I’m a bit sideways right now, I’m actually heartbroken in a particular way. In between tragically and disappointed – but more towards the tragic, honestly. They (our waiver provider) decided to close down Edda’s aftercare in the fall. I’ve always relied on the aftercare to cover our “regular” working hours and it was a community for Edda to be part of. If an in-home caregiver left, I always had what I considered “core hours” covered. And they did camp-like things, cooking, crafts, movement, music. Before the pandemic, they were starting to go on outings. This is funded by a medicaid waiver that Edda qualified for when she was in middle school. Anyways, during the pandemic, they approved emergency measures that family members could sign up and get paid (when folks didn’t want other people in their home) and that virtual services for camp were OK as well. So understandably, people did do these things and it was hard! We did aerobics and music on zoom, like, really, wtf? And lots of people signed up to be paid to be with their disabled kids, because there was no choice. We didn’t because we were always looking for other people to be with Edda, but really, never finding anyone since beloved Kitachi left last summer. But just a couple of weeks ago, these “emergency” virtual and family as staff changes became permanent going forward. So the waiver provider has expanded – I think – virtually with parents as the caregivers and, really, the overhead/staffing of the in-person camp was not worth it in the end. There are many ways to be sad about this. I understand that our provider probably has hundreds of families as their clients and only 15-20 families at the after care camp. But does anyone think that virtual services are good with kids with disabilities? I guess it was such a small percentage of people taking advantage of the in-person camp, so in the end, who cares? Maybe everyone else loves having these services in their home. OK, best case scenario is that you are hiring someone to get Edda out into the community, but can you really put together a band, a yoga instructor, cooking plans, craft plans just for your own kid? I just imagine lots of families at home with their disabled kid, qualified for these services, and just sitting at home as we will be – I guess being paid is better than not being paid. Maybe I’ll sign up and get the $19 dollars an hour for being with Edda. Edda’s world is getting smaller. There are going to be fewer places for her to hang out. The adult placement is going to be problematic. I’m not sure I’ll find a program for her to go to during the days. Also! We’d been going to camp for many years, we didn’t know our last day was our last day. I didn’t get to say goodbye. Yes, there are other providers who do this work, I could switch providers, I guess, but are all the in-person camps going away? I’m not sure providers are motivated to provide an in-person camp anymore. It’s a lot easier to do virtual stuff.
Of course, this reframes the idea I have for my own life separate from Edda. I had/have an application in for a nurse practitioner program in the fall for which I have an interview on Thursday for. I was on the fence about the program, mostly leaning away, but with no steady aftercare for Edda in the fall, I don’t think I can possibly do the program. And then I think more expansively – ok, what if the adult placement in 3 years goes unsuccessfully and Edda is home with me during the days. How can I keep my/our lives forward-looking and rich and rewarding? What community can I place myself into and have Edda be part of? How can I keep my body/mind strong and steady so I’m not overwhelmed with what will need to happen? I’m so lucky to have a primary job where flexibility is great and it pays well and etc. I will forever be grateful for the job. I have the same deep-gut feeling I had when Edda was 2 and first diagnosed and I didn’t think we’d make it as a family and it was going to be a terrible, awful, sad life, but we made it to Edda’s adulthood just fine with lots of great experiences and memories. I know I can do it al least once again another 18 years, that’ll take me to 68.
When things like this happen, and I start to feel sorry for myself, I do try to remind myself that there are people who will help me even though it feels like there is not enough help to go around. And that I’m not the only person in this situation. I can get anxious about losing Jeremy’s help – that he’ll get into a bike accident or something.
It was Megan’s birthday on Thursday. I hosted a low-key b-day party on Friday night where I cooked my famous peas/ravioli dinner. Lol. We poured layered drinks and had ice cream cake and we worked on an at-home murder mystery puzzle that was fun.
Tianpei is staying a couple of nights here for a music audition and he performed a bit during dinner. Beautiful!
Jeremy is off on a bike ride again!