Tuesday, November 5, 2013

Goodbye, Daddy

I actually wrote this over a month ago, most of it, but I couldn't post it. I'm posting it now to have it up, so that I can go on to another post. Sometimes, you have to finish something to move on to the next. Sometimes, there's no way to just drop something, and you get stalled.

    From the beginning, you were different. I don't mean all the out-there, fun, witty, and whacky ways you were different. I mean in the way you didn't just ignore my child, or resent her presence nearly every time you saw me.
     You actually liked her. She a challenging, sweet, difficult child, and you liked her. You accepted, from the start, that SHE was always going to be my focus. That I would drop any plans in a second if she needed me. That you would have to find the ways to fit into my life, and it would never be the other way around. You loved her oddness.
     I can remember when I told her we were moving in together, she asked me if that meant she could call you daddy. Later that night, at dinner with you both, I said, "B wants to know if she can call you daddy, now." And you turned to her and smiled and said, "B, you can call me daddy if you want." You didn't hesitate.You didn't want to negotiate what all that that would mean. And you didn't tell me, you told her..
     She chose you, and you chose her.
     It started hard, and over the next five years, it got harder. That impacted our relationship, because it made doing things as not parents impossible. One of us had to be with her so that one of us could go out. I've done what work I could, at home, but not being able to get a good job impacted my self-esteem greatly, and created imbalances in our relationship that I didn't know how to tackle. So I did the most normal thing: I got a huge dog and proceeded to walk it for miles every day. I went crazy for all the things I could control to make up for all the things I couldn't. And you never made me feel bad for any of it.
     You know, you might've been the absolutely least commitment-phobic person I have ever met. You were never afraid in any situation just to see where the hell things would end up. I think out of all the science questions you answered for me, all the logic skills you shared with me, all the goofy silliness that we have in common, the not needing to even have a glimmer of the end point is the most important thing you have taught me. I had that when I was younger, but I lost it somewhere between the sick kid and school and single parenthood. That is what I will take away from knowing you, and the thing that will be a deal killer in any future (very future) relationships. "Dude, if you can't put on wings, bells, and a purple tutu and just go see what's up for the day, well, this is never going to work out."

I'm pretty sure OKCupid does not have a test for that.

I miss you. B misses you. I am sorry that you died. So many people are sorry that you died. You were a beautiful person, and I am happy to have known you. Thank you for loving me. Thank you for loving B. We love you back.

Tuesday, July 23, 2013

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.

Thursday, April 18, 2013

Ritalin For Everyone!

Quite frequently I see posts on Facebook by my friends such as these:

Implying  that kids who have ADHD are simply normal energy level kids, and that parents and educators are lazy and just don't want to make the effort to control their kids.
     I can't answer for the system in the US, only here in Canada. B has ADD as one of her diagnosis. I have more experience than most people ever will in the child psychiatric and health arena, and I am going to say now, and for the record: Unless you have a kid with a diagnosed mental health disorder, you have no idea how lengthy and involved and complicated it is to get them diagnosed, so you should probably stop acting like you do.
     Even getting B diagnosed with ADD took several visits to Children's Hospital,  and hours, I mean HOURS of filling out mental health questionnaires. Dozens of them, all with similar yet slightly semantically different questions. She had to be interviewed and tested by two psychiatrists, and not just once, but five or six times over her life by different psychiatrists, all of whom can UNdiagnose as well as diagnose. That was what happened with her diagnosis of Nonverbal Learning Disorder. She was diagnosed with it when she was five and UNdiagnosed with it when she was a couple of years older, in a diagnostic test at Sunny Hill that took, and I am not exaggerating here, a full week to undergo. Seriously, 8 hours a day for a week.
     So let's be very clear here: In Canada, you do not walk in to a clinic and say: "Hey, Jimmy won't eat his peas and keeps jumping off the couch," and the doctor says, "Well, that sounds like ADD. I won't recommend any other course of action, let's simply shove Ritalin in his face and have done with it." (If your GP DID do that, report him him/her to the College of Physicians, because that is wrong.) NONE of the doctors B has had has EVER suggested medication for her ADD. For her anxiety, yes, and for her seizures, yes, but not ADD. Neither did they force me to medicate, even with the seizure medications. We had appointments, options were discussed, I read up on the medicines and things were tried. And anyone thinking that all she needed was a sea grass enema, relaxation tape, and a more understanding parent is at best deluded and at worst,  insulting and assumptive. Getting your kid diagnosed is the longest and most complicated way of being a lazy parent that anyone could undertake.
     And these diagnosis are hugely important. A diagnosis makes getting services in school and in the community possible. I know people with adult children who do not have a diagnosis, and they get no services. Their kids do not have a condition that is recognised, so they get nothing despite being fully acknowledged as having developmental, mental health, or physical problems. These services are not extra special treats that our kids are spoiled with, these services are meant to make independence or family life a bit more realistic and possible for us and our kids. Make no mistake, these kids 30-40 years ago were too often stuck in mental hospitals and abused their whole lives. They deserve better.
     And sometimes better means medication. And sometimes it works well, and some times it doesn't. And sometimes you have to try again. A lot of medicine is just educated guess work, and psychiatry is a soft science, but it is informed by hard science, by neurology and neuroscience, and there are things about the brain that are measurable and treatable.
     A few months ago, a friend posted this video:

     First, this video was made by the Citizens Commission on Human Rights, which sounds legitimate, but is actually a bogus mental health organisation run by the Church of Scientology. I wrote about them in an earlier post. I am not taking any advice on mental health from a bogus institution that bilks millions and was an admitted scam by L. Ron Hubbard. Second, even if this were by a legitimate mental health group, the perceived message here is that, "Parents and educators are just putting down non-conformists! Fight the man!" but the message I take from it is, "You can't have a mental health disorder and be anything but a mental health disorder. A diagnosis will end your life."
     I think, with the proper diagnosis, the right therapy and even medication, you can have a mental health disorder, and live a life, and be a leader. Diagnosis, proper diagnosis, and treatment doesn't preclude that, it makes it possible.
      None of this is to say that there aren't huge problems in healthcare, that we don't have to watch and care for human rights, but that is done by supporting and helping those who are affected, not by second guessing and criticising them. Not by making assumptions you are not qualified to make.
     You know what they say about making assumptions? If you assume, you become an ass. To me.
     I think the most hurtful thing is that the parents I know who medicate their kids, it's a hard decision. You come to it  at the end of reading and trying every other thing you can find. You don't just wake up one morning and think, "Ah, you know what would make life easier? Psychiatric and medical intervention for my kid."  For parents, learning about and facing that their beloved child may have problems and needs help is painful, and difficult, and lonely. Watching your kid go through school without making friends, or handling the work, or hitting regular milestones is devastating, and these parents actually have to work harder to educate schools, family members, friends. You have to reinvent the wheel for people time and time again. It's exhausting. So maybe the next time you go to post these, maybe think that there might be a better way to support these kids, maybe there's a better way to work on change in healthcare. And maybe that starts with asking someone who is a patient how you can help.

Tuesday, February 26, 2013

The Right To Be B

    I have spent a lot of time, over the past few years, thinking about B's right to not be in the limelight. I write about her, give speeches about her, hell, I'm sitting on a novel I've written about her, fresh from an awesome editing friend. I often have to draw a fuzzy line about what is my story, and what is her story, and where my rights and what benefits I am intending end, and her rights begin.

    It's not easy. My tactic so far has been to ask her if it's alright. She has had complete access to my novel, and so far she's always wanted me to tell people about her. Still, I ask because assuming would be unethical. and sometimes she feels nervous or exposed in the moment, and needs to wrap her head around what is going on. I try to respect that.

    When a certain young girl in the news now was insulted by a satirical newspaper, that is what I thought about. I'm not going to name them or link to any stories. If you don't know what I am talking about, then, oh hai, how's it going under your rock?

    As much as it was offensive, and it was, my immediate thoughts were that this little girl spent the night attending what surely must have been a magical night for her ( I consider award ceremonies elitist crapola, but most people don't) and woke up the next morning to a pile of shit. No nine year old should have to experience that. But the actuality of the insult and the retraction would be just the start, as endless commenting and articles and stories would surely follow. All without that girl or her family having indicated what they wanted, what they thought would be justice. Well meaning people would express their outrage, and bigots and morons would up the ante constantly. I feel so bad for what that family is going to be exposed to in the next few months. And yes, I realise that sexism and racism and classism are constantly stealing from us and grinding us down, but it's different when you are singled out.

    I determined not to read, or comment, or link to any of the avalanche of media attention, unless it is something from the girl or her family.

    This led to a sort of revelation to me. I realise that in the past I certainly have done exactly what now bothered me. I feel outrage at some horrible injustice, some abuse of an individual, and by goat, I would defend and argue and read and quote. See, that's actually a part of me, it's integral to my personality. I am a fighter, and I will willingly wade in and battle my fearsome foe, especially if I feel a kinship of oppression. But I rarely consider if that is what the person wants if they are not known personally to me. And no matter how righteous my anger, no matter how good my intentions, that's actually a pretty damn ignorant thing to do. My righteous anger does not outweigh their right to fight the fight they choose, even if that choice is not to fight at all.

   Years ago, my sister came out as a lesbian. At one point I can remember feeling resentment for her because she was not as much as a feminist as I felt I was. Why, she was a lesbian; she owed it to me and our sisters to fight, march, organise. I finally came to realise that I didn't have a right to expect that. Just living her life as an out lesbian was enough, it was brave and inherently political, and I could stuff my expectations. Not everyone is at the same place at the same time, and that's okay.

   As leftists (wherever you are on that spectrum) we actually owe it to victims of abuse not to press them into service for our anger. Even if that anger is right and just and fitting. Even if the abuse is public, and in the media, and systemic, and representative of all that is wrong in society. We need to make sure we ask how they want to pursue their justice, and that we help and defend them in the way they ask. For the larger picture, we can take our anger and use it how we see fit, but we must respect the individual, and the more the other side doesn't the more we must. We can fight the fight with those that consent to our doing so.

    B and that little girl, they owe us nothing. And even if we are fighting the fight for them, for others like them, we cannot use them without consent, even though I know we're doing it out of love.

Monday, January 7, 2013

Done Is Done

I just met with B's Psyche for what we've planned is the last time. B has received counselling through them for about two years, which is longer than they see most clients. They need to make space for more urgent cases.

I actually wasn't planning on seeing them at all after Christmas. But then B told her teachers she was going to killl herself, and then her counsellor, and so we ended up having to see them again. And while I know that it's behaviour, the counsellor at school talked to her and asked her HOW she might do it, and if she'd rehearse. So guess what she does now. Yep. Thinks about how she would do it. And rehearses.

On Saturday she had an episode and grew violent with me. My plan, that I have worked on for the past year with the behaviourist, has been to leave the apartment when she does that, until she cools down. On Saturday I couldn't because she searched for poison, and knives, and tied string around her neck, so I had to spend the whole time with her getting punched and kicked. I don't think she wants to kill herself, she's learned that it's an effective tactic to change the nature of the attention she's getting from expectation to one of concern, but I do think she could do herself harm by accident or through impulse.

And so I wanted to address the underlying moods, maybe try a new med. But the psyche doesn't think that there really is a good one to give her. So, no meds, no more counselling, and soon, no more behaviourist.

"Let's just wait and see."

And then we discussed how she's unlikely to get support from Community Living BC, because her IQ is not less than 70.

I cried in frustration. I almost never cry.

The psyche asked if I had considered putting her in foster care for a break. No. Absolutely not. Yep, I could get someone really great. I could also get a nasty and judgemental twit that could make our lives hell. Regardless, I refuse to participate in a system that will pay someone else, but not me, to take care of her. Will not. She has a perfectly good and dedicated mother. THAT should be supported. Plus, she is so attached to me, that would kill her.

I feel very misanthropic right now. Disabled people, especially children, are the absolutely most vulnerable in the world. They have no homeland, no area of town to visit, and they might not even have very much in common with other people with disabilities. Persons like B are even completely dependent on other people organising for them. And their parents are extremely over worked and under supported, making organising difficult, and leading to isolation and exhaustion. And I resent it. And I resent everyone who doesn't have to think about this right now. That isn't fair, but there you go.

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.