Monday, September 13, 2010

New School Year

     Well, B has started grade seven. Her teacher is quite pregnant, which delights B to no end. Yesterday she took a biology book to school to explain how pregnancy works to the teacher. I think that was very helpful. The teacher may not know.
     Last Thursday I picked her up at lunch to take her to the Centre for Ability to apply for supported daycare. We will go on a waiting list, and it will take awhile to get it. What type we'll get, we don't know. But she can't attend after school care without it. This is one of the many extra steps parents of special needs kids must go through.
     When she first started daycare it was very hard to find one to accept her. Most places and people I talked to expressed discomfort about taking a child with seizures. And, while I can force places to take her (I have before), I don't really want to send her to any place that is uncomfortable with accepting her.
     I did eventually find a terrific daycare for her that she loved. But later, when she entered school, I found it difficult to put her in after school care even though the school had two such options on site. The YMCA had an after school program and I signed her up, but on the first day they told me they wouldn't accept her without supported daycare. I had to scramble for two weeks to cover the afternoons so that I could attend class, go through the long application process, and then I literally had to force her in before the support showed up because I needed some place to take her in the afternoons.
     She was in the after school care for the rest of the year, and no support worker ever came.
     A year later I tried to put her in a program at the school for children of single moms who needed extra socialising and homework time, and they wouldn't take her. Because her seizures made her "a liability". I went to her doctors and got notes saying she could attend, but the notes weren't good enough. After some time, I managed to get an appointment with the VSB, we ironed out the details, and I was sent back to her doctors with an exhaustive and detailed list of activities that I had to get them to okay. It took a lot of time, these are all specialists that we can wait months to see.
     Finally, I had all my i's dotted and my t's crossed.
     And the school year ended and we moved. All that extra stress, on top of school work and B's health needs, and she never got in. I shouldn't be too surprised. When she started school I had to sit outside her class room, all day, every day for two weeks, or they wouldn't let her go. In a school of 600 students they had not one person trained to deal with seizures.
     Over a year ago I signed her up for the YWCA Big Sisters program and got a phone call from them saying she'd never match, that no Big Sister would take on a child like B. This seemed to be contrary to the information I got from friends already enrolled in the program. They said that it was one of the screening questions, and most Big Sisters agree to take on disabled girls.
     I was disheartened. But then a lovely friend stepped forward to do it, and we enrolled them in the program together. And now I have to talk to people at the Big Sisters program once in awhile and act like they did the match. I am rolling my eyes as I type that.     
     The point I am making, not to belabour it too much, is that to do the things that most parents do with their kids takes us considerably more time and energy, and often that energy does not pay off. If you think that most places that should be inclusive are inclusive, you are wrong. All sorts of sports and recreation programs and old standbys like Brownies and Girl Guides? All out. Unless I decide to attend every one of them with her, and then what is the point? The point is to foster independence. That does not happen if I am there.
     So, just to warn you, if you ever say to me, "Hey, why don't you sign B up for X, Y, or Z!" You will get SUCH a look.

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