B Writes:

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.

A Bike For B

I have been looking, for the past year and a bit, to purchase a special bike for B. Because of her stroke at birth, her epilepsy, her spatial and attention problems, B cannot ride a regular bike and especially not in traffic. When she was little and could go on my bike it was not an issue, but now she is 13 and 130 pounds so trail-a-bikes and gators are no longer an option.

I have found the perfect bike. (See the link) We have to order it from the states. It is $1300 plus $700 shipping. We've looked into funding options, but they have not proved fruitful. Some charities only pay for specific items, some have very limited times to apply, and another wanted us to consider Canadian companies, at a cost of several thousand more for bikes not as appropriate. People have been offering to contribute to purchasing this bike, but I wanted to check out all of our options first.

Turns out ther aren't really any. :/ And the sooner we could get it, the better for B, who has been waiting for a bike for quite awhile.

So I am putting this out there. If you feel like you would like to contribute to getting B this bike, she and I would be very grateful. I have a paypal set up bikeforb@gmail.com. And please share this post with your friends.

This Post Is About Me

     Today I am going to do something I don't often do, and that is write candidly about my own emotional life. I probably should write more about it, because the parents of kids like B suffer a huge psychological toll. In my last Mandt training course, we were discussing this a bit, the grieving, isolation, fear, and the losses you experience because your peers do not get where you are, and your kid is on a completely different trajectory than you envisioned when you started down the path of parenting. And, of course, the economic realities of having a special needs kid, who not only costs more now, but will need your financial support for their whole life, can just add to your sense of futility.
     For the last two years, and the last five months in particular, I have been battling depression. I have done well, I'm active, getting lots of exercise, but I have little to no energy for friends or social situations. I'd rather spend the time with Sparky. Part of it, right now, was getting my hopes up that B would have her testing, she'd get her surgery, and the seizure part of her life would be over. But that didn't happen, and even though she's not had any seizures for a couple of months, I've been here before, and I know they will resurface. It's a waiting game, always a waiting game.
     But it is also due to the fact that working seems so difficult right now, and it is really, really hard on me. I worked so hard in school, and planned on working when I graduated, then maybe going on with more schooling. That isn't what happened, and likely won't now. I am $100,000 in debt now, to student loans, and B needs an RDSP . I can't pay both of those things.
     What's more, the longer I spend not working, the more I feel incapable of working.  And I can intellectualize that all I want, about incurring more debt being worth it, or that I can work when she's older, but none of that helps how I feel. And it makes me angry that if B was in care, the foster parent would get a couple of grand a month to care for her. I'm not knocking foster parents, what they are paid is likely not enough, and it's a hard job, but not supporting the natural parents to at least that same degree makes no sense to me. It's like setting us up for failure. I get $288 a month in disability payments for B. I just finally got respite funding of $188 dollars a month. which is not enough to hire the at home help I would need to pay for someone to be HERE to care for B at home if I worked. It would cover an after school program, but B's day is already from 7:30 am to 4:00 pm, and I don't want to make it longer. Further, if I get even a part time job, and make just a few hundred dollars a month, I will lose that funding all together.  So any job I get will have to make enough to justify losing the respite and the disability amount. That would only make sense if I got a full time job, but one that still accommodates the flexibility I need.
     That is all so convoluted, it hurts my head.
     B's Behavioural consultant suggested becoming a behavioural consultant. I have the practical experience, but not really the education for that. But, you know what, my whole life is kid and disability, and I don't want to do it for a living. I'm already burnt out. I'm going to wake up, deal with B's behaviour, take a bus, deal for a couple of hours with a kid with B's problems, then come back home and deal with B? I have other skills, I have a degree, I would like to do something that is not high stress, intensive childcare of a special needs kid.
     The good thing that has happened lately is the Mandt training. Mandt was first designed for prisons, to reduce the high death and incident rate that result from the restraints traditionally taught to guards. The fundamental principal, that all behaviour is the result of unmet need, has really helped me re frame B's behaviour. Now, when she acts out, instead of reacting to her violent behaviour, I focus on safety, establishing baseline, and trying to figure out her needs, the ones she can't express. In two weeks, I will have a very specific safety plan in place for her, but already, the incident rate has reduced, and except for a a few bits of behaviour lately, the last couple of weeks have been good.
    I am not going to give up fighting the depression. I am going to try to spend as much time as I can with people that understand me, value me, and give back to me the energy I give to them. I've realised lately how important that is, to have friends that make the effort even when I'm down. Especially then. And having that expectation, that my energy will be matched, is a very reasonable one. It's too easy, when you're feeling depressed, to allow yourself to be under valued, which just makes everything worse.

B Has A Recent New Problem

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

     I hope next week is better.

B's New Old Friend

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

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!

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?
  

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.

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.

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. :)