Hi this is B. Thank you to everyone who has and has not donated to pay for my trike but instead for trike equiptment, i love it and so does Crobar. He attempts to sit on the seats whenever we take him on it but he does not know how he is supposed to sit on it without falling down. We have agreed to stop taking him however because he is choking himself on it since we like going really fast on it and he can't keep up with the trike. But mom trys to limit our bike time for the dog and there is no limit to my energy on that trike.
Mom says: I wanted to post a video of her on the trike, but I haven't got one yet. B wrote this by herself. :) (Well, not this last bit.) Please feel free to repost this.
Showing posts with label Who B Is. Show all posts
Showing posts with label Who B Is. Show all posts
Tuesday, July 23, 2013
Monday, March 12, 2012
My Kid
B has found an old cell phone of mine. She brings it out with her and has imaginary harassment calls from creditors in her "Dreamworld" of dragons. She owes a lot of money for her dragon nursery, And there's a Mister Tibiscus that is a real pain in her side. She doesn't like the dragon bankers.
Also, she's devious. :) Today she said:
B: What if we didn't have the nice grandma, and we had a horrible, mean one?
Me: I don't know, what would we do?
B: I'd give her a potion.
Me: To make her nicer?
B: No, to get rid of her. Bwahahaha.
Also, she's devious. :) Today she said:
B: What if we didn't have the nice grandma, and we had a horrible, mean one?
Me: I don't know, what would we do?
B: I'd give her a potion.
Me: To make her nicer?
B: No, to get rid of her. Bwahahaha.
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.
Monday, March 14, 2011
Conversations With B
B: How many x's and o's do I have in me?
Me: What?
B: You know, chromsomes?
Me: Chromosomes? Uh, I'm not sure off the top of my head, I'll have to look it up.
B: I have two, two o's, because I'm a girl.
Me: No, you have two x chromosomes. If you were a boy you'd have an x and a y.
B: I pretended to be a boy once.
Me: Oh, yeah, how'd that go?
B: It was weird.
Me: How so?
B: Well, I forgot to lift the toilet seat, but it doesn't matter, because I don't have a penis!
Me: What?
B: You know, chromsomes?
Me: Chromosomes? Uh, I'm not sure off the top of my head, I'll have to look it up.
B: I have two, two o's, because I'm a girl.
Me: No, you have two x chromosomes. If you were a boy you'd have an x and a y.
B: I pretended to be a boy once.
Me: Oh, yeah, how'd that go?
B: It was weird.
Me: How so?
B: Well, I forgot to lift the toilet seat, but it doesn't matter, because I don't have a penis!
Wednesday, February 23, 2011
Identity
A little while ago, B told me that she was the only invisible kid in her class. By this, she actually means, "invisible disability". She's not. Half the kids have a disability that is recognised, and likely there are a couple more that have a disability but no diagnosis. But she is the only kid in her class that constantly has to be with a worker, she can't even walk down the stairs by herself, and she is the only one that barely attends class, has a parent pick her up and drop her off everyday, and has a special computer. I'm sure it makes her feel very conspicuous.
Even if I wasn't the type of mom who feels that she has to know all about her own health, so she'll learn to advocate for herself, or that thinks that she gets to have input into her care, or thinks that personal experiences of otherness need to be freely addressed, there is no way she would not understand that she is different than other kids. She has doctors and medication and different rules at home and at school. She is disabled, and she is very aware of that.
But I don't like that if you ask B who she is, one of the first things, if not the first thing, she will say is disabled. She is so many other things. I am not ashamed of her being disabled, and I don't want her to be either, but I don't want her identity to be so closely reliant on what the perceived limitations of disability are. And yet, other than constantly reinforcing all the other things she is, beautiful, smart, kind, I don't know how to direct her away from the glaringly bright spectre of disability which inserts itself into every aspect of her life.
A week or so ago she was reading a book on body language. Out of the blue, she turned to me and said, "Very few people want to be my friend," and I felt such sorrow for her. How does a kid that can't interact with peers in the ways they interact make friends? She can't go anywhere without the interfering presence of her mom or another adult. At school she is apart because of the attention and support she receives. She doesn't understand her peers, and cannot engage them at a preteen level, and she is wholly isolated by the fact that there simply exist no social groups of children like her. The groups for children with developmental disabilities always include children with behavioural issues, which she just can't cope with, or require an IQ under 70, and the groups for sensitive, anxious, shy kids are never able to accommodate her seizures. There are no seizure social groups, and having a seizure disorder does not usually include developmental problems. Everywhere she turns, she's the odd one out.
And so she has adult friends, or little kid friends, which are nice friends but not the same. And as much as I am sure there MUST be other kids like her, finding a group that accommodates moderate delay AND a sensitive nature AND a chronic health problem has proven impossible for me up to this point. And my requests to the medical profession for assistance in contacting such families have met with no success.
And so how do I help her see past her disabilities?
Even if I wasn't the type of mom who feels that she has to know all about her own health, so she'll learn to advocate for herself, or that thinks that she gets to have input into her care, or thinks that personal experiences of otherness need to be freely addressed, there is no way she would not understand that she is different than other kids. She has doctors and medication and different rules at home and at school. She is disabled, and she is very aware of that.
But I don't like that if you ask B who she is, one of the first things, if not the first thing, she will say is disabled. She is so many other things. I am not ashamed of her being disabled, and I don't want her to be either, but I don't want her identity to be so closely reliant on what the perceived limitations of disability are. And yet, other than constantly reinforcing all the other things she is, beautiful, smart, kind, I don't know how to direct her away from the glaringly bright spectre of disability which inserts itself into every aspect of her life.
A week or so ago she was reading a book on body language. Out of the blue, she turned to me and said, "Very few people want to be my friend," and I felt such sorrow for her. How does a kid that can't interact with peers in the ways they interact make friends? She can't go anywhere without the interfering presence of her mom or another adult. At school she is apart because of the attention and support she receives. She doesn't understand her peers, and cannot engage them at a preteen level, and she is wholly isolated by the fact that there simply exist no social groups of children like her. The groups for children with developmental disabilities always include children with behavioural issues, which she just can't cope with, or require an IQ under 70, and the groups for sensitive, anxious, shy kids are never able to accommodate her seizures. There are no seizure social groups, and having a seizure disorder does not usually include developmental problems. Everywhere she turns, she's the odd one out.
And so she has adult friends, or little kid friends, which are nice friends but not the same. And as much as I am sure there MUST be other kids like her, finding a group that accommodates moderate delay AND a sensitive nature AND a chronic health problem has proven impossible for me up to this point. And my requests to the medical profession for assistance in contacting such families have met with no success.
And so how do I help her see past her disabilities?
Friday, February 4, 2011
One Of B's Gifts
Along with reading, which B has always excelled at, one of her other talents is remembering both the words and the melody of songs. The kid is a sponge for music. I keep trying to get her interested in choir, or voice lessons, but she won't go for it. She only needs to hear a song once to get it down, and she will remember it for years, spontaneously usually.
Two days ago, on Wednesday, we had an appointment at Hematology. B needs to get some blood work down, because we are going to suppress her period. The pediatric gynecologist needs to know if she's at risk for further strokes, so that we can decide how to do that. Birth control can increase the risk of strokes. We had to wait for the doctor for a long time, which meant having to keep B entertained. For a while she was happy wearing a mask and pretending she was the Grinch Doctor who was going to operate on me.
I got her up to waltz with me, while I hummed. All of a sudden she said, "I know the Coast Salish National Anthem," and she started to sing it. She sang the whole thing, very well, with all the tonal changes and proper pacing. I was blown away, and I felt just so overcome with pride for her.
Her school has a large First Nations population, 64% of the student body is First Nations. We are not First Nations, but I have always really liked the diversity of her school. The majority of the other students are English as a second language, largely Asian. This has been an overwhelmingly positive part of her education. Her school teaches a First Nations curriculum, and so she has learned so much about the culture.
I knew, of course, that they sang the Anthem at the school, but I hadn't realised how well she had learned it until she sang it to me.
When she was done, and I wiped my teary eyes, I told her that she had just demonstrated more cultural awareness than most people I had met. And I am so proud of her. And grateful to her classmates and school for sharing that with her.
Two days ago, on Wednesday, we had an appointment at Hematology. B needs to get some blood work down, because we are going to suppress her period. The pediatric gynecologist needs to know if she's at risk for further strokes, so that we can decide how to do that. Birth control can increase the risk of strokes. We had to wait for the doctor for a long time, which meant having to keep B entertained. For a while she was happy wearing a mask and pretending she was the Grinch Doctor who was going to operate on me.
I got her up to waltz with me, while I hummed. All of a sudden she said, "I know the Coast Salish National Anthem," and she started to sing it. She sang the whole thing, very well, with all the tonal changes and proper pacing. I was blown away, and I felt just so overcome with pride for her.
Her school has a large First Nations population, 64% of the student body is First Nations. We are not First Nations, but I have always really liked the diversity of her school. The majority of the other students are English as a second language, largely Asian. This has been an overwhelmingly positive part of her education. Her school teaches a First Nations curriculum, and so she has learned so much about the culture.
I knew, of course, that they sang the Anthem at the school, but I hadn't realised how well she had learned it until she sang it to me.
When she was done, and I wiped my teary eyes, I told her that she had just demonstrated more cultural awareness than most people I had met. And I am so proud of her. And grateful to her classmates and school for sharing that with her.
Wednesday, February 2, 2011
B
B may be the most romantic person I have ever met. She firmly believes in love and family. Sometimes I think she may burst from the love she feels. The people that she loves fill her whole world, and she becomes very upset when people get mad at her, no matter how slight the actual situation.
It totally brings home for me the fact that I am the least romantic person I know, and that she is not a copy of me at all. She is one hundred times more sensitive, and I constantly have to work to keep that in mind.
A big part of her romantic worldview revolves around her relationship with me. Even at twelve years old, B requires all my attention. She needs constant hugging and cuddling. I do think that any prolonged absence from me would be very hard on her, more than most children. I know the common belief is to start pushing children towards independence as soon as possible, but that has always felt counter-intuitive to me, as it has to many of my friends. I think that you should let them have their independence as they fight for it, but that until that happens you shouldn't push them to it.
I often see people blaming society and the media for the problems kids have today, but I despise the whole concept that the problems we have now are different and more severe than ever before, and that there is some good old time to look back on. When was this mystical time that children, or anyone else, didn't have poverty, sex, abuse, drugs or alcohol, or world conflict to deal with? Always the world has tried to wrest children from their parents as soon as possible, either through the busy lives of parents, or through the institutions that have been established to care for them. I think we're told to let go way sooner than we should, but that is not new to this society.
The reason I am writing this is that I am intensely aware that I have been the only parent at this school, or in her last one, that still drops off and picks up their child everyday, still goes in and and spends lunch time with her, still displays copious amounts of physical affection in public. At least in her grade for the last couple of years, I mean, and in front of her peers. This isn't the fault of the other parents, they have to work, and their kids have a more developed sense of what's cool for school. B still wants to take Pooh Bear to school. But I feel very much that we're the exception to the rule, and that the professionals that work with her might push for more separation if she wasn't B. Just that underlying idea of proper parental involvement, which is sort of unspoken, at least to me.
I think this is reinforced by experiences I've watched my friends have, wherein they've had conflict with their schools about having the right to bring their kids in late, or having the right to excuse them from school when they want to, even for very good reasons. I watch them struggle for the right to be the experts on their kid's needs, while some, not all but some, professionals challenge them. It's because of this that I feel happy that B has had so much investigation, and I have professional directives from doctors and psychologists not to push her. If not for that, this would be so much harder.
The upshot is that I get to indulge B's romantic ideas of love and family. She is really untouched by the outside world. Not because we don't give her plenty of exposure, we do, it's just that her romanticism overrides any negative input. As a result, she's often a very positive person to hang around. Even her anxiety and depression eventually give way to her romanticism.
B still fully believes in Santa Claus, the Easter Bunny, and the Tooth Fairy. The Tooth Fairy is my fault, every time she loses a tooth, I write a note from her Tooth Fairy to her. The fairy, Lilly TooSilly belongs to a local Tooth Fairy union. Sometimes I feel like I should tell her the truth, but when I've broached the subject, her romantic worldview refuses to contemplate that all these entities might not exist.
It totally brings home for me the fact that I am the least romantic person I know, and that she is not a copy of me at all. She is one hundred times more sensitive, and I constantly have to work to keep that in mind.
A big part of her romantic worldview revolves around her relationship with me. Even at twelve years old, B requires all my attention. She needs constant hugging and cuddling. I do think that any prolonged absence from me would be very hard on her, more than most children. I know the common belief is to start pushing children towards independence as soon as possible, but that has always felt counter-intuitive to me, as it has to many of my friends. I think that you should let them have their independence as they fight for it, but that until that happens you shouldn't push them to it.
I often see people blaming society and the media for the problems kids have today, but I despise the whole concept that the problems we have now are different and more severe than ever before, and that there is some good old time to look back on. When was this mystical time that children, or anyone else, didn't have poverty, sex, abuse, drugs or alcohol, or world conflict to deal with? Always the world has tried to wrest children from their parents as soon as possible, either through the busy lives of parents, or through the institutions that have been established to care for them. I think we're told to let go way sooner than we should, but that is not new to this society.
The reason I am writing this is that I am intensely aware that I have been the only parent at this school, or in her last one, that still drops off and picks up their child everyday, still goes in and and spends lunch time with her, still displays copious amounts of physical affection in public. At least in her grade for the last couple of years, I mean, and in front of her peers. This isn't the fault of the other parents, they have to work, and their kids have a more developed sense of what's cool for school. B still wants to take Pooh Bear to school. But I feel very much that we're the exception to the rule, and that the professionals that work with her might push for more separation if she wasn't B. Just that underlying idea of proper parental involvement, which is sort of unspoken, at least to me.
I think this is reinforced by experiences I've watched my friends have, wherein they've had conflict with their schools about having the right to bring their kids in late, or having the right to excuse them from school when they want to, even for very good reasons. I watch them struggle for the right to be the experts on their kid's needs, while some, not all but some, professionals challenge them. It's because of this that I feel happy that B has had so much investigation, and I have professional directives from doctors and psychologists not to push her. If not for that, this would be so much harder.
The upshot is that I get to indulge B's romantic ideas of love and family. She is really untouched by the outside world. Not because we don't give her plenty of exposure, we do, it's just that her romanticism overrides any negative input. As a result, she's often a very positive person to hang around. Even her anxiety and depression eventually give way to her romanticism.
B still fully believes in Santa Claus, the Easter Bunny, and the Tooth Fairy. The Tooth Fairy is my fault, every time she loses a tooth, I write a note from her Tooth Fairy to her. The fairy, Lilly TooSilly belongs to a local Tooth Fairy union. Sometimes I feel like I should tell her the truth, but when I've broached the subject, her romantic worldview refuses to contemplate that all these entities might not exist.
Sunday, January 23, 2011
B Wrote A Poem
I wish I was a big cloud floating above the school,
I wish I was the moon looking down on everyone,
I wish I was a kitten purring and having fun (just like Belle does),
I wish my dove never flew out the window,
I wish my bunny never got taken away,
I wish Andrew never fought that big scary monster in his video game,
I wish I was a big, fire breathing dragon,
I would cut down trees and make a nice house for me.
B has been giving me dragon pills and dragon DNA shots for years. :)
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. :)
Subscribe to:
Posts (Atom)