Fall has been busy. Am I ever not busy? I don't even remember anymore.
B has had some problems at school this year. She has two new classmates in particular that have proven difficult for her. One has FASD and the other has Autism. They have even poorer social skills than B, and so there has occurred a lot of conflict. I went to the school a month ago and had a good talk with her teacher and workers. We developed a good plan to help her cope, but still she told them the other day that she would hang herself when she got home. That necessitated a meeting with the school counsellor, who phoned me to talk about it.
Unfortunately, B just says stuff like that, has for years. I have talked to her, she sees her counsellor and psyche regularly, and we don't think it's a real threat. Still, the school has to exercise caution, I understand.
She felt excited at having her picture in the newspaper on Wednesday. She really wants people to know and understand about her stroke. In the afternoon on Wednesday we had to take the skytrain, and she said to me, "I see lots of ads for donations and children who need help, but not for kids with strokes." She didn't say this with anger, she just observed this.
She still has behaviour issues, especially with the conflict at school, but I just take it as it comes. Each time my Mandt training helps a little bit more.
We're getting close on the bike fund, hooray, and I am so looking forward to when I can order it, and we can ride it around. It will be such a fun thing to do together. And that kid needs the exercise, especially with her recent marshmallow habit.
Showing posts with label School. Show all posts
Showing posts with label School. Show all posts
Thursday, November 22, 2012
Thursday, May 31, 2012
New Puppy and IEP
Phew, the last few weeks have been hectic. We got a new puppy, just three months old, and he is a handful. Such a cutie, though, and he will end up being a very big dog. He's a Shepherd/Retriever mix, and we named him Crowbar. I'll post pictures later. B loves him.
Sparky tolerates him, but he lets the puppy sleep next to him, and he's pretty patient with him. The puppy adores Sparky.
In other news, we finally had an IEP at B's school. That is an Individualized Education Plan, and we should have two a year, but with the teacher's job action, we had to wait. B is doing well in class, even with her behaviour problems. Her teacher said that she is the only kid in class who gets their jokes.
Her counsellor, Behaviour Consultant, and Social Worker all went to the meeting. We will keep working on her social skills, peer interaction, and Life Skills development. She has had some hard times dealing with the kids in her class, because her social skills are very undeveloped.
We put her in a Life Skills class on Saturdays, run by CLBC, and for the summer I will enroll her in another Life Skills program, one that I hope she will continue in the fall.
Her neurologist is retiring. We have had him as her doctor for many years, and I quite like him. We don't have a new one yet.
Sparky tolerates him, but he lets the puppy sleep next to him, and he's pretty patient with him. The puppy adores Sparky.
In other news, we finally had an IEP at B's school. That is an Individualized Education Plan, and we should have two a year, but with the teacher's job action, we had to wait. B is doing well in class, even with her behaviour problems. Her teacher said that she is the only kid in class who gets their jokes.
Her counsellor, Behaviour Consultant, and Social Worker all went to the meeting. We will keep working on her social skills, peer interaction, and Life Skills development. She has had some hard times dealing with the kids in her class, because her social skills are very undeveloped.
We put her in a Life Skills class on Saturdays, run by CLBC, and for the summer I will enroll her in another Life Skills program, one that I hope she will continue in the fall.
Her neurologist is retiring. We have had him as her doctor for many years, and I quite like him. We don't have a new one yet.
Tuesday, March 27, 2012
Back To School
B was aggressive and violent with me last night. I spent the whole time thinking, "Please, do not step on my broken toe. Please," and she didn't, although there was lots of hair pulling, hitting, and kicking. I hid some Ativan in a piece of chocolate bar, and she eventually calmed down and went to sleep.
When she woke up, she went right back at it. She went after me, went after Andrew, and even hit Grandma when she came over. We tried to use the Mandt training that I've learned so far, but got stuck in old patterns of dealing with her, and then had to back off completely to regroup and let her reach baseline again. The new training will take practice, and a more tailored plan that's specific to her needs. She missed her bus, and only the promise of a new pig pencil case I got a few days ago got her finally dressed. I had to hobble off on my crutches in a cab to get her to school. We certainly can't afford that every day. If I could've walked, I would've gotten her to walk the whole way, to calm her down, but also to show her what a convenience the bus is.
She cannot handle me being sick or injured, and the almost three weeks off school, because of the teachers strike and spring break, will make the next week or two extra challenging. She has such a hard time transitioning.
She had a great Spring Break, though, with lots of fun stuff, and I've put her in a program run by Community Living on Saturdays. We'll see how that goes, and then I'll consider some after school programs.
When she woke up, she went right back at it. She went after me, went after Andrew, and even hit Grandma when she came over. We tried to use the Mandt training that I've learned so far, but got stuck in old patterns of dealing with her, and then had to back off completely to regroup and let her reach baseline again. The new training will take practice, and a more tailored plan that's specific to her needs. She missed her bus, and only the promise of a new pig pencil case I got a few days ago got her finally dressed. I had to hobble off on my crutches in a cab to get her to school. We certainly can't afford that every day. If I could've walked, I would've gotten her to walk the whole way, to calm her down, but also to show her what a convenience the bus is.
She cannot handle me being sick or injured, and the almost three weeks off school, because of the teachers strike and spring break, will make the next week or two extra challenging. She has such a hard time transitioning.
She had a great Spring Break, though, with lots of fun stuff, and I've put her in a program run by Community Living on Saturdays. We'll see how that goes, and then I'll consider some after school programs.
Tuesday, February 21, 2012
Update
It's been awhile since I posted anything. I guess things have gotten very intense and I needed to back away from it all for a while, but I've had people write and ask for an update, and there is a lot to share.
In the fall, we finally found B a good high school Life Skills program. The program is a good fit, and for the first time in her whole school experience, B does not feel set apart from her classmates, as they all have developmental and health concerns like hers. She's made friends, and has a boyfriend, which is very sweet. She kissed him, and I think they hold hands at lunch. She also now has a BFF, who phones her at home and demands that I get her a puppy as well. It makes me happy to see her chatting on the phone with a friend.
She continues to have anger and behavioural issues, which her neurologist thinks is related to her seizure disorder. We have a behavioural consultant, but last week she beat me up twice, and I admit that it can be hard for me to read about my friends and their kids, and how they are excelling at school and socially, when last week it was all I could do to physically wrestle B on to the bus, in her pajamas and covered in hot chocolate. Standing on the street and holding her while she punched me, people stopping to stare, I felt horrible and sad for her. And me. The behaviour consultant is nice, but her recommendations so far are mostly things we already do, but still, I have to try.
B's seizures are back, although her seizure patterns keep changing. We've exhausted all the medications, save one. That med is Keppra, and it is so expensive that we need special government permission to get it. A friend from the states said it cost more than her mortgage each month. But I can't give it to her, because it can increase her behaviour issues, and of the two, the behaviour issues can cause the most problems for her.
In lieu of medication options, I instead decided to have her assessed for surgery. We spent a week in the hospital, with B hooked up to an EEG, tied to the wall by a fifteen foot cord, lights on 24 hours a day, and sleep depriving her. She didn't have one seizure. She had discharges, but it was not enough, so we need to do it again. She did have a new MRI, which showed a huge scar in her right occipital and parietal lobe, and that the right side of her brain is significantly smaller than her left. Still, she is amazing in how much she has compensated, and is a walking testimony to the plasticity of a baby's brain.
As for me, I have been trying to maintain a good balance between caring for her and caring for myself. I have kept up a consistent Paleo diet, exercised regularly, and am nearing a 100lb weight loss. I feel physically good. I walk, ride a bike, and weight lift regularly. I find this is important, because I can get so lost in everything I need to do for B. Andrew is better at taking time for himself. It is a skill I need to work at.
I still would like a decent and flexible job. Not working, beyond my own writing, and not contributing financially to our household is very hard on me. But I need a job that allows for appointments, and random time off, and that is not easy to find. I do what I can.
I will get back to posting more regularly, and keep you up to date on her treatments.My next goal is trying to get funding to buy this bike , because Lordy, I cannot take the heart attack of her trying to ride down the street, with her eyesight and hearing issues, a seizure happening at any random time.
Oh, yeah, she got a hearing aid.
In the fall, we finally found B a good high school Life Skills program. The program is a good fit, and for the first time in her whole school experience, B does not feel set apart from her classmates, as they all have developmental and health concerns like hers. She's made friends, and has a boyfriend, which is very sweet. She kissed him, and I think they hold hands at lunch. She also now has a BFF, who phones her at home and demands that I get her a puppy as well. It makes me happy to see her chatting on the phone with a friend.
She continues to have anger and behavioural issues, which her neurologist thinks is related to her seizure disorder. We have a behavioural consultant, but last week she beat me up twice, and I admit that it can be hard for me to read about my friends and their kids, and how they are excelling at school and socially, when last week it was all I could do to physically wrestle B on to the bus, in her pajamas and covered in hot chocolate. Standing on the street and holding her while she punched me, people stopping to stare, I felt horrible and sad for her. And me. The behaviour consultant is nice, but her recommendations so far are mostly things we already do, but still, I have to try.
B's seizures are back, although her seizure patterns keep changing. We've exhausted all the medications, save one. That med is Keppra, and it is so expensive that we need special government permission to get it. A friend from the states said it cost more than her mortgage each month. But I can't give it to her, because it can increase her behaviour issues, and of the two, the behaviour issues can cause the most problems for her.
In lieu of medication options, I instead decided to have her assessed for surgery. We spent a week in the hospital, with B hooked up to an EEG, tied to the wall by a fifteen foot cord, lights on 24 hours a day, and sleep depriving her. She didn't have one seizure. She had discharges, but it was not enough, so we need to do it again. She did have a new MRI, which showed a huge scar in her right occipital and parietal lobe, and that the right side of her brain is significantly smaller than her left. Still, she is amazing in how much she has compensated, and is a walking testimony to the plasticity of a baby's brain.
As for me, I have been trying to maintain a good balance between caring for her and caring for myself. I have kept up a consistent Paleo diet, exercised regularly, and am nearing a 100lb weight loss. I feel physically good. I walk, ride a bike, and weight lift regularly. I find this is important, because I can get so lost in everything I need to do for B. Andrew is better at taking time for himself. It is a skill I need to work at.
I still would like a decent and flexible job. Not working, beyond my own writing, and not contributing financially to our household is very hard on me. But I need a job that allows for appointments, and random time off, and that is not easy to find. I do what I can.
I will get back to posting more regularly, and keep you up to date on her treatments.My next goal is trying to get funding to buy this bike , because Lordy, I cannot take the heart attack of her trying to ride down the street, with her eyesight and hearing issues, a seizure happening at any random time.
Oh, yeah, she got a hearing aid.
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.
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.
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.
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
Lately
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.
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.
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.
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.
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
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
program."
2. It goes against the stated promise to encourage a parent to collaborate with all involved stated here: (website given) ........page 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.
C**:
_______________________________________________________________________________
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
program."
2. It goes against the stated promise to encourage a parent to collaborate with all involved stated here: (website given) ........page 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.
C**:
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**.
Addendum:
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.
Wednesday, November 10, 2010
Anxiety
B's anxiety level has been through the roof for the last week, accompanying her surge in seizures. She has taken to begging me not to leave her at school in the morning and complaining bitterly about school when she gets home. Also, she's had a few bouts of temper tantrums at home, which is not like her, and today she felt so bad, the worker had her call me and I went and picked her up early.
I talked to her worker today about how to help her more, and I continue to urge a dismissal of the curriculum. I am more worried about her mental state and feelings about school than I am about her attending to the work.
On Tuesday of next week, I am going to go in and observe the classroom, to see If I can help them figure out what to do. I am in all the time, I talk to them every day about her, but I can't figure out exactly what is making her so upset right now. She keeps saying they rush her, but I think that's one of the few things she can actually identify. I think it's a combination of the seizures having a really bad effect on her memory, so she's having an extra hard time figuring out what is going on, and the trouble I often see the teachers and support have in giving up the idea of the curriculum. I can understand the difficulty. It's a huge part of their job.
I admit that I am having a bit of an inner conflict right now. Part of me wants to say, "Screw it," and keep her home until the meds kick in, or we have to switch to new meds. I mean, I am not a mother that often forces her to do stuff. I am very lenient and accommodating, because I think her stress level is high, she has a lot to deal with, and I want her to have all the down time she needs just to be relaxed and not feel at odds with anything. And part of me just wants her to go to school because I need space and time. She's an intense child to parent. She needs constant interaction and supervision. She's high maintenance. And I also am worried that if I let her completely part with school, it will be even harder to get her back, and she needs the extra socialising and independence from me that school allows. Or should allow. Quite frankly, I am so angry at the cutbacks in support that I am seriously considering taking her to panhandle for education money outside of Campbell's and MacDiarmid's offices.
She, of course, is not conflicted in the least. That child wants me, and pretty much only me twenty-five hours a day. This has just grown in intensity as her seizures have gotten worse over the years. Mom helps everything make sense. Mom understands how she feels and can explain it to others. And while I am far from perfect, I get frustrated and tired and snippy like any Mom, I guess B is better at focusing on my good qualities.
I wish there was an easy answer. Hell, I wish there were ANY answers, ever, anywhere, by anyone. I wish we could give her meds for anxiety, which is much easier to treat with meds than depression or other disorders, but I am just not going to give her more meds.
I talked to her worker today about how to help her more, and I continue to urge a dismissal of the curriculum. I am more worried about her mental state and feelings about school than I am about her attending to the work.
On Tuesday of next week, I am going to go in and observe the classroom, to see If I can help them figure out what to do. I am in all the time, I talk to them every day about her, but I can't figure out exactly what is making her so upset right now. She keeps saying they rush her, but I think that's one of the few things she can actually identify. I think it's a combination of the seizures having a really bad effect on her memory, so she's having an extra hard time figuring out what is going on, and the trouble I often see the teachers and support have in giving up the idea of the curriculum. I can understand the difficulty. It's a huge part of their job.
I admit that I am having a bit of an inner conflict right now. Part of me wants to say, "Screw it," and keep her home until the meds kick in, or we have to switch to new meds. I mean, I am not a mother that often forces her to do stuff. I am very lenient and accommodating, because I think her stress level is high, she has a lot to deal with, and I want her to have all the down time she needs just to be relaxed and not feel at odds with anything. And part of me just wants her to go to school because I need space and time. She's an intense child to parent. She needs constant interaction and supervision. She's high maintenance. And I also am worried that if I let her completely part with school, it will be even harder to get her back, and she needs the extra socialising and independence from me that school allows. Or should allow. Quite frankly, I am so angry at the cutbacks in support that I am seriously considering taking her to panhandle for education money outside of Campbell's and MacDiarmid's offices.
She, of course, is not conflicted in the least. That child wants me, and pretty much only me twenty-five hours a day. This has just grown in intensity as her seizures have gotten worse over the years. Mom helps everything make sense. Mom understands how she feels and can explain it to others. And while I am far from perfect, I get frustrated and tired and snippy like any Mom, I guess B is better at focusing on my good qualities.
I wish there was an easy answer. Hell, I wish there were ANY answers, ever, anywhere, by anyone. I wish we could give her meds for anxiety, which is much easier to treat with meds than depression or other disorders, but I am just not going to give her more meds.
Sunday, November 7, 2010
The Last Month
Well, wasn't October fun! Let's see, we started with me sick and B having an allergic reaction to her meds. We quickly slid into me having a horrible throat infection and losing my voice for three weeks. Then, just as that seemed to be clearing up, we get lice, and now I have another infection! A horribly painful one. Third one in two months.
On top of that, her school support dropped to unacceptable levels, and I have been trying to help save her school from closing, along with being the PAC chair.
You know what I would like?A terrifically boring November. A total snoozefest. :)
B has been very clingy lately. She is having so many seizures, because one of her meds is dropping faster than the new med is coming up. This is leaving her vulnerable to seizures.
Because of the drop in support, the increase in seizures worries me. Safety is very important, and for her having support is mainly about safety. However, she needs the one-on-one because without it, social interactions become so difficult for her that she simply withdraws. That is not good for her.
An Occupational Therapist saw her at school and agreed with my request for speech recognition on her new computer. Frankly, if writing by hand is too complex for her, I doubt she will ever master touch typing. That requires spatial skills, memorisation, muscle memory and concentration. All areas of difficulty for her.
I think speech recognition will help her use the computer more effectively.
The good news is that her new haircut, which I gave her in a fit of lice fuelled panic, is absolutely adorable. I'll post pictures soon.
On top of that, her school support dropped to unacceptable levels, and I have been trying to help save her school from closing, along with being the PAC chair.
You know what I would like?A terrifically boring November. A total snoozefest. :)
B has been very clingy lately. She is having so many seizures, because one of her meds is dropping faster than the new med is coming up. This is leaving her vulnerable to seizures.
Because of the drop in support, the increase in seizures worries me. Safety is very important, and for her having support is mainly about safety. However, she needs the one-on-one because without it, social interactions become so difficult for her that she simply withdraws. That is not good for her.
An Occupational Therapist saw her at school and agreed with my request for speech recognition on her new computer. Frankly, if writing by hand is too complex for her, I doubt she will ever master touch typing. That requires spatial skills, memorisation, muscle memory and concentration. All areas of difficulty for her.
I think speech recognition will help her use the computer more effectively.
The good news is that her new haircut, which I gave her in a fit of lice fuelled panic, is absolutely adorable. I'll post pictures soon.
Thursday, November 4, 2010
Support For B
On Tuesday B's teacher informed me that the support for B's classroom has been brought down to 1.5 support workers. That's one full time and one half time. There's eight special needs kids in her class.
B has always qualified for full time help and only ever received half time, and had to share that. But to have to share a worker with eight kids, that is not even remotely acceptable. That means she will recieve no help for five of her six classes. WHY THE HELL WOULD I EVEN SEND HER TO SCHOOL??
I have some phoning to do.
B has always qualified for full time help and only ever received half time, and had to share that. But to have to share a worker with eight kids, that is not even remotely acceptable. That means she will recieve no help for five of her six classes. WHY THE HELL WOULD I EVEN SEND HER TO SCHOOL??
I have some phoning to do.
Friday, September 24, 2010
One Friday Afternoon...
I had planned another post for today. Indeed, I already had it written, however, something happened today that I think is of more importance to talk about, and since it occupied most of my afternoon and I am still a bit het up about it, I'm going to write about that instead.
Today I went to pick B up from school, and one of the class aides said that B had said something weird at school, so they phoned her Mental Health office and reported it. She said none of the people felt angry about it, and they had just followed the direction of the vice-principal about it. They understood that B had just been joking around and that they knew B does not have violence issues, so I should not consider it a big deal. The thing that B said, jokingly to her pregnant teacher, was:
"Why don't you go home and eat your baby?"
Admittedly, it's a weird thing to say. But B gets it from us, it's something Andrew says jokingly. (He now will stop saying it). "Gonna eat da, baby!" about a friend's kid that he watches. I used to say it to B all the time, along with chasing B around going, "I'm going to nummy your tummy/ribs/bum!" as she ran around giggling and laughing. Really, is that so incredibly odd? The numming never happens, just the chasing and silliness.
But it upset me that they phoned someone about it. It isn't something she should say at school, but I would've thought addressing that with her and then telling me about it would suffice. Also, I didn't like that they told me in front of B, remembering that her anxiety started with a teacher who would list all her mostly minor complaints about B in front of her. It isn't good for B.
I brought B home after school, but then realised that I needed to address it right away, so I parked her with Andrew, who had a movie going, and went back to the school. First, I got all the workers and her teacher together and had a talk with them about:
a) B is weird. She says weird things. She's weird because Andrew and I are weird. We're weird people. In our house, weirdness is a virtue, and if they phoned mental health every time B said something weird, well, they might as well move the class there.
b) B says inappropriate things, all the time, because she doesn't understand social situations. I definitely expect them to tell her when she says something inappropriate, but do they phone when any other kid says something weird?
c) The answer is yes, they do. News to me.
d) That no matter their good intentions or policy, and I accept that they did have good intentions, it doesn't feel good to hear, "We called the _______ about your child today," it felt nerve wracking and I felt unsettled about it.
e) Let's set up a better system. A new counsellor will take over B's case soon, because the old counsellor moved to Newfoundland in August. When he gets set up, I will ensure the school has access, so keep a log instead. Because I don't want to worry every day that the school might phone the mental health unit about my weird kid.
f) Since her birth, she has seen doctors, speech/occupational/physio therapists, psychiatrists, specialists, psychologists, and for the last year and a half has had regular therapy appointments, by herself, with confidentiality even from me. If she had any violent or aggressive tendencies or had experienced any abuse from me or anyone else, this would have already become apparent to somebody. There exists no secrets about my parenting of B, she has had more investigative intervention than any kid I know.
g) Did I mention she is weird? Because I'm weird? I don't want to "normal" her. I adore her odd sense of humour. It matches mine.
I think they listened to me and they agreed to my suggestions, and then I went and told the vice-principal. The vp said she had them report it to ensure B got services because she had worried that B didn't have them now and had been put on a wait list. So I explained that no, the old therapist had just moved. B will still have therapy.
Anyways, hopefully I've altered the situation so that I don't have to worry and they feel they can address concerns with me and the counsellor, and that I don't ever have to experience that again. I might add more later.
Today I went to pick B up from school, and one of the class aides said that B had said something weird at school, so they phoned her Mental Health office and reported it. She said none of the people felt angry about it, and they had just followed the direction of the vice-principal about it. They understood that B had just been joking around and that they knew B does not have violence issues, so I should not consider it a big deal. The thing that B said, jokingly to her pregnant teacher, was:
"Why don't you go home and eat your baby?"
Admittedly, it's a weird thing to say. But B gets it from us, it's something Andrew says jokingly. (He now will stop saying it). "Gonna eat da, baby!" about a friend's kid that he watches. I used to say it to B all the time, along with chasing B around going, "I'm going to nummy your tummy/ribs/bum!" as she ran around giggling and laughing. Really, is that so incredibly odd? The numming never happens, just the chasing and silliness.
But it upset me that they phoned someone about it. It isn't something she should say at school, but I would've thought addressing that with her and then telling me about it would suffice. Also, I didn't like that they told me in front of B, remembering that her anxiety started with a teacher who would list all her mostly minor complaints about B in front of her. It isn't good for B.
I brought B home after school, but then realised that I needed to address it right away, so I parked her with Andrew, who had a movie going, and went back to the school. First, I got all the workers and her teacher together and had a talk with them about:
a) B is weird. She says weird things. She's weird because Andrew and I are weird. We're weird people. In our house, weirdness is a virtue, and if they phoned mental health every time B said something weird, well, they might as well move the class there.
b) B says inappropriate things, all the time, because she doesn't understand social situations. I definitely expect them to tell her when she says something inappropriate, but do they phone when any other kid says something weird?
c) The answer is yes, they do. News to me.
d) That no matter their good intentions or policy, and I accept that they did have good intentions, it doesn't feel good to hear, "We called the _______ about your child today," it felt nerve wracking and I felt unsettled about it.
e) Let's set up a better system. A new counsellor will take over B's case soon, because the old counsellor moved to Newfoundland in August. When he gets set up, I will ensure the school has access, so keep a log instead. Because I don't want to worry every day that the school might phone the mental health unit about my weird kid.
f) Since her birth, she has seen doctors, speech/occupational/physio therapists, psychiatrists, specialists, psychologists, and for the last year and a half has had regular therapy appointments, by herself, with confidentiality even from me. If she had any violent or aggressive tendencies or had experienced any abuse from me or anyone else, this would have already become apparent to somebody. There exists no secrets about my parenting of B, she has had more investigative intervention than any kid I know.
g) Did I mention she is weird? Because I'm weird? I don't want to "normal" her. I adore her odd sense of humour. It matches mine.
I think they listened to me and they agreed to my suggestions, and then I went and told the vice-principal. The vp said she had them report it to ensure B got services because she had worried that B didn't have them now and had been put on a wait list. So I explained that no, the old therapist had just moved. B will still have therapy.
Anyways, hopefully I've altered the situation so that I don't have to worry and they feel they can address concerns with me and the counsellor, and that I don't ever have to experience that again. I might add more later.
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.
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.
Wednesday, September 1, 2010
How B Developed Anxiety
B did not always have anxiety. As a matter of fact, she was pretty go with the flow as a baby. Without formally deciding to when she was born, I just naturally practiced what is generally called attachment parenting. I picked B up every time she cried. I carried her next to my skin. We did, and still do, sleep naked together, ensuring tons of skin on skin contact. I breastfed on demand, anywhere, and cannot tell you the number of appointments I went through with her as a baby with one boob having been popped out of my shirt, and me completely not noticing because it is how I spent most of my time. I certainly was not a perfect mom, I had and have many faults, but these things I did right, as did most of the moms I had and have as friends.
When B was 2.5 I put her in daycare. She was enthusiastic, and had no separation anxiety at all. (She also toilet trained immediately upon entering daycare with no prompting, although I came to realise that this probably happened so that she could gain the freedom to pee on trees. That was a real problem for a while, keeping her from squatting on every block.) She loved daycare, and was so very excited to start school that even though I could've held her back another year, her birthday being December 31st, I just didn't have the heart to.
The anxiety didn't start until grade three. In grade three she had a teacher that got it into her head that she could punish the forgetfulness and ADD out of B. She and B's aide would put B out in the hallway for not doing homework or listening. Also, when I came at the end of every school day, the aide or the teacher would have a laundry list of very minor complaints about her behaviour that they would launch into, in front of B. B would sit there and feel absolute shame, even though many of the complaints were about things out of her control or were minor things that kids do, that the other kids did, only B's mom came in every day, so she got to hear them.
Now, it must be clarified that B is not, and never has been, a discipline problem. She is not rambunctious, she isn't disruptive. Her problems were about being able to focus and withdrawing into her own world, not about being in any way aggressive or petulant or rude. She can't follow directions because she can't remember them, because she can't negotiate the classroom, because she didn't hear them, because she is unable to ask for help, etc..
All these are reasons why discipline does not work for B. Sure, I can send her to her room, but if she doesn't remember why she's in there, what is the discipline worth? And if the problems are caused by an organic brain injury, that she cannot control, is strictness and shaming going to somehow change her memory and attention problems?
No.
At first, to my regret, I allowed this teacher this leeway, mistakenly assuming that she had some experience that I lacked. It was the biggest mistake ever. Within a few weeks, B had developed massive anxiety about going to school. She was angry. And who could blame her? She started hitting me, screaming, slamming doors, and even hit her aide at school, which the aide and the teacher thought was somehow good and demonstrated trust! To me now, this seems so completely unbelievable.
I forced them to stop, stop disciplining her, stop shaming her. I talked with the resource teacher, the principal, the social worker. And they did stop, although my relationship with the teacher became very strained. I increased my presence at the school, and B calmed down, but the anxiety remained. She doesn't remember any of it, but the anxiety remained.
At the end of the school year that year, an EEG showed that B was having sub clinical seizure discharges at the rate of one per second. I was devastated. One per second. That means B's reality is something like sitting and flicking through the channels constantly on your TV. There is no continuity. So many times a day her channel is changed and she has no idea what is happening on the show. And I allowed that teacher to make her feel bad about that. How horrible for her.
When B was 2.5 I put her in daycare. She was enthusiastic, and had no separation anxiety at all. (She also toilet trained immediately upon entering daycare with no prompting, although I came to realise that this probably happened so that she could gain the freedom to pee on trees. That was a real problem for a while, keeping her from squatting on every block.) She loved daycare, and was so very excited to start school that even though I could've held her back another year, her birthday being December 31st, I just didn't have the heart to.
The anxiety didn't start until grade three. In grade three she had a teacher that got it into her head that she could punish the forgetfulness and ADD out of B. She and B's aide would put B out in the hallway for not doing homework or listening. Also, when I came at the end of every school day, the aide or the teacher would have a laundry list of very minor complaints about her behaviour that they would launch into, in front of B. B would sit there and feel absolute shame, even though many of the complaints were about things out of her control or were minor things that kids do, that the other kids did, only B's mom came in every day, so she got to hear them.
Now, it must be clarified that B is not, and never has been, a discipline problem. She is not rambunctious, she isn't disruptive. Her problems were about being able to focus and withdrawing into her own world, not about being in any way aggressive or petulant or rude. She can't follow directions because she can't remember them, because she can't negotiate the classroom, because she didn't hear them, because she is unable to ask for help, etc..
All these are reasons why discipline does not work for B. Sure, I can send her to her room, but if she doesn't remember why she's in there, what is the discipline worth? And if the problems are caused by an organic brain injury, that she cannot control, is strictness and shaming going to somehow change her memory and attention problems?
No.
At first, to my regret, I allowed this teacher this leeway, mistakenly assuming that she had some experience that I lacked. It was the biggest mistake ever. Within a few weeks, B had developed massive anxiety about going to school. She was angry. And who could blame her? She started hitting me, screaming, slamming doors, and even hit her aide at school, which the aide and the teacher thought was somehow good and demonstrated trust! To me now, this seems so completely unbelievable.
I forced them to stop, stop disciplining her, stop shaming her. I talked with the resource teacher, the principal, the social worker. And they did stop, although my relationship with the teacher became very strained. I increased my presence at the school, and B calmed down, but the anxiety remained. She doesn't remember any of it, but the anxiety remained.
At the end of the school year that year, an EEG showed that B was having sub clinical seizure discharges at the rate of one per second. I was devastated. One per second. That means B's reality is something like sitting and flicking through the channels constantly on your TV. There is no continuity. So many times a day her channel is changed and she has no idea what is happening on the show. And I allowed that teacher to make her feel bad about that. How horrible for her.
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