Wednesday, February 23, 2011


     A little while ago, B told me that she was the only invisible kid in her class. By this, she actually means, "invisible disability". She's not. Half the kids have a disability that is recognised, and likely there are a couple more that have a disability but no diagnosis. But she is the only kid in her class that constantly has to be with a worker, she can't even walk down the stairs by herself, and she is the only one that barely attends class, has a parent pick her up and drop her off everyday, and has a special computer. I'm sure it makes her feel very conspicuous.
     Even if I wasn't the type of mom who feels that she has to know all about her own health, so she'll learn to advocate for herself, or that thinks that she gets to have input into her care, or thinks that personal experiences of otherness need to be freely addressed, there is no way she would not understand that she is different than other kids. She has doctors and medication and different rules at home and at school. She is disabled, and she is very aware of that.
     But I don't like that if you ask B who she is, one of the first things, if not the first thing, she will say is disabled. She is so many other things. I am not ashamed of her being disabled, and I don't want her to be either, but I don't want her identity to be so closely reliant on what the perceived limitations of disability are. And yet, other than constantly reinforcing all the other things she is, beautiful, smart, kind, I don't know how to direct her away from the glaringly bright spectre of disability which inserts itself into every aspect of her life.
     A week or so ago she was reading a book on body language. Out of the blue, she turned to me and said, "Very few people want to be my friend," and I felt such sorrow for her. How does a kid that can't interact with peers in the ways they interact make friends? She can't go anywhere without the interfering presence of her mom or another adult. At school she is apart because of the attention and support she receives. She doesn't understand her peers, and cannot engage them at a preteen level, and she is wholly isolated by the fact that there simply exist no social groups of children like her. The groups for children with developmental disabilities always include children with behavioural issues, which she just can't cope with, or require an IQ under 70, and the groups for sensitive, anxious, shy kids are never able to accommodate her seizures. There are no seizure social groups, and having a seizure disorder does not usually include developmental problems. Everywhere she turns, she's the odd one out.

     And so she has adult friends, or little kid friends, which are nice friends but not the same. And as much as I am sure there MUST be other kids like her, finding a group that accommodates moderate delay AND a sensitive nature AND a chronic health problem has proven impossible for me up to this point. And my requests to the medical profession for assistance in contacting such families have met with no success.
     And so how do I help her see past her disabilities?

Monday, February 14, 2011

B's New Meds

     Well, B has been on her new anti-depressant for over a month now, and I think there's been an improvement. She's started actually doing things without me again. She will go and watch a movie, or play on her Wii, instead of just hanging on me all day. And she's started to make things again. The other day, we made a book shaped like a hand, to write down reasons we are thankful. It's very cute.
     Also, she's more chatty. Tonight she was very entertaining, telling me all about the "Other Mother" with no eyes, with whom she made pancakes (from Coraline). And she asked me to teach her to cook, so I had her help me with dinner.
     She's still not keen on going out much, and still isn't into going to school much. Also, she's  still sleeping a lot, and having trouble with decisions. So, we've increased her meds, and I'm going to keep her other meds the same, but hopefully she'll continue to improve.
     She's been having night time seizure activity, and some absence episodes, but no Complex Partials since Christmas day. None of that really means anything, she's had periods of lower seizure activity before, but it's a nice break.
     Man, would I love for her to get back to full time school, so that I can get a job. Andrew won't give me his job, even though I think that if I comb my hair just right, we're identical!


Friday, February 4, 2011

One Of B's Gifts

     Along with reading, which B has always excelled at, one of her other talents is remembering both the words and the melody of songs. The kid is a sponge for music. I keep trying to get her interested in choir, or voice lessons, but she won't go for it. She only needs to hear a song once to get it down, and she will remember it for years, spontaneously usually.
     Two days ago, on Wednesday, we had an appointment at Hematology. B needs to get some blood work down, because we are going to suppress her period. The pediatric gynecologist needs to know if she's at risk for further strokes, so that we can decide how to do that. Birth control can increase the risk of strokes. We had to wait for the doctor for a long time, which meant having to keep B entertained. For a while she was happy wearing a mask and pretending she was the Grinch Doctor who was going to operate on me.
     I got her up to waltz with me, while I hummed. All of a sudden she said, "I know the Coast Salish National Anthem," and she started to sing it. She sang the whole thing, very well, with all the tonal changes and proper pacing. I was blown away, and I felt just so overcome with pride for her.
     Her school has a large First Nations population, 64% of the student body is First Nations. We are not First Nations, but I have always really liked the diversity of her school. The majority of the other students are English as a second language, largely Asian. This has been an overwhelmingly positive part of her education. Her school teaches a First Nations curriculum, and so she has learned so much about the culture.
     I knew, of course, that they sang the Anthem at the school, but I hadn't realised how well she had learned it until she sang it to me.
     When she was done, and I wiped my teary eyes, I told her that she had just demonstrated more cultural awareness than most people I had met. And I am so proud of her. And grateful to her classmates and school for sharing that with her.

Wednesday, February 2, 2011


     B may be the most romantic person I have ever met. She firmly believes in love and family. Sometimes I think she may burst from the love she feels. The people that she loves fill her whole world, and she becomes very upset when people get mad at her, no matter how slight the actual situation.
     It totally brings home for me the fact that I am the least romantic person I know, and that she is not a copy of me at all. She is one hundred times more sensitive, and I constantly have to work to keep that in mind.
     A big part of her romantic worldview revolves around her relationship with me. Even at twelve years old, B requires all my attention. She needs constant hugging and cuddling. I do think that any prolonged absence from me would be very hard on her, more than most children. I know the common belief is to start pushing children towards independence as soon as possible, but that has always felt counter-intuitive to me, as it has to many of my friends.  I think that you should let them have their independence as they fight for it, but that until that happens you shouldn't push them to it.
     I often see people blaming society and the media for the problems kids have today, but I despise the whole concept that the problems we have now are different and more severe than ever before, and that there is some good old time to look back on. When was this mystical time that children, or anyone else, didn't have poverty, sex, abuse, drugs or alcohol, or world conflict to deal with? Always the world has tried to wrest children from their parents as soon as possible, either through the busy lives of parents, or through the institutions that have been established to care for them. I think we're told to let go way sooner than we should, but that is not new to this society.
     The reason I am writing this is that I am intensely aware that I have been the only parent at this school, or in her last one, that still drops off and picks up their child everyday, still goes in and and spends lunch time with her, still displays copious amounts of physical affection in public. At least in her grade for the last couple of years, I mean, and in front of her peers. This isn't the fault of the other parents, they have to work, and their kids have a more developed sense of what's cool for school. B still wants to take Pooh Bear to school. But I feel very much that we're the exception to the rule, and that the professionals that work with her might push for more separation if she wasn't B. Just that underlying idea of proper parental involvement, which is sort of unspoken, at least to me.
     I think this is reinforced by experiences I've watched my friends have, wherein they've had conflict with their schools about having the right to bring their kids in late, or having the right to excuse them from school when they want to, even for very good reasons. I watch them struggle for the right to be the experts on their kid's needs, while some, not all but some, professionals challenge them. It's because of this that I feel happy that B has had so much investigation, and I have professional directives from doctors and psychologists not to push her. If not for that, this would be so much harder.
    The upshot is that I get to indulge B's romantic ideas of love and family. She is really untouched by the outside world. Not because we don't give her plenty of exposure, we do, it's just that her romanticism overrides any negative input. As a result, she's often a very positive person to hang around. Even her anxiety and depression eventually give way to her romanticism.
      B still fully believes in Santa Claus, the Easter Bunny, and the Tooth Fairy. The Tooth Fairy is my fault, every time she loses a tooth, I write a note from her Tooth Fairy to her. The fairy, Lilly TooSilly  belongs to a local Tooth Fairy union. Sometimes I feel like I should tell her the truth, but when I've broached the subject, her romantic worldview refuses to contemplate that all these entities might not exist.