Settling back in from a glorious vacation the to do list for V comes barreling towards me. These are tasks that fully consume my time and energy. It is why my answer to being asked if I work is, “Yes, I just don’t get paid.” It’s a bit too harsh though I realize, and serves as a conversation stopper, which is not my intention at all. So consider this a conversation starter for us and all the other caregivers out there because there are millions of us, all with to-do lists that can make us feel overdone and overwhelmed.
Our home therapists both just quit the agency we’ve recently started working with so even though our insurance will cover twenty five hours of services we currently have nada. The director of the agency says she’s trying to find the right person, which of course is what we want, but it may take a while. It’s been weeks and it’s clear it’s not a high priority for her as it is for us. I asked our case manager at school to reach out to staff but got no takers, even though home therapy pays much better than being an aide. Even with good wages it’s hard to find people who want to work with a young man with severe autism. We can’t even find anyone we can pay out of pocket. So we currently have no help, which makes for long evenings and even longer weekends.
We call our insurance company case manager and she suggests we find another agency and gives us the contact information for nine other agencies we might contract with, and I start making calls and doing research to try to find some place that can actually provide services. To do lists often splinter and grow like this.
Headache number two. We’re also dealing with the disappointing aftermath of a new bill passed in our state allowing a bridge year – an extra year of school for those deprived of significant learning due to the pandemic. V definitely qualifies: he had over a year with no internships or job training or help with independent living skills or the speech and occupational therapy still in his IEP [learning plan], and virtual learning was a total bust for him. But like many other districts, ours is doing everything they can to discourage us from having the extra year (while covered by state funds, they have to pay for transportation and administration). We have upcoming meetings to prepare for and a potential fight ahead to get him what he deserves and is due.
Also on the topic of fighting to get V what he needs and should be receiving, I will have to redo the long survey that determines how much funding he will receive once he is 21 because he wasn’t given the rating that aligns with his needs – it’s roughly half the funding he should be getting. Although I attended several workshops in preparation for this evaluation – there are 18 pages of questions that come at you rapid fire on a phone call – I still didn’t go far enough apparently so we will have to request a redo and hope for the best.
Even with the excellent (and expensive!) special needs lawyer we have for all this there’s no guarantee that V will get everything he needs. The relaxation of the previous week – where the biggest decisions were where and what to eat – has evaporated as I deal with much higher stakes matters as well as V’s daily needs, which are substantial.
Not a very fun or uplifting post but that’s where things are right now. Watching sitcoms at night to try to get some comic relief. Trying to remember to breathe. Reminding myself that I am not alone although having so much on my plate feels isolating and lonely. Working on feeling happy for others’ joy, and empathy for those who share my stress level, those doing jobs that need to get done whether we want to or not.