End of the Rainbow

Transition day. Summer school ends today. Maggie will move on to high school next month. One of her classmates is also moving to high school, but he will be in a different class. Maggie will not be alone in the new class, however, she will rejoin friends from years past. There just are not any that many students in Maggie’s situation – that is kids with significant physical disabilities who have good cognitive skills. The few that are near her age in the San Francisco School district have generally been in her class since kindergarten. There are a few just older than Maggie who are already in high school and those kids will be back in our world once again.

Not all of the physically involved kids are in special day classes. Those that can handle it are in full inclusion (regular classrooms) so they are not in Maggie’s class. Maggie could not keep up with that and would be miserable. She would make everyone else miserable too. She’s a smart kid, but she needs things to be paced in a certain way and presented so that she can process them visually etc. It is a laborious task, but when it is done correctly, she can really demonstrate her intellect. Often kids as physically involved as Maggie also have significant cognitive impairment. Maggie’s impairment is not significant. I am certain that the damage to her brain and the repeated surgeries and illnesses have affected her cognitive abilities somewhat, but she is a pretty smart chick. She wants to interact and show everyone what she knows.

This past year she was the only one in her class who had the ability to use the communication device. That meant a lot of attention was focused on her, but it also meant she did not have any peers using a similar device. There was plenty of communication with her girlfriends and with the other kids in the class, but having a peer using a similar form of communication challenges her. And she rises to the challenge. In the class she will enter, I know at least two other kids use these devices. Maggie will love that, even if it means she is not the Queen Bee for a while. It may be bumpy getting adjusted, but I am looking past that and expecting a good experience.

Before she gets there, though, we have a month off school. Rather than a week at the beach, we will spend part of it trying to get to the bottom of whatever these medical issues are. The school nurse called again today with more alarming news that necessitated a call to the pulmonologist. They are scheduling the procedure to scope her airway and lungs and her GI tract as well. There are some freaky colors coming out of her various tubes – but she is smiling and generally healthy. Go figga. I have learned from experience, however, that anything strange is a harbinger of problems to come. You cannot ignore it; you have to deal with it.

When they investigate strange occurrences with Maggie, you always get a very strange answer. It inevitably starts with, “Well, Mom*, this is something we’ve never seen before.” And my knees get weak. I can hear the rest now. “All these strange colors…. Maggie seems to actually BE the end of the rainbow. Good news: We found a pot of gold. Bad news, it’s in her right lung. Oh, and she’s allergic to it.”

*cringe – I hate it when they call me mom