, five days a week, all day, where he will be safe, engaged, and happy.
A place where hopefully they will like him, not just a little, but a lot.
I will be profoundly grateful if you all wish us luck.
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