Edda’s aftercare saga.

Edda and I went to aftercare yesterday (and we’ll go again today). We have two (!) aftercares to try out – one this week and one next week. Before the pandemic, I think I would have had my choice of aftercares to enroll Edda in, but after the pandemic, we have really struggled to find a place that will even consider taking Edda. We could have replaced the aftercare with a person who would come to the house, but try as we might, we couldn’t find someone who can meet Edda’s bus at home reliably because most people who want the job are working during the day at a school which ends the same time as Edda’s school/bus arrival. Ginny, though we love her very much, calls out a lot, which we can manage, but this lack of reliable Edda-care really was one of the driving reasons I had to give up my nursing gig. Both finding the aftercare and managing the follow-up to leads and managing Edda herself when I had no childcare easily took the 14 hours a week (plus probably 6 hours recovery) I was trying to work at the hospital. Many many phone calls, applications, rejections, etc. This also was a sore point in the marriage – I really wanted Jeremy to take this on, and he was willing, and started to, and then I tried to forget about it, but then he would forget things or get confused and I would have to remind him to follow up with this phone call or clarify the names (every organization had an umbrella organization with one name, the actual aftercare had a second name, usually there were two people, an admin person in the office and the person actually at the aftercare and somehow, every aftercare had the word “Community” in the name, so, you know, I get it…), but then I eventually took it back over because, you know, I’m just better at it (like almost all women in all marriages), but I’m always confused by this because he is so good at complex ideas and policy at work, it’s not as if he is a simple man with simple needs. (Though Jeremy was willing and was doing it, he would probably say that he was not doing it the way I wanted it to be done and that was the source of the dissatisfaction. It is a fundamental difference in our personalities. I take care of things and I make judgment calls, don’t talk to Jeremy except at critical junctions where I present two clear options and we decide and then it’s done. Jeremy likes to talk about it and asks me my opinions about all the things at every single junction, which makes me feel like I should just do it myself if the process involves a 20 minute discussion about it everyday.) Anyways, we have a trial run this week, so I went not knowing if they would want me to stay or not. I brought my ukulele in case – because if they didn’t want me to stay, I wanted to stay nearby just in case they wanted to ask any questions or wanted help. The last aftercare we tried where I dropped her off with no formal introduction (which I have done for every other camp/program/etc that she has been in with no problem), they kicked Edda out after 4 days because she was noncompliant and a safety concern, but I think if I had been there during those 4 days, maybe that wouldn’t have happened. Anyways, they wanted me to stay so I did the entire aftercare, putting on my best first date behavior (I’m for sure better on a first date than Jeremy is) – you like me! you like us! I like you too! we are not crazy or non compliant or a safety risk! no red flags here (in the modern parlance)! Second date is this afternoon.

I also finished setting up a special needs trust for Edda (yesterday!), which also took way longer than I thought it would and also took a lot of time and emotional energy. My life admin seems high, the trust is not funded yet – but as soon as it is, it starts incurring fees and paperwork and tax implications which I just sigh at – the rules keep changing and become more and more complex. I like numbers and I like figuring things out, but it’s really just overwhelming to me. I’m like trying to protect money for Edda, but then it adds this layer of paperwork that will occur annually, or quarterly or whatever-ly, just like her guardianship will require or her SS funds. I remember a long time ago, I would often apply and get a one time $2000 annual funding for Edda (which involved getting up at 5am and standing in a random line somewhere to get a number under 200 which is when the funding ran out). Then I would have to submit the paperwork for what I could spend it on. It was hard to spend it on services (like PT/OT because it was covered (partly) by insurance) or camp (because even though it ran for six hours, it overlapped the summer school offered for free by the county for three hours) or maybe even I couldn’t fund diapers, basically it felt like we could use it on only some crappy thing we kind of didn’t need, but could buy.

The aftercare seems lovely, there is a person from Edda’s school class in the program who has been going for years, but you know, beggars can’t be choosers. This one is run by the Catholic Charities and we would end up paying out of pocket for this. At one point, there was music therapy and the therapist was playing the guitar – I Can See Clearly Now the Rain has Gone, the kids were being kids and I closed my eyes and tried to tell myself that Edda and I were held in the light. You know, Quakers and the light? I want to be held in the light sometimes, so I imagine it to be.

Vince’s last night at home was last night, after Edda went to bed, we tumbled into our bed for a final youtube video watching. We did have dinner with my parents last night, Jeremy almost all better from his non-covid cold. I’m glad we bookended Vince’s trip with my parents, the early Christmas gift opening and pot roast dinner last night. We missed out on them during the actual Christmas week, but it was because we were all getting sick and they were busy putting up drywall.

And the internet is for pets – Elka and Ivy sleeping closer together.

Ivy working out hard on the treadmill.

2 thoughts on “Edda’s aftercare saga.”

  1. I’m so sorry that caring for a special needs child has such an extra set of administrative burdens placed on you. I have a friend who has a child with Down syndrome and she’s constantly trying to figure out future care for him (she is the only reason I’ve heard of an ABLE account) and her options for childcare are severely limited. I wish you patience and send you good luck at figuring out what option will be right for your family!

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