It's been a rough start to the summer with Janey. We are seeing behaviors we haven't seen for years---long days of screaming, lots of arm biting which comes close to breaking her skin, crying for hours. It's not every minute of every day, and there have been a few better days mixed in, but overall, it's certainly been a tough time.
We really have no idea what is causing this unhappiness. Some of it is probably just the change in routine that the end of the regular school year brings, but it hasn't been this extreme other years. Janey had quite a good year of school, overall, and most of the time enjoyed the new after school program. I imagine it was hard to have it all be over for the summer. We tried hard to make the weeks before summer school fun for her. We did a trip to Maine to stay in what she calls a "hotel house"---usually something that makes her very happy, but this trip was mixed to say the least. It was very, very hot in Maine, and we mostly had to stay in our air conditioned room. Janey liked the unlimited showers in a nice big hotel shower, but off and on, she screamed and cried loudly.
During one of these screaming sessions at the hotel, as we tried everything we could to calm her down, I had a horrible flashback to the time we were in Children's Hospital waiting for a placement at a psychiatric facility, when Janey was 10. It felt suddenly so much the same---being in a room we really couldn't leave (this time due to 100 degree heat), having to keep Janey quiet (this time because we didn't want to disturb other guests or get that fun call we've gotten a few times from the front desk asking if everything is okay), not being at home where we have more resources to help her---it was awful. I felt like I was in despair, a feeling I haven't had because of a situation with Janey for a long time.
Now Janey is in summer school, which is never her favorite part of the school year. She goes willingly, as she always does for school, but most days she is getting off the school bus and breaking down. We always consider just not sending her to summer school, but....
The other big issue is the one that isn't new---Janey's sleepless nights. The past week, there were 3 nights out of seven that she literally didn't sleep at all. Needless to say, Tony and I didn't get much sleep either. After a night like that, we are left feeling barely human. Any respite at all is so desperately needed that any thoughts of not doing summer school are put aside. We put her on the bus and collapse. She, meanwhile, usually seems to feel just fine without any sleep. Sometimes her days after not sleeping are her better days. We very much need to try to figure out why her sleep is so variable. We do know that genetic testing showed she has the genes for a very rare sleep disorder---one that only about 100 families in the world have---but Tony also has the gene, and he doesn't have the sleep issues she does. It's a rare enough disorder that there isn't much information on it out there, and we have been putting off joining a study about it because, well, we are just kind of overwhelmed and not really ready for all kinds of medical tests that would involve, but we probably need to join the study, at least to try to understand what's going on more.
On the uncommon days lately that Janey is happy, we have seen something we often see when she's been having a very tough time---improved talking. It's strange how that seems to follow or be interspersed with tough times. She's asking for specific songs she wants to hear by name, she's using a little bit longer sentences, and she's doing something new. When she asks me something like "want to go for a car ride?" and I say "you need to check with Daddy about that" (I don't drive anymore), she will say something like "I will ask Daddy 'Daddy, want to go for a car ride?'" She rehearses what she will say. She's done this 5 or 6 times, and it really blows me away. It's like a little glimpse into her thinking, something we so rarely get.
I hope these tougher times are just an blip, that the easier times we've had for a while now will come back. Like the flashback in the hotel room, it's so easy to fall right back into the old feelings of hopelessness when faced with screaming and crying. And it's so hard to have the energy to do all we can to keep her happy when we don't get sleep. Hopefully, as this hot and restless summer bears on, things will get easier, for us but most of all for Janey.
