Saturday, June 25, 2011

B's Rage

     So, we're taking B off the Citalopram. Her incidence of insomnia and rage did not go away with a lowering of the dose. She was engaging in dangerous and abusive behaviour at home and at school. Apparently citalopram can cause bipolar like symptoms, and boy, has she been having those. It sucks to wish your child was just morbidly depressed again.
     The past month has been stressful, and even though the school year is essentially over, I've still taken her out of school for the remainder of the year. I don't want her getting a reputation for disruptive behaviour at school when it's meds, and it just isn't safe for her or the workers.
    On the plus side, I've been doing a LOT of walking. For exercise, stress relief, and mental housekeeping. Cheaper than drinking.

 I really hope the insomnia and rage stop with the meds. Hope for us.

Wednesday, June 8, 2011

B Has A Recent New Problem

     Lately, B has been experiencing some rage, which her psychiatrist and I think is from the Citalopram. She had what almost seemed like a Mixed State  a couple of times in the last week, at here and at school. Although, a Mixed State is a syndrome under bipolar disorder, and B is not bipolar.
     She was physically aggressive with me, Andrew, and her worker at school, which is NOT like her at all. It was scary and heartbreaking, and the screaming at four in the morning made me fear the police would be called by a neighbour. It took a very long time and a surprise visit from Grandma for two days in a row to calm her down. Plus some Ativan.
    I've dropped down her Citalopram, and we see her therapist this week. I also bought her a bucket of toys that she can open AFTER seven days of non-violence. I don't want to punish her, because I think it's her meds, not her, and besides, punishment doesn't work for a kid who doesn't remember why she's being punished.
     She's still sleeping in her own bed, with the dog. Now I have King sized bed all to myself, and I can't stop sleeping in the top corner, which was all the space I've gotten for years.  :)

     I hope next week is better.

Tuesday, May 31, 2011


     May has been VERY busy for me. I have been doing some web work stuff for my brother, finished a 2nd draft of a novel, and have been walking miles every day with the dog. I love it, B not so much though. :)
     My bed has been very crowded, and since B's having less seizures of late, I'm going to move her to her own bed. Andrew picked up a video baby monitor so that we can do that. I still want to be able to see her, but her and the dog can sleep  in her room.
     Part of the reason is that she frequently has trouble sleeping, but if she's in MY bed, she won't leave me alone so that I can sleep. She needs to learn to entertain herself if she can't sleep. I have very easily disrupted sleep. and develop insomnia at the drop of a hat. I am also very easy to wake up. Over the years, this has developed even more as I watched B for night time seizures. I feel better with the monitor though, and trust that I will wake up if she seizes.
     I feel good knowing that Sparky will stay with her all night. Yeah, yeah, he's a dog, but I swear he understands her.

Sunday, May 15, 2011

B's New Old Friend

     I haven't written in awhile because I have just been so busy. I have been doing some work for a website for my brother's construction company, and it's been huge. Also, since it's the first web page for them, we're working out all the kinks.
     We also took in Sparky, my brother's 12 year old Lab. Sparky was a puppy when B and her cousin D were babies, but he always lived with my brother or mother for all those years. He had a companion dog, Bo, who was just recently put down, so he was lonely at home, and my brother was taking him to work, but Sparky had to sit in the truck most of the time, which was no fun. My brother realised that he needed to be with someone home more often.
     So he's here, and he is just the best dog for B. He is a real kid dog, and right from the first day followed her everywhere. Wherever she is, he is. If she gets in the bath, he lays in the bathroom. He gets into bed with her at night, and stays there till she gets up. I don't remember him being quite that way with my brother's boys, but he is one of those dogs that NEEDS a kid. He adores her. And she is so happy to have him. All around, it's been great. My boyfriend really likes him too, because he's so well behaved.
     He's great with the cat, and although a bit aggressive on leash with other dogs, he's fine off leash. He's protective, and there's been a couple of incidents about that. A couple of drunk guys in the park got too close to me and a friend in the park, pinning him between me and them. They didn't listen when he growled or I told them to back off and he nipped at one guy's sleeve. He was fine with them up till then. Although I don't want him to do that, it was their own damn fault. He didn't hurt the guy at all, and he certainly is capable of it, but he's not a violent dog.
    He's a good dog, and just what B needed. And I'm happy she has her new old friend.

Tuesday, April 12, 2011

B's Possible High School Class

     Well, we went to see the class today. B felt fine until we got there, then she melted down. I gave her an Ativan and she crawled under a table. She was wearing fairy wings. Altogether, it did not inspire confidence in me about the transition.
     The class takes about twelve kids a year for two years. All the kids are like her, sensitive and nervous. On the list of requirements for the class it said, "Able to be unsupervised during lunch and recess," and, "Takes transit independently." Both are a huge no, and it caused me a lot of concern. Sometimes they might take the kids to see a movie and then dismiss them from there. The whole idea of B trying to find her way around on transit scares me very much.
     So these are things we'd need to address if she went there. Also, I would start her very slowly and try to mitigate the issues as they arise. I don't know how I feel about it yet, but there a few/no choices. It's this kind of thing that makes me want to move her some place tiny and just let her be. Which would be better for her? I honestly don't know sometimes.
    The first step is taking her the class later this week when it's quieter and seeing if she can handle it.

Sunday, April 10, 2011


     B has been feeling pretty good lately, which I think has been because of the anti-depressants. She still has a low seizure incident rate, and why that is, I don't know, but I'm grateful for the break.
     Last Monday, her whole school had sponsored trip to the aquarium. I went with her and we had a great time. In the morning, the primary grades had a special learning class, and in the afternoon, the intermediary grades did. They were taken into a wet lab, were they could hold sea urchins, sea cucumbers, crabs, starfish, and touch anenomes. There were many tanks, and by pure coincidence, one of the volunteers turned out to be the mother  of a teacher at B's old school. She recognised B and gave B her own little tour of everything. I think B held everything in the place, and she was deliriously happy. That kind of thing is right up her alley.
     When we got back to the school, I hung out until the end of class. B had a temper tantrum and broke her FM headset. That's a device that lets her hear the teacher better. The teacher wears a transmitter. I was very unhappy about that, but it led to revelation about one of the things B can't stand about school. The teacher stands up and addresses the class, giving numerous instructions. and B has felt stressed out by this, because she thinks that she is supposed top follow all these instructions. She's not. So I had a talk with her and told her just to ignore that, and her workers will help her after the teacher has finished, and she will have her own instructions. This is the benefit of actually going to hang out with her at school, because there is no way she could have articulated that better to me than she had been, which was by saying they boss her around.
     Last night, Andrew took B to a party while I went to see a movie. B had a good time, which is a really nice change. Usually, she can't stand groups of people. But there was a three year old for her to play with, and so she had a friend.
     On Tuesday, we go see the program at Britannia. I hope it's right for her, because I am not swimming in options.

Saturday, April 2, 2011

Still Not Better

     I'm still not better. I'll spare you the gory details, but I will tell you that I'm having trouble walking very much, and I'm very fatigued. Hopefully, it clears up completely soon.
     The practical upshot is that I have missed two very important appointments for B. With the same doctor. And I feel horrible and irresponsible. And yeah, yeah, cut myself slack, and all that, but I usually do not forget such stuff so much, and since Christmas, I've forgotten three really important appointments for her.
     I am burnt out. And exhausted. And I know I shouldn't make any more appointments until I feel better. Just taking care of B and my own stuff is hard enough right now.
     But I still feel bad. When you have to interact with as many doctors as I do for B, feeling incompetent is disastorous, just for yourself. I have always considered many things in life just a bluff to make it through. Not a lie, just working yourself up to get through it. I don't know what will happen if I lose steam. I'm sitting on a medical house of cards. If I crash...
    B, however, is doing pretty good. She's had lots of rest over Spring Break, and Ice Cream. The other day, I took her in a very slow way to the park. We saw a friend there, and I asked her if she would play with his four year old girl. She was happy to do it, she is really good with small kids. She took the girl to the sand box, and they hung out with tons of other toddlers and wee ones. After awhile I wandered over and asked her how it was going. She said, in a whisper, "Mom, which of these kids am I watching again?"
     It was very cute. :)

Wednesday, March 23, 2011

High School

     B and I walked down to see the High School she might go to next year. It's in the neighbourhood.

     It's HUGE.

    Well, maybe it only feels that way because her current school is so small. She'll be going from a student body of 70 to one of a few hundred. But her class will hopefully be small.
     I find myself thinking of what I am going to do when she wants to date. How will I deal with that? What kind of things will I look for in her interests to gauge how trustworthy they are? She likely won't be too reliable in that department.
     I've already spent years teaching her about sex, safer sex, owning her body, and trying to slyly inform her that 30 is a good year to start dating. :/ I am very much not a prude, and I expect her to want to date and to date, but what if she has seizures? What if she can't read body language enough to know when someone has turned threatening? What if she and her date argue, and she gets left somewhere by herself? What if her date drinks, but she doesn't know the signs.
     Yikes, I have SO much to think about.

Monday, March 14, 2011

Conversations With B

B: How many x's and o's do I have in me?
Me: What?
B: You know, chromsomes?
Me: Chromosomes? Uh, I'm not sure off the top of my head, I'll have to look it up.
B: I have two, two o's, because I'm a girl.
Me: No, you have two x chromosomes. If you were a boy you'd have an x and a y.
B: I pretended to be a boy once.
Me: Oh, yeah, how'd that go?
B: It was weird.
Me: How so?
B: Well, I forgot to lift the toilet seat, but it doesn't matter, because I don't have a penis!

Saturday, March 12, 2011

When Mommy's Sick

     I haven't posted in awhile, because I've been the sickest I've ever been in my life. I've had lymphadenitis and cellulitis, horrible infections, since the 1st. I've had to have IV antibiotics to treat it, and I've been in and out of the hospital. The rest of the time I've been barely mobile.
     All of which has been very hard for B. B has not been to school since I got sick, except for Wednesday when my friend took her in, because I can't take her in or drop her off, and I can't pick her up if she has a seizure. So, she's just been home, with a mom who's been barely conscious for the last week, not giving her attention, and only doing the barest momming. On top of that, she's felt worried that I might have something more serious and I just didn't tell her.
     This lead to an emotional breakdown on Saturday, the day I could least deal with it, because that was the day I grew worse and had to go to the hospital by ambulance.  I had to make sure, when I started feeling even a bit better, to sit down and cuddle her and talk to her.
     It's not that she lacks empathy, she is quite empathetic, she just has a lot of trouble expressing negative emotions and has a tendency to explode with crying and anger. It is very worrisome.
     In other news, she drew herself as a fetus, with the most amusing flipper feet I've ever seen. She also wants a skull.


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.

Sunday, January 23, 2011

B Wrote A Poem

I wish I was a big cloud floating above the school,
I wish I was the moon looking down on everyone,
I wish I was a kitten purring and having fun (just like Belle does),
I wish my dove never flew out the window,
I wish my bunny never got taken away,
I wish Andrew never fought that big scary monster in his video game,
I wish I was a big, fire breathing dragon,
I would cut down trees and make a nice house for me.

B has been giving me dragon pills and dragon DNA shots for years. :)

Thursday, January 20, 2011

Finally, Some Good News

     B has been accepted into the At Home Program! Yay! It means that she will get her medical and medicine paid for, get Occupational Therapy , Physiotherapy, Speech Therapy, hearing aid, and any medical equipment paid for. After years of no support, finally she has access to all the intervention she needs and got before entering school.
    There was a real chance that she would be turned down, so this is unexpected and happy news.
     I might even see if I can get her Massage Therapy for anxiety.
     Now, to set all this up.

Monday, January 17, 2011

Medical Treatment And What My Views Are

     I have a wide variety of friends, with a wide variety of interests and beliefs. Science minded friends, socialists, skeptics, atheists, mildly pagan leaning, new agey holistic health beliefs, and leanings towards anarchistic anti-government sentiments. It is not important, to me that they necessarily share all my ways of thinking, nor I their's. The fundamental principles of social justice, freedom of expression, personal liberty, and equality are a common ground on which our mutual friendships are based, regardless of the individual particulars of why anyone of them has such beliefs.
     I, myself, am an atheist, materialist, socialist feminist, which are all views I actively promote in my day-to-day interactions. I am extremely pragmatic, and even though I do not have a strong science background, I rely on, especially regarding B's health care, evidence based medical intervention. I am also strongly opposed to many current and popular conspiracy theories, specifically those based on faulty or fraudulent understandings of medical research, the lingering bogus belief that vaccines cause Autism being a fine example of that. It has been proven that the doctor behind that skewed his data and produced what was, at best, a faulty result, and at worst, a deliberately misleading and self serving report. The facts are that there is absolutely no link between vaccines and Autism, and all curent research indicates a genetic cause.
     Recently, a friend sent me a link to this video:

      Now, in his defense, my friend only wants to share information he believes is important, and there is nothing wrong, at all, with monitoring and criticising the medical and psychiatric fields. Indeed, any system that monitors and influences the health of individuals and society should be deeply and constantly scrutinized.
   However, this video is produced by Citizens Commission On Human Rights, which sounds all great and progressive and correct, but which is actually a front for the Church of Scientology. I will spare you my well used rant against the Church of Scientology, an out-and-out scam if ever there was one, but I will express my horror and outrage at the absolutely misleading and fraudulent criticisms of Psychology, Psychiatry, and Neuroscience put forth just in the first few minutes of this video. The biggest being that there have been no studies or research, and therefore no evidence, on the causes of anxiety and depression. A simple look at any quality science blog or site will expose that as the outright lie that that is. There as been a great amount of research on the brain and brain disorders, and a large body of evidence based medicine has resulted from that.
     Psychiatry and psychology are what is known as soft science, that is, not all the approaches are based on hard objective experimental data, but more on subjective data and studies to which interpretation and peer review must be applied to generate a consistent and usable outcome. But both are heavily driven and informed by hard science, such as Neuroscience, which does consist of hard data. To deny the useful and beneficial information and treatment that has come out of this science is a huge disservice to both people that suffer from such disorders and society at large.
     I am not going to deny that there have been, and continue to be, bad doctors, bad psychologists, and bad researchers, see the fraudulent report on vaccines and Autism for proof of that, but I believe more strongly in the scientific method and the greater ethical nature of the scientific community than I do in "alternative' sources, such as naturopathy, homeopathy, and certainly more than a group who wish me to pay exorbitant sums to have dead, volcano cooked alien souls removed from my body. And when an alternative treatment is tested, and is shown to work, that's great, but as Tim Minchin says, "Do you know what they call an alternative medicine that's been proven to work? Medicine."

     The point is, there are facts, proven, diagnosable, physically real facts that are revealed by science, and that only change when new facts appear, and these facts are not negated by mysterious belief and purely anecdotal evidence. And the treatments I seek for my daughter will be based on these facts and this research. To me, it is unconscionable to seek other treatments or worse, not treat her, based on any treatment that is not evidence based.
     So, the Scientology video made me mad. Especially as B's doctors and I just this week decided to try her on a second trial of anti-depressants for her debilitating anxiety and depression. Despite all SSRI detractors and conspiracy mongering, the fact is that depression and anxiety are physical/chemical problems, that respond best to both drug therapy in combination with cognitive therapy, and any twit that advises E-Meter testing in conjunction with vitamin therapy as a replacement for actual treatment is, at best, deluded, and at worst, deliberately misleading people. Certainly taking vitamins and eating well can help, but it is NOT a treatment for her. Well, not taking vitamins necessarily. Taking vitamins, for the most part, has been proven to not be necessary for most people, special circumstances aside.
     Do you remember the AIDS Heretics in the '90s? Well, yeah, I learned a big lesson there. You can extrapolate any amount of ridiculous belief and convince yourself it's logical. I won't be doing that again.
     Now, my friend did not know about the recent change in her medicine when he sent me the video, nor that each change or addition to her medicine involves a lot of discussion and consultation, and is never done hastily or without great need. I love my friend, and even like his desire to question everything, but for Apollo's sake, PUHLEEZE, everyone, check your sources before you send me anything meant to inform or persuade my choice in treatment for B, because I am quite well versed, as a lay person, on these subjects.
     One thing we all should all be wary of is own own predilection towards affirming our own confirmation biases, especially when such confirmations are irrational and don't have a solid foundation. And if we're all lucky, we have someone in our lives who isn't afraid to smack us with a logic stick once in a while and force us to be intellectually honest despite ourselves. I'm lucky, Andrew does that for me. I hope my friend saw that I was doing that for him. Certainly, if you read of a treatment or study you think is interesting, let me know and I'll read it, but do some verifying first.

Saturday, January 15, 2011

Thursday, January 13, 2011

Clarity, Remedy, and Transparency

I had my meeting with C** R** from the School Board yesterday, where we discussed the following:

1. Parents of disabled children have the right, just as any other parents, to be informed of the options available for their children. We can make appointments to view the programs and have the right to approve or not approve the placements we are offered. It is in the School Act. It is law. While there was no admission of an unspoken policy of preventing "parental shopping" of disability services (and I did not expect there would be), I still am still lending credence to the fact that it does exist due to my numerous credible sources. I suspect that more and more parents will challenge the problem, and want to see a more transparent and co-operative environment in the future.

2. Parents must be informed of their rights by the School Board. Yes, it is in the School Act, but people should not be expected to know that, nor to only exercise those rights that they, themselves, can uncover. Especially for parents that have English as a second language or literacy problems, they need to be fully informed, at the beginning of grade 7, of how the transition and placement process should work.

3. If the School Board is facing funding problems so that children are restricted in their access to these programs, the School Board must be honest with the parents about what the issues are. How else are we going to know that it's funding problems and not School Board policy? How are we supposed to organise or challenge the govt for more funding? Instead of just trying to direct children to wherever they can put them, parents should be told about the programs and about wait lists. From a parent's perspective, there's a fine line between mitigating and colluding. Parents and the School Board MUST be on the same side.

4. There needs to be offered some flexibility for the timing of the transition. For instance, I am perfectly willing to keep B at M** Elementary for an extra year rather than put her in a program that is not right for her. This should be an option available to all parents, even parents of "regular" kids who may not be ready just yet to transition. Sometimes kids need some extra time. There has been some talk of having just such a program at M** Elementary, and I would like to see that happen.

5. This last issue I did not talk about with C** R**, but it has been on my mind for awhile. Last night I read that the School Board is looking at recommendations for a K-12 mini-school for First Nations children. I want the same considerations made for a K-12 mini-school for disabled children. I am not against inclusion, but my daughter has spent the last seven years with an adapted academic program, when what she has needed has been a social/life skills program that actually provides the Occupational Therapy, Speech Therapy, and Physiotherapy that she needs. Parents could have a choice of where to send their kids, but instead of having the VERY limited resources available spread out in such a way that no child's needs are being met, wouldn't it be better to concentrate them? To include community health programs in the delivery? To do outreach and have clinics so that parents with children in other schools or other communities can access them?

To add to that, the current method of inclusion actually isolates many disabled children and their parents. My daughter thinks she's the only one in her class with disabilities. She's not, but she sure is the only one with the scope of disabilities she has. She has had incredible problems making friends, and every year I must go through the long and exhausting process of teaching her teachers and workers about her. Often a few times a year, as new teachers and workers come in. I want the choice of having one place, where she goes, where she gets her therapies, has the technologies, and has a consistent and specially trained staff. I want her to meet kids like her, to not be the only kid in her class that needs the level of intervention, supervision, and instruction she needs. So much of her day is wasted time, because she has to sit through instruction that is NOT what she needs. As the psychologist at Children's Hospital said, "Learning the capital of Spain is NOT what will  benefit B." The teachers and workers are great, but my daughter spends the day reading or colouring, and what she needs is a different format. There is only so much flexibility in a standard classroom to offer her what she needs.

There are other ways of practicing inclusion. I know I'm not the only parent to feel this way. I want to have a way for it to be easier to meet parents of disabled kids, without having to ferret them out because I don't know who the other disabled kids are, or the level of disability they have. A K-12 mini school would help us share resources and knowledge in a way that is not happening with only the current model available. If advanced kids and First Nations kids have enough of a common ground and special requirements to make mini-schools a viable option, then surely disabled children do. My daughter, who has a rare and complex set of disabilities, that receive no funding, acknowledgement or support, absolutely needs to benefit from sharing the resources and advancements made in other, more recognisable areas of disability, such as Autism, Down Syndrome and learning disabilities. A mini school would enable the parents of disabled children and their children a way to work collectively, share their individual and collective experience, and benefit from the understanding and recognition that comes from working together.

Thank you,
B's Mom

Friday, January 7, 2011

It's Always Hard: How I Spent My Day

 Letters out:
Dear Ms. R**,

I have a twelve year old daughter who is disabled. She had a stroke before birth, has poorly controlled epilepsy, emotional problems, physical problems, hearing and sight problems, and ADD. She has a very unique and complex profile.

For two years, I have been asking her school (and, by extension, the *SB) to provide me with recommendations for high school programs. My daughter cannot go to a regular program, she will be hard to place. I want to be able to go around with her to see the programs and make the best match possible. For two years the school administrators have, I have come to realise, "handled" me, for lack of a better term. They have agreed to do this while stalling and stalling.

Now I've been told that there is a program at B** Secondary they are trying to put her in. It is the only one they've mentioned, but I am not allowed to go see it, or know anything about it. I've been told the offer will be made in March, and then I can see it and ask questions. But if I don't feel it's right, I will have no other options in March, as this will leave me no time to see or apply to other programs. My daughter is routinely turned down from programs, including *SB programs. The B** program might very well be a great match for her, but unless I can see it, and take her down to show her and meet people, how do I know? I am the expert on her and what her needs are. The program may not be a fit for very good reasons that have nothing to do with the quality of the program.

I have learned through a therapist at Mental Health and the teacher at the Hospital who works on placements that I am not alone in encountering this issue. Apparently, the *SB has an unspoken policy to prevent "parental shopping" of disability programs. My issues regarding this are multi-fold:

1. It goes against the School Act, which states a parent's right to:
     "7 (2) A parent of a student of school age attending a school may, and at the request of a
teacher or principal, vice principal or director of instruction must, consult with the teacher,
principal, vice principal, or director of instruction with respect to the student’s educational

2. It goes against the stated promise to encourage a parent to collaborate with all involved stated here: (website given) 10 section B.4 (Parents)
and the promised environment of co-operation regarding planning promised on page 22, where it talks about the school based team.

3. If she were a "regular" child with a special interest, or a gifted child, I would only need to go here: (website given) to see all the programs on offer by the *SB and how to register for them.

My daughter is very ill right now. Her seizures for the last year have been really out of control, and now she will be assessed for brain surgery. I have precious little time and energy to challenge the school board, but I will. Not just for my daughter, either. This is a problem faced by many parents of disabled children, and it needs to change. We have as much right to make informed choice about our child's education as anyone else. When a disabled child is preparing to transition between elementary school and high school, there needs to be a team meeting, with all concerned parties to discuss options and to make sure everyone knows their rights and responsibilities. Parents need to be fully consulted with regarding their children's future educational path.

I have talked to the Vice Principal, and was turned down for a meeting with the person who is supposedly lobbying for my child (I've never met her) and the Principal. I am willing to seek whatever manner of remedy, inside or outside of the *SB realm, that I need to get my daughter's needs met. I do not want to, I simply want equal treatment and to have a non-adversarial relationship with the *SB.

Some direction would be great. I don't just want this changed for my daughter. It needs to change for everyone.

Thank you,
B's Mom
 Letters out: Request to know who I'd been dealing with from an advocate:

Well, last year and the year before the principal was Mr. (Principal) (I will check Monday for his full name).  I tried repeatedly to get invited to a School Team meeting, and was finally invited to one at the end of 2009, but it was cancelled at the last minute and I couldn't make the rescheduled meeting because I was in University. I was not invited to another one, even though I have talked about it regularly since my daughter started there in grade five.

This year we had a change and have a VP at the School (M** Elementary) with a principal who works at B** Elementary. High School placement was one of the first topics I brought up at with Ms. VP, and we had more than one discussion about it. I was very clear that I wanted to know my options and be able to see the programs. B's (my daughter) previous counsellor at Mental Health had recommended H** House, but Ms. VP said it was a horrible place. Why, I am not sure. I was disheartened, because it was the only suggestion I'd gotten. It doesn't matter now, they've turned her down. Everyone turns her down. That's why I am so very worried.

Ms. VP assured me this last fall that she would find recommendations and we would go together and see them, but the recommendations were not forthcoming. I talked to B's classroom assistant, and she in turn talked to  the social worker at the school. He promised to help, but every time I tried to talk to him he'd say that we'd talk later. And then his book was missing. And then he had to get it back. This went on for weeks.

Just before Christmas, Ms. VP told me about the program at B**, but she had very little information. A couple of days later I wrote and asked to see the program, and you can see the response below. I was very upset and talked to B's Therapist. I was also recently interviewed for the At Home Program, and I talked to the women who interviewed us, and she put me in contact with the teacher at the Hospital, where my daughter has had many assessments done. Both B's Therapist and the Hospital people were dismayed, but not surprised. Apparently, it happens a lot.

I feel that Ms. VP was honest at the beginning of the year about helping me, but that perhaps she found herself up against the same wall. Perhaps I am mistaken, but the whole thing feels like people trying to get out of between a rock and a hard place, and not being able to tell me about the cause of their 180 degree turns.

This year was very hard. My daughter is very sick, I became PAC chair, and we had to hit the ground running to fight the school closures. I am in the school everyday, talking to her teachers and workers. I attend every IEP meeting. The services from the school board have been virtually non existent. They have cut back the workers in her class to 1.5 for 8 kids. My daughter alone has two designations and is supposed to get full time help, but she's only going part time so I think they're using that as a justification to cut services. She is supposed to see speech and occupational therapists, but has not seen a speech therapist in eight years and only this year finally saw an occupational therapist. I am fairly inundated with specialists and doctors for her, so sometimes I am busy working on certain areas and other areas lapse. But I am tired of having to always fight for services, to always have a million miles of extra red tape, and I can only imagine how hard it must be for others with language problems or who simply don't know how to navigate the system. 

It makes me angry to think of other parents having to go through this. Our school is small, and has a student body that is 64% First Nations, 26% designated Special Needs, and has a high percentage of ESL students. I want to see a better procedure when I leave, because these students already experience enough challenges. Their parents need more ways to be involved, not less.

 I have also shared this information with J** B**, who is on the board of trustees, with the hope that that also will help affect change.

Thank you for your time, I will email you again next week.


Letters in: To me from the person who runs the special needs education programming at the school board.

This does not sound right at all – let’s meet to review the details. I am available on Wednesday morning at 9:30 am if you are able to make it – otherwise, I’ll send you additional dates. For now – what is your daughter’s name and the school she currently attends? Have you had any connection with a case manager?
Many thanks & see you soon.
Ms. R**.


So, in the end, with help and support of some great people that I don't know, I FINALLY got some movement. I am curious to see how the VP will be Monday. I hope she understands that it was not personal. And I hope she understands it was very personal.