Summertime Blues

Summer has historically been a difficult time for GL. With the longer hours of daylight, he has even more trouble sleeping than usual, and it's often in the summer that his meds become less effective or stop working altogether.

This summer, he has been getting up in the night, usually for an hour or more at a time, and often multiple times in the night. Then he's up by 5:30 am, (some days as early as 4:00) wanting help, attention, or company, and frustrated that we aren't up and ready to start the day. During the day, he has that tired look in his eyes, not to mention dark circles, and is irritable and demanding. By 3:00 pm, he is screaming and pounding on the walls. He continues screaming and pounding on and off until bedtime, and often until his bedtime meds knock him out. Some days, he starts the screaming and pounding at 2:00 pm or noon, and some days, it starts first thing in the morning, and continues all. day. long.

I try to keep it real here, the good and the bad. While he's had plenty of better times, we have also seen much worse. Some people think I should focus on the positive, and if I'm having a bad day / week / month, shut up, I guess. I see both optimism and pessimism as dishonest. If people come here to give or receive moral support, pretending everything is always fun, or even always okay, is not helping. So I feel like I should blog more. I've had things to blog about, good things, bad things, even a remarkable number of funny things have happened. But I'm tired, I have a seemingly never-ending to-do list, and most days, blogging just feels like one more thing.

Hodgepodge

It's hard to find enough time to blog lately. GL's IEP is signed, sealed, and delivered. BB is getting better at mowing, but I still have to check his work. Baseball season is underway. After last season, when nearly every game was rained out, partly due to a lot of rainy Saturdays, and partly due to the low-lying location of the park, which seems to flood every time there's a sprinkle, and the Parks Department giving us a hassle about rescheduling games, (they won't let us play if the grass is wet, but they don't want to let us schedule a makeup game either) we (or I should say the league president) got us moved to the main baseball park, where all the regular Little League teams play, instead of the old park, where they had been sticking us because, even though we are also members of Little League International, in the city's eyes, Challenger Division is apparently the read-headed stepchild. We play at 9 a.m., and have to be off the field at 10 a.m., when the regular Little League teams arrive.

The first game of the season, the the weather was sunny, with a temperature in the upper 90's. And the city had locked us out of the dugouts. I'd never heard of dugouts that could be locked before, but these have a chain link fence from the ground to the roof, and a padlocked gate at the entrance. The head of the Parks Department had decided that the new dugouts "didn't look nice enough," and his solution was to lock the kids out. Some of these kids have difficulty thermoregulating. This is, after all, a league for children with disabilites. At the old park, they could have at least found shade under one of many large trees. The new park was built only two or three years ago. There are six diamonds, and I don't think there's a tree within a half mile of home plate on any of them. The Parks Department did provide two Easy-Up shelters, each about a third the size of a dugout, as the only shade for six teams. Besides being rather small for the size of the group, they were secured to the ground behind two of the dugouts. If your child were playing on that field, he or she could stand in the shade or watch the game, but not both. And only two dugouts (out of 12) even had a shade nearby. Not to mention these shelters don't provide much shade between 9 and 10 a.m. The good news is that the other Little League teams were locked out, too, and their complaints get taken much more seriously. Their complaints made the news on TV.

GL's strength and coordination got worse, while his tremors increased, he started sleeping more, (12-15 hrs a day) and occasionally drooling. His psychiatrist reduced one of his meds, and we're starting to see some improvement. His pediatrician referred him to a neurologist, who is starting with an EEG, to see if there is anything else going on.

We had bought tickets to the high school's end-of-the-year talent show, but when we arrived, everyone was standing outside on the sidewalk or in the parking lot. There were a fire truck, and ambulance, and several police cars in front of the building. We heard sirens, and a fire truck and an ambulance arrived from a neighboring town. The school psychologist recognized us from the IEP process, flagged us down, and filled us in. One of the lights in the auditorium had "popped", releasing a large cloud of smoke, which had set of the fire alarm. The fire department is right across the street, so they arrived right away. The building was quickly evacuated, but they had to wait for the smoke to clear (and clean up the broken glass, I imagine) before they could let people back in. Since we live less than a mile from the school, we went home to wait. We checked back several times, but they eventually canceled the show for the night. They rescheduled the show for a couple weeks later, and we attended. GL enjoyed the show, and several people recognized and greeted him in the hallway during intermission. The special ed class put on a substantial portion of the show, (about half of the first act) and it was good to see how well it was received by the other students and parents.

The Dive Bar Welcomes: _______

Jillsmo at Yeah. Good Times has an occasional feature called The Dive Bar where people can send her things they'd like posted, but don't want to post to their own blogs for one reason or another. Today's post hit close to home:

Tuesday, March 1, 2011

The Dive Bar Welcomes: _______

I figured rather than saying "Anonymous," I'd be a little more creative. 

Autism is kicking my ass.

Because I hate how relieved I am when the bus shows up in the morning.

Because I hate that my heart starts beating faster when it returns in the afternoon.

Because every day is like walking through a mine field lately.

Because every day I hold my breath, waiting to see if my child will be breaking things or barely holding them together.

Because nothing is helping any more, not one fucking thing.

Because no one is interested in helping anymore either, autism like this isn't so cute.

Because we have been doing this for years and beat to a pulp.

Because we have tried diets and supplements and tested pee and mailed shit samples and been on ever psychiatric medication under the sun and nothing.

Because I always scoffed at those people who let their children go to an inpatient facility.

Because I always thought that would not be us.

Because now, I am painfully, painfully aware of where those people are.

Because now, that desperation and that feeling that autism has taken far too much control and you just can't let it take anymore, that feeling sucks.

Did I say autism is kicking my ass? I take that back. 

It's not just kicking mine, it's trying to knock down my child and for once, I'm out of moves to fight back.

Reprinted with permission from: http://yeahgoodtimes.blogspot.com/2011/03/dive-bar-welcomes.html

 I've been there. For months at a time. Whenever GL's meds stop working. And during those times, we don't know when they'll end, or even if they'll end. Neither does his psychiatrist. I'm not being pessimistic here; anything more optimistic would be lying. We try one med after another, and nothing helps. Some meds make things worse, even though worse seemed inconceivable. Every time so far, we eventually found a med that helped. Things would improve for several months. Then they'd start to decline again, and we'd have to increase his dose. Eventually, the new med wouldn't work at any dose. It's called tachyphylaxis. For GL, it typically takes about a year, but it has been as long as 18 months, and as short as 6. Every time so far, his psychiatrist has been able to find a replacement that works. There's no guarantee that will continue.

Literalists and their ultra-optimism

Stolen from:  22 Words