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.