So often, I think about writing a blog entry here, and get overwhelmed by all I want to catch people up on. I didn't used to be that way---I'd write multiple entries a week, sometimes. Either I'm getting older, which of course I am, or as Janey gets older, the issues I have to write about are different. Day to day life isn't as challenging as it was at times, but week to week, month to month, year to year life feels more complex, less easy to sum up.
One big happening is that Tony got guardianship of Janey, officially. I wrote about the endless seeming process we had go to through for this. He finally had the day in court, and after hours waiting in the courtroom to be called (luckily we decided against bringing Janey to court with him, which wasn't required), the judge approved the guardianship without any real problem. It does have to be renewed every year, because of the medication she takes, but she is assigned an attorney for this, and it shouldn't be as tough a process. We were adviced just one parent should be the guardian, in most cases, so we picked Tony. It doesn't make a big difference day to day, as Janey wasn't really apt to make a lot of decisions on her own, but for things like financial issues or health care issues, it just makes things more straightforward.
Another happening---Janey finally started getting social security. It took over a year for her application to be processed, but she was approved, and gets a monthly payment now---not enough to live on, certainly, but it helps a lot. We are getting retroactive payments back to her 18th birthday, too, in several installments. We are using her money for the special food she asks for, and for clothes and pull-ups and so on. This is the kind of social security for people who will not ever be able to work, and I'm very glad it exists, but if she didn't have a place to live and a family to care for her, it wouldn't go far at all. But in our situation, it is helping quite a bit---the years since Tony retired have been tight ones financially to be sure.
We are currently in the middle of yet another endless process---what is called the 688 application. It's the process for getting Janey services when she turns 22, in less than 3 years now. It involves a referrel from the school, us sending in huge amounts of documents, then in this case, us getting back requests for even more documents, mostly it seems evaluations from all different phases of her childhood. It's not enough to show she has severe autism---I guess we have to show she's had it all along, or that we didn't just somehow try to game the system by getting one diagnosis along the way and then just coasting along on that, reaping in all the exciting benefits it gave us.... I simply can't understand it can't be an easier handoff from school to adult services. And from what I hear from other parents in Massachusetts, the services actually available once Janey turns 22 are very limited, even for those with severe needs.
This ties in a bit to one good development. Janey has started an after school program. She hasn't been in one for many years, since she was about 8. This one is especially for people in what's called the transition program, the life skills program in the public schools for people 18-22. It's 4 days a week, and there is transportation home (without that, we wouldn't have been able to do it, as in the evenings a drive to her school could take up to 2 hours in Boston traffic each way) On the days Janey goes to after school, she gets home as late as 7pm---that is after leaving the house at 6am! It took us a bit to decide whether or not we wanted to send her, but what it really came down to was that there just aren't many opportunities out there like this one for people like Janey---a chance to socialize with her peers, to have music and dance lessons, to live more of her life not just being home with us. From what I hear about what's out there for those like Janey once they are 22, she might have many years of being home with only perhaps a day or two of a program a week, so we want to give her what we can for recreation and time away from her dull parents while she's still under 22. We hope she's getting adjusted to it---there were some reports of tough days at first, with some crying, but we are continuing to be so impressed with her school and how much they care for Janey, and work hard to make her happy and keep her engaged. We talked to the after school director the other day, and she was making fried rice with Janey---having realized the key to Janey is plenty of food that's been freshly prepared!
We are very happy with Janey's new teacher for the regular school day, too. Janey still gets to see her beloved Jamie a lot, her high school teacher, but her new teacher, like Jamie, is so caring and enthusiastic and just seems to get Janey---it's hard to believe she's had as wonderful teachers as she's had year after year after year.
Over Thanksgiving weekend, Janey has a tough time. We aren't sure what was up---if she didn't feel well, if she was confused by the afterschool starting, and then it being a half day before Thanksgiving, then a 4 day weekend---Janey isn't a huge fan of routine changes like that. Whatever it was, she cried and screamed and was unhappy all day long for four days or so. It was a horrible flashback to the past, when that kind of time happened so much more. But it was also a good reminder of how far we have come, that we rarely have that kind of time any more. Most of the time, Janey is pretty content. She likes what she's liked for years---car rides, watching Tony prepare food and then eating the food, taking way too many showers, and watching certain episodes of certain TV shows or selected scenes of certain movies over and over and over. Right now, it's mostly Vampirina, Fancy Nancy, Little Einsteins, Encanto and Toy Story 4. We are never quite sure why she gets into the shows she gets into, but boy, does she love them once she does.
With Christmas around the corner, I have the bittersweet feeling I often get, but less than I used to. Janey isn't into Christmas. She likes the music, but otherwise, she doesn't care---she barely notices the tree, she doesn't generally like presents, she isn't happy with routine changes it brings. I think I've accepted this, and allowed myself to focus more on the boys for Christmas, even now that they are getting into their later 20s. It's a little bit of a regret of mine, that it took me this long to really accept that what she wants for Christmas is a day like other days, and we can give her that as much as we can while still making the day special for the rest of us. I hope that all of you enjoy the holiday season in a way that works for your family. I hope 2024 is a good year for all of us. Janey will be turning 20, and I hope to keep writing about our journey with her through her 20s and beyond. Happy Holidays! Merry Christmas! Happy New Year!
