Thursday, November 22, 2012


     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.

Friday, July 20, 2012

B, Summer, Sparky, and Bike Fund

     Okay, wow it's been busy lately. I've been walking eight miles a day just to get B to her summer program, not including walking the dogs. I have to walk them separately, because the walks have been too long and too hot for Sparky. I've cut B back to just two days a week because it was too much for her as well. She became physical with me on Wednesday, which indicates stress. Her neurologist told me to keep her stress low to avoid seizures, but also, I have to choose my battles. A summer program was supposed to be something fun, not a chore for her.
     I also am not crazy about the woman running the program. I told her that B only manifested the behaviour issues last year, and she gave B a chastising look and asked her why she would do that. I was very taken aback. I told her to stop that and that B may have manifested bi-polar symptoms from meds, at least, that is what B's psychiatrist thinks. The woman said that it wasn't bi-polar, she knows bi-polar, and that the problem with doctors is that they think they're god. I was not impressed. She runs a summer program. I'm sure she has an expertise in that, but I can't imagine what kind of arrogance it takes, after only knowing people a couple of weeks, to completely dismiss their history, the opinion of the specialists that work with them, and substitute your own diagnosis without even being asked. I *like* B's psyche and counsellor, I have found them to be very conservative in their treatment and assessment, and they follow my lead on everything.
     I told her that I'm an atheist, I don't think anyone is god, and I'll thank her very much not to dismiss all the work we've done. This led into a discussion that her belief system makes her an optimist, and that miracles happen all the time, so B's brain injury could just, I don't know, spontaneously heal or something. Just like all those people that have regenerated missing limbs.
     It has been awhile since I've encountered this attitude so blantantly. But the importance of the program is for B to get out and do stuff and hang out with the kids in the program, so I haven't pulled B out. I will be looking for a different program next summer.
     We had a bit of a scare two weeks ago when we thought we might have to put Sparky down. He stopped pooping and was in obvious discomfort. I love that dog. We did everything to get him to poop, I even gave him two enemas. Seriously, I have never thought I would do that, but I did. We gave him laxatives, and olive oil, too. A visit to the vet, which was so stressful for him, he hates vets, revealed a mass under his spine. There's nothing to do about that, he's 14 years old. Even *if* he survived surgery, he'd never heal properly. But he finally had a poop on the day we had were going to take him in, and I almost did a happy dance of poop on the street. I'm sure he felt the same way. So we get some more time with him.
     And, on to the bike fund. I have to say, that I was really surprised at the response, and I am overwhelmed by people's generosity. As of today, there's almost $800 in the Paypal account, with more people planning to contribute. We discovered that if we have the bike shipped to Seattle instead of here, we can save $450, meaning the bike will cost about $1600, so it is firmly within our reach now. But I want to say a very sincere thank you to my friends and their friends for helping out, and a special thank you to Dot at Busted Button, who auctioned of a painting for B. That was unexpected and truly kind. Thank you.

Sunday, June 24, 2012

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 And please share this post with your friends.

Monday, June 4, 2012

The Positive From A Rough Morning

     B awoke in a rage this morning. Andrew had turned on SpongeBob Squarepants on her computer. The "Are you ready?" of the opening song compels B to get up. It is her weakness, and she does not appreciate that we know this. She got up and growled, then watched some and ate her breakfast. When it came time to get dressed, she grew very angry at Andrew and shut herself in her room, determined never to talk to either of us again.

      The positive things are that she didn't hit, and she actually told him why she felt so mad.

"I am pissed because you touched my personal belongings (computer) without asking! Wouldn't you be pissed if someone did that to you? Huh?"

     That represents a huge leap for B. Her anger usually has no explanations, she just has rage and she does not know why. Thinking about it and expressing herself like that makes a huge difference in trying to calm her down.

     We gave her a few minutes, and then I got her Anger Scale and went and climbed into bed with her. We talked about where she felt she registered on it at that moment, and where we needed to get to (baseline). Then I drew some pictures on her back, and put her bra on Sparky, and all the planets aligned for her again.

     I have to say, Sparky's bosoms look simply fantastic in a bra. He needs some depilatory cream, though.

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.

Friday, April 27, 2012

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.

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.

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.

Tuesday, March 6, 2012

Our Week

Well, we've had an interesting week here. On Friday, I started Mandt training, which comprises a part of our safety plan for B to help me deal with her behaviour problems. They focus on preventative and recuperative procedures, but I will also learn proper restraint practices, should restraining her become necessary. It has proved necessary in the past, but it is a scary thing to do if you haven't had training, and I don't want her to get hurt. Or myself. I can't just leave her, she follows me around and is physically aggressive, and she has also left the apartment, which terrifies me. The training will take one full day a week for over a month, and I will need to take refreshers every year.

I like the behaviour consultant who teaches it. I think it would be a hard job, because they need to connect with both kids and adults as clients, all of whom have a wide variety of disabilities, and they can have very offensive personal views. One of his clients now is a teenage Neo-Nazi. I can't even imagine how I would deal with that.

The work with the behaviour consultant will take almost two years, and they work with her school, and all the family and caregivers, focusing on teaching US to deal with B. I like that approach. Quite frankly, I think a lot of this training would be useful for all parents, and it sucks that it is so hard to access.

On Friday, while I had my training, Andrew took B to some appointments I didn't want to reschedule. One of the things we needed done were some blood tests, and so I told him to give her Ativan before the blood tests, as she is needle phobic. Badly, although there has been some improvement lately. Still, holding a screaming kid down for blood tests is not fun. For anyone. However, some of the tests needed to go out with a courier, and so they told him to bring her back later in the day. In the interim, he asked her GP if he could safely give her MORE Ativan later in the day and the GP said yes. Unfortunately, the lab had misinformed him about the later time, so she still didn't have the tests.

And the doctor was wrong, because it was far too much Ativan, and she felt very ill later in the day. I felt bad for her AND Andrew. We'll have to schedule the blood tests properly this time. I had never heard of blood tests that needed immediate couriering.

She hasn't had any noticeable seizures lately. Now that I want them, of course, they go into hiding. The sneaky bastards.

Tuesday, February 21, 2012


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.