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.

Sunday, September 19, 2010


     This past week, B had two specialist appointments. We saw a pediatric gynecologist on Wednesday. What an incredible specialty. Only two such specialists practice in Vancouver. We discussed suppressing B's menstrual cycle, because I don't think she will have the ability to handle it, and the public health nurse, her pediatrician, and her neurologist all agree. B will not remember to check and change her pads, and would likely need physical help to do that. I want to spare her the stress of having to do all that.
     Our choices are hormonal treatments, of which there are less choices than with adult women, or a Mirena IUD, if her uterus is large enough to accommodate one. I don't want to do anything that will affect her ability to have children in the future. I don't feel that I should make that choice for her, and certainly not now. Nor do I want to affect her libido in any way, as I have no reason to expect that she will not want to have loving, sexual relationships when she becomes an adult.
     We have to wait until she menstruates to do anything, but the appointment answered my questions, and helped me to feel like I've made a good choice. Before the appointment, I showed her videos on menstruation, and then some on fetal development. The one on fetal development had a rotating 3-D representation of a fetus and, for some reason, B found it uproariously funny. She laughed all the way through it, then ran into the kitchen and yelled, "I am a fetus. I am just developing arms!" then she started spinning and said, "Now I am at 26 weeks," and laughed herself into hysterics. I laughed because of her laughter, but I remain unclear on why she found it so very funny. I suppose that I've just not mined fetal development as a source of comedy, but I should start.
     In the waiting room she played with a Rube Goldberg machine. It has two wheels that, when you turn them, move balls up and down a complex series of buckets and ramps. Even I find it very captivating. As she played with it, a young boy about her age came in with his grandmother. He seemed very angry about something, flopping down in a chair, crossing his arms, and giving Grandma the old stink eye. But then he saw B, turning the wheels on the machine, and he went over and asked if he could play. She said sure, and he sat down and started giving directions, to which she kept replying, "I know that," growing quickly annoyed at him.
     "Do you come here a lot?" he asked her, "I do. I am a hemophiliac. Do you know what that means? It means I have special blood. If I cut myself," he drew a hand across his arm, "I could bleed to death!"
     She turned to him and said, "Do you know that I had a stroke? Do you know what a stroke is? It is when a blood clot goes into your brain. If you had a seizure, you would scream!"
     "Oh," he said. And then they repeated the whole conversation.
     I found the conversation fascinating, sad, funny, and very revealing. B does not usually volunteer so much information, and I found myself thinking that the two of them would make good friends. But grandma did not look very happy and I let it go. Children's hospital is very stressful, and you have to get a good read on people before you just approach them.
     On Friday, we saw her neurologist. Apparently I had missed some calls the day before changing the time from 9:30 a.m. to noon, but after some phone calls the doctor came in at 10:30, so we didn't wait long. The nurse took B for weighing and blood pressure, and I went right into the doctor. We have decided to change her meds, from Lamotrigine and Epival, to Epival and Tegretol. The next few weeks will prove stressful, as I wean her slowly off the Lamotrigine while slowly increasing the Tegretol. That means taking three seizure meds until the process finishes. As usual, I hope this combination will work, but have to remain practical that it might not.
     After we got home, the doctor's nurse phoned to tell me that when she had B alone, in response to the nurse's casual chat while she weighed her, B had said she wanted to blow up her school. She doesn't mean that, of course, she picked it up somewhere, and it entered into her series of perseverations that occur when she feels anxious. But, of course, the nurse does have to report it to me, and I have to report it to her new counsellor who will take over her therapy in October. I have had many talks with her about why saying such things might scare people, and had another talk with her after talking to nurse, during which she felt awful, guilty, and embarrassed despite mine and Andrew's assurances that we know she doesn't mean it, didn't mean to say it, and that we both love her.
     In other news, she had two seizures this week, one on Wednesday crossing First Ave. at Commercial, which scared me because I had to hold up the traffic, and one tonight, in the bathtub. I can't pick her up anymore, so I will have to get a bath chair or something, because trying to move her around the bathtub has become very difficult.

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.

Monday, September 6, 2010

My Fears

     It likely won't surprise you that in my dark hours I have many fears about B. About her safety, about her future, about her growing up and achieving some sort of self-sufficiency and having, always, some people to care for her and watch over her. Sometimes I wake up in a panic, feeling that I'm not doing enough to prepare her to be on her own, that I am failing to provide financially for whatever care or support she might need after I am dead. Most parents likely have some fears about this, as most of us learn that even careful planning cannot prepare us for a treacherous and uncertain life. But most parents are raising children who will grow up, get jobs, go to college and create their own life extraneous to their parents' lives. And, honestly, I think B might not ever have those things.
     Don't get me wrong, I want those things for her, and I am certainly going to work with the intention that she will, I just accept that that may not be the case, and that my child has a real possibility of needing other preparations made. And sometimes that gets me down. Often even simple things, things other people take for granted, can cause me overwhelming anxiety when I try to imagine B doing them.
      A case in point: We've been working with a nice and very thorough public health nurse to get B some supports that she has been lacking. Even though we've been in contact  with the Health authority  before, for some reason none of the other nurses offered any of the help that this nurse has provided. She even felt some surprise about that and is not sure why her office hasn't been more involved. She apologised to us for it.
     For our part, we've had contact with them since B was born, and several times since she's been in school, and none had ever mentioned any of the things that this nurse has. The system is slippery, and even demanding and boisterous people like myself can apparently fall through the cracks.
     This nurse and I were talking on the phone awhile ago and, quite off the cuff, she said that she thought that B could soon take the bus by herself. I was immediately filled with panic at the mere suggestion of it. "But what about her seizures?" I protested. The nurse said there was another young boy. older than B, that she had worked with, who had seizures and his parents just pinned a note to his jacket in case he had one.
     I cannot convey adequately the horror that brings to my heart. I don't know this boy, or what kind of seizures he has, but I do know that even B's workers at school, who experience B's seizures frequently and have been trained to deal with them, often cannot tell she's having them even if they are looking right at her. Perhaps that boy has tonic clonic ones only, the jerking kind that cause him to drop and move in a way that most people will recognise as seizures, but B may not register anything but a blank stare, or she might just moan a bit and make some strange movements. The ones she has while standing or walking do not make her fall and jerk, in fact she will just keep walking but be completely unaware of what she is doing. This means the very real possibility of missing her stop or walking into traffic anytime she is outside. How big of a note will I need to let the crazy people who drive a hundred miles an hour down Hastings St. what her seizures look like in case she suddenly walks into the road? And this does not even address the long recovery time she needs after a seizure, during which time she is completely incapacitated and extremely vulnerable. It scares the living shit out of me to think of her being by herself when that happens.
     But okay, lets say her seizures are suddenly controlled and she doesn't have one for a year. We still have a child that when you say, "Honey, pass me that huge jar of glowing red and green lights from the table you are standing right next to," will run into the kitchen or the bathroom, because she has damage to the areas of the brain that deal with spatial processing. Getting her to pass you something that she's standing next to, or sitting next to takes explicit and detailed instructions, "Turn around, look at the shelf, now look at the shelf below that one, now see the green thing, now pick it up." This is a child who, when you say, "Let's go to the gas station," will run out the gate and turn the wrong way even though she's been there a million times, and you can see it, it's right there.
     So, write her a note, you say. But she's not going to remember she has a note.  Even if it's a huge flashing note that I've hung around her neck.
     After the nurse told me about the boy, and I experienced my moment of blustery terror, I collected myself and said, "I don't mean to sound so negative, but that is so very, very far from where we are right now, that I can't even imagine that ever happening."
     Since then I've thought about that. I guess I'm a little surprised that she read all of B's reports, talked to me extensively about B's issues, and still made that suggestion. But then I thought, "But see, she has that problem that so many do. She's met B, and B does NOT look so impaired, and I have so long dealt with these issues that I just naturally and unobtrusively compensate for B's challenges, that the nurse has added 2 and 2 and come up with 167."
     I can't imagine sending B off on the bus. I can't imagine sending her out back with the garbage.
     So, if her seizures become controlled, really controlled, and she can at least find the table, and she develops a memory that holds things for longer than two minutes, then and only then, will I consider sticking a note on her and sending her off alone

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?
     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.