Monday, September 6, 2010
It likely won't surprise you that in my dark hours I have many fears about B. About her safety, about her future, about her growing up and achieving some sort of self-sufficiency and having, always, some people to care for her and watch over her. Sometimes I wake up in a panic, feeling that I'm not doing enough to prepare her to be on her own, that I am failing to provide financially for whatever care or support she might need after I am dead. Most parents likely have some fears about this, as most of us learn that even careful planning cannot prepare us for a treacherous and uncertain life. But most parents are raising children who will grow up, get jobs, go to college and create their own life extraneous to their parents' lives. And, honestly, I think B might not ever have those things.
Don't get me wrong, I want those things for her, and I am certainly going to work with the intention that she will, I just accept that that may not be the case, and that my child has a real possibility of needing other preparations made. And sometimes that gets me down. Often even simple things, things other people take for granted, can cause me overwhelming anxiety when I try to imagine B doing them.
A case in point: We've been working with a nice and very thorough public health nurse to get B some supports that she has been lacking. Even though we've been in contact with the Health authority before, for some reason none of the other nurses offered any of the help that this nurse has provided. She even felt some surprise about that and is not sure why her office hasn't been more involved. She apologised to us for it.
For our part, we've had contact with them since B was born, and several times since she's been in school, and none had ever mentioned any of the things that this nurse has. The system is slippery, and even demanding and boisterous people like myself can apparently fall through the cracks.
This nurse and I were talking on the phone awhile ago and, quite off the cuff, she said that she thought that B could soon take the bus by herself. I was immediately filled with panic at the mere suggestion of it. "But what about her seizures?" I protested. The nurse said there was another young boy. older than B, that she had worked with, who had seizures and his parents just pinned a note to his jacket in case he had one.
I cannot convey adequately the horror that brings to my heart. I don't know this boy, or what kind of seizures he has, but I do know that even B's workers at school, who experience B's seizures frequently and have been trained to deal with them, often cannot tell she's having them even if they are looking right at her. Perhaps that boy has tonic clonic ones only, the jerking kind that cause him to drop and move in a way that most people will recognise as seizures, but B may not register anything but a blank stare, or she might just moan a bit and make some strange movements. The ones she has while standing or walking do not make her fall and jerk, in fact she will just keep walking but be completely unaware of what she is doing. This means the very real possibility of missing her stop or walking into traffic anytime she is outside. How big of a note will I need to let the crazy people who drive a hundred miles an hour down Hastings St. what her seizures look like in case she suddenly walks into the road? And this does not even address the long recovery time she needs after a seizure, during which time she is completely incapacitated and extremely vulnerable. It scares the living shit out of me to think of her being by herself when that happens.
But okay, lets say her seizures are suddenly controlled and she doesn't have one for a year. We still have a child that when you say, "Honey, pass me that huge jar of glowing red and green lights from the table you are standing right next to," will run into the kitchen or the bathroom, because she has damage to the areas of the brain that deal with spatial processing. Getting her to pass you something that she's standing next to, or sitting next to takes explicit and detailed instructions, "Turn around, look at the shelf, now look at the shelf below that one, now see the green thing, now pick it up." This is a child who, when you say, "Let's go to the gas station," will run out the gate and turn the wrong way even though she's been there a million times, and you can see it, it's right there.
So, write her a note, you say. But she's not going to remember she has a note. Even if it's a huge flashing note that I've hung around her neck.
After the nurse told me about the boy, and I experienced my moment of blustery terror, I collected myself and said, "I don't mean to sound so negative, but that is so very, very far from where we are right now, that I can't even imagine that ever happening."
Since then I've thought about that. I guess I'm a little surprised that she read all of B's reports, talked to me extensively about B's issues, and still made that suggestion. But then I thought, "But see, she has that problem that so many do. She's met B, and B does NOT look so impaired, and I have so long dealt with these issues that I just naturally and unobtrusively compensate for B's challenges, that the nurse has added 2 and 2 and come up with 167."
I can't imagine sending B off on the bus. I can't imagine sending her out back with the garbage.
So, if her seizures become controlled, really controlled, and she can at least find the table, and she develops a memory that holds things for longer than two minutes, then and only then, will I consider sticking a note on her and sending her off alone