So after three long years, I think finally on Tuesday, we will have almost the same amount of Edda – care as we did the day the pandemic swept through and closed down all of Edda’s services. We have in-person school, we’ll have an afternoon bus take Edda to an aftercare program, an aftercare program that will run until 6 pm and we’ll have someone pick her up from aftercare and help her with her bedtime routine. This is all possible through a Medicaid waiver that I’m eternally grateful for. I am so grateful for the care we had in position for so long that allowed me to go to nursing school and become a nurse and that gave Edda a richness in her life that I can not replicate at home. Before the pandemic, many caregivers and aftercare programs were available (and none of these programs or people seemed to deem Edda excessively needy) and I was kindly assured (by many people who worked in the special needs community that had worked with a variety of clients) that “everyone” – meaning all the adult programs – would want Edda when the time came. And then the pandemic hit and we struggled to find both programs and caregivers. Our beloved Kitachi who saw us everyday through the worst of the pandemic, moved to be close to her family summer of 2021. Edda’s aftercare program closed down summer of 2022 due to low enrollment and a shift in focus to ? I’m not sure what. Many programs said Edda wasn’t the right fit, some programs wanted $36 dollars and hour, one program, after enrolling her enthusiastically at first and then after a week, insisted she was a safety risk and non-compliant and kicked her out without calling to talk to us first. As for in-home care, this was also very difficult to find. We found people who couldn’t drive, who wouldn’t show up when they said they would, one person fell into the deepest sleep at 2pm with Edda happily sitting next to her and I actually had to shake her awake when she didn’t respond at first to my just calling out her name. Really, the stress of all this really has thrown me for a terrible emotional loop and mental state of which I’m still trying to recover from.
Edda’s been going to the new aftercare for about 2 weeks now. Every day, the afternoon bus drops her off at home and then I drive her to aftercare. The first week, I picked her up everyday. The second week was a mix of us and Ginny doing the pickup. After it seemed like they liked her and wouldn’t kick her out, I went through the school system and rerouted the afternoon bus to drop her off at camp. So the camp/aftercare is in the exact same church basement that her old one was in and it’s very convenient. But, they are just starting up, so only 2 kids so far, which is kind of boring, but less boring than at home. Anyways, the old one closed down because they couldn’t find enough kids, so I’m kind of like, uhhhh, I hope you find enough kids.
I had to say goodbye to Edda’s afternoon bus driver. She is very funny and always smells so lovely, she likes to use scented lotion from Bath and Body Works.
