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.

B's Rage

     So, we're taking B off the Citalopram. Her incidence of insomnia and rage did not go away with a lowering of the dose. She was engaging in dangerous and abusive behaviour at home and at school. Apparently citalopram can cause bipolar like symptoms, and boy, has she been having those. It sucks to wish your child was just morbidly depressed again.
     The past month has been stressful, and even though the school year is essentially over, I've still taken her out of school for the remainder of the year. I don't want her getting a reputation for disruptive behaviour at school when it's meds, and it just isn't safe for her or the workers.
    On the plus side, I've been doing a LOT of walking. For exercise, stress relief, and mental housekeeping. Cheaper than drinking.

 I really hope the insomnia and rage stop with the meds. Hope for us.

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 Possible High School Class

     Well, we went to see the class today. B felt fine until we got there, then she melted down. I gave her an Ativan and she crawled under a table. She was wearing fairy wings. Altogether, it did not inspire confidence in me about the transition.
     The class takes about twelve kids a year for two years. All the kids are like her, sensitive and nervous. On the list of requirements for the class it said, "Able to be unsupervised during lunch and recess," and, "Takes transit independently." Both are a huge no, and it caused me a lot of concern. Sometimes they might take the kids to see a movie and then dismiss them from there. The whole idea of B trying to find her way around on transit scares me very much.
     So these are things we'd need to address if she went there. Also, I would start her very slowly and try to mitigate the issues as they arise. I don't know how I feel about it yet, but there a few/no choices. It's this kind of thing that makes me want to move her some place tiny and just let her be. Which would be better for her? I honestly don't know sometimes.
    The first step is taking her the class later this week when it's quieter and seeing if she can handle it.

When Mommy's Sick

     I haven't posted in awhile, because I've been the sickest I've ever been in my life. I've had lymphadenitis and cellulitis, horrible infections, since the 1st. I've had to have IV antibiotics to treat it, and I've been in and out of the hospital. The rest of the time I've been barely mobile.
     All of which has been very hard for B. B has not been to school since I got sick, except for Wednesday when my friend took her in, because I can't take her in or drop her off, and I can't pick her up if she has a seizure. So, she's just been home, with a mom who's been barely conscious for the last week, not giving her attention, and only doing the barest momming. On top of that, she's felt worried that I might have something more serious and I just didn't tell her.
     This lead to an emotional breakdown on Saturday, the day I could least deal with it, because that was the day I grew worse and had to go to the hospital by ambulance.  I had to make sure, when I started feeling even a bit better, to sit down and cuddle her and talk to her.
     It's not that she lacks empathy, she is quite empathetic, she just has a lot of trouble expressing negative emotions and has a tendency to explode with crying and anger. It is very worrisome.
     In other news, she drew herself as a fetus, with the most amusing flipper feet I've ever seen. She also wants a skull.

   

B's New Meds

     Well, B has been on her new anti-depressant for over a month now, and I think there's been an improvement. She's started actually doing things without me again. She will go and watch a movie, or play on her Wii, instead of just hanging on me all day. And she's started to make things again. The other day, we made a book shaped like a hand, to write down reasons we are thankful. It's very cute.
     Also, she's more chatty. Tonight she was very entertaining, telling me all about the "Other Mother" with no eyes, with whom she made pancakes (from Coraline). And she asked me to teach her to cook, so I had her help me with dinner.
     She's still not keen on going out much, and still isn't into going to school much. Also, she's  still sleeping a lot, and having trouble with decisions. So, we've increased her meds, and I'm going to keep her other meds the same, but hopefully she'll continue to improve.
     She's been having night time seizure activity, and some absence episodes, but no Complex Partials since Christmas day. None of that really means anything, she's had periods of lower seizure activity before, but it's a nice break.
     Man, would I love for her to get back to full time school, so that I can get a job. Andrew won't give me his job, even though I think that if I comb my hair just right, we're identical!

 

More Applying For Apparently Invisible and Imaginary Services

     Today B and I had a visit from the lady who assesses children for the At Home program. She was nice, but I'm rather burnt out right now and very tried of applying to programs that turn us down all the time, even though, as this woman noted, B has the most complex profile she has encountered. But as usual, B surpasses or has disabilities outside the range of the questionaire. The woman asked if B can use a spoon or put on a shirt. She can do both. She can go get neither, or will sit in front of her food and forget to eat, or get get an inappropriate shirt if she does actually manage to find them. If she were spoon fed, she fits the profile, but because the problems are that she can't be left alone to eat in case she has a seizure, she doesn't.
     Half way through I told the woman that if I seemed lacklustre to her, it wasn't because of her, it's because I don't even see the point of applying for stuff anymore. She gets turned down from VSB special programs. It's December and we still haven't heard if she'll get funding for out of school care, which I guess means I'm pretty lucky I don't need it yet. She got turned down from Big Sisters, Worry Dragons, and now that school program I had hopes for has turned her down as well.
     On top of that, she's had a horrible week of headaches and lethargy from her meds. She has practically sat on me the whole week, and if I go to another room, she follows me. She hasn't had a Complex Partial since that day she had three, but seems to be having absence seizures. I can't really tell because she's so foggy and angry right now. She needs to come off these meds, but I do not have any other med choices available.
     She did cheer up when I offered to replace her spleen with a waffle maker today. The At Home woman laughed, too.
     If she qualifies for at least the medical portion of the At Home program, she can get physiotherapy, speech therapy, and occupational therapy, as well as other things, so cross you fingers, or your legs, or eyes, whatever your religion dictates, for us.

Anxiety

     B's anxiety level has been through the roof for the last week, accompanying her surge in seizures. She has taken to begging me not to leave her at school in the morning and complaining bitterly about school when she gets home. Also, she's had a few bouts of temper tantrums at home, which is not like her, and today she felt so bad, the worker had her call me and I went and picked her up early.
     I talked to her worker today about how to help her more, and I continue to urge a dismissal of the curriculum. I am more worried about her mental state and feelings about school than I am about her attending to the work.
     On Tuesday of next week, I am going to go in and observe the classroom, to see If I can help them figure out what to do. I am in all the time, I talk to them every day about her, but I can't figure out exactly what is making her so upset right now. She keeps saying they rush her, but I think that's one of the few things she can actually identify. I think it's a combination of the seizures having a really bad effect on her memory, so she's having an extra hard time figuring out what is going on, and the trouble I often see the teachers and support have in giving up the idea of the curriculum. I can understand the difficulty. It's a huge part of their job.
     I admit that I am having a bit of an inner conflict right now. Part of me wants to say, "Screw it," and keep her home until the meds kick in, or we have to switch to new meds. I mean, I am not a mother that often forces her to do stuff. I am very lenient and accommodating, because I think her stress level is high, she has a lot to deal with, and I want her to have all the down time she needs just to be relaxed and not feel at odds with anything. And part of me just wants her to go to school because I need space and time. She's an intense child to parent. She needs constant interaction and supervision. She's high maintenance. And I also am worried that if I let her completely part with school, it will be even harder to get her back, and she needs the extra socialising and independence from me that school allows. Or should allow. Quite frankly, I am so angry at the cutbacks in support that I am seriously considering taking her to panhandle for education money outside of Campbell's and MacDiarmid's offices.
     She, of course, is not conflicted in the least. That child wants me, and pretty much only me twenty-five hours a day. This has just grown in intensity as her seizures have gotten worse over the years. Mom helps everything make sense. Mom understands how she feels and can explain it to others. And while I am far from perfect, I get frustrated and tired and snippy like any Mom, I guess B is better at focusing on my good qualities.
    I wish there was an easy answer. Hell, I wish there were ANY answers, ever, anywhere, by anyone. I wish we could give her meds for anxiety, which is much easier to treat with meds than depression or other disorders, but I am just not going to give her more meds.

The Last Month

     Well, wasn't October fun! Let's see, we started with me sick and B having an allergic reaction to her meds. We quickly slid into me having a horrible throat infection and losing my voice for three weeks. Then, just as that seemed to be clearing up, we get lice, and now I have another infection! A horribly painful one. Third one in two months.
    On top of that, her school support dropped to unacceptable levels, and I have been trying to help save her school from closing, along with being the PAC chair.
     You know what I would like?A terrifically boring November. A total snoozefest. :)
     B has been very clingy lately. She is having so many seizures, because one of her meds is dropping faster than the new med is coming up. This is leaving her vulnerable to seizures.
     Because of the drop in support, the increase in seizures worries me. Safety is very important, and for her having support is mainly about safety. However, she needs the one-on-one because without it, social interactions become so difficult for her that she simply withdraws. That is not good for her.
     An Occupational Therapist saw her at school and agreed with my request for speech recognition on her new computer. Frankly, if writing by hand  is too complex for her, I doubt she will ever master touch typing. That requires spatial skills, memorisation, muscle memory and concentration.  All areas of difficulty for her.
 I think speech recognition will help her use the computer more effectively.
    The good news is that her new haircut, which I gave her in a fit of lice fuelled panic, is absolutely adorable. I'll post pictures soon.

Losing My Voice

     I have had absolutely no voice for the better part of a week now, and barely a voice for the week previous. I have chronic laryngitis, something I have had many times in the past. My mother, brother, and I all have susceptible throats.
     It has been very hard to parent B through this. She does not pick up on non verbal cues, can't remember from one minute to the next that I can't talk, and has been very argumentative for the last couple of days due, no doubt, to the absence of my usual constant verbal assurances of love and support.
     Her memory has been worse than usual lately, from the medication change.  We watched some Invader Zim episodes the other day, and she LOVES Zim, and she kept asking me throughout the program what was going on. That's bad.
     The memory problems lead to frustration, which in turn lead to anger, guilt, and anxiety, which impacts her behaviour even worse. So it's been a weekend of me getting frustrated because I have to repeat things constantly, even though I can't talk, and her feeling anxious because I am shorter than usual out of necessity. Not a winning combination for home time.

     B is actually a lot like Gir. I love Gir.

I Am A Part Of B's Brain

     That's a weird title, but it has become more and more apparent to me lately that a big reason B doesn't like to spend time apart from me results from the fact that I have taken over certain functions that she lacks. I operate as a memory holder, a social guide, and an initiator of action for her. The world and casual social interactions remain a mystery to her, and until she grows comfortable with someone, she doesn't know what they expect from her. Those that do get to know her, I notice, also take on a part of this role, prompting her and forgiving her inability to master conversational skills. I wonder how much they notice that they do this as well?
     In new situations she has trouble following even basic social cues. People will say hi to her and she will walk right past them. She has a friendly demeanour, so doing this seems odd. When people ask her what she did, or how she feels, she turns to me to tell what we did or how she feels. She doesn't do this because she can't expend the energy, nor does she do it as a cheat. She doesn't remember or doesn't know the appropriate response.
    One thing that she has done to compensate is to manufacture memories that she doesn't possess. For instance, everything she remembers happened when she was four. I use 'remembers' loosely, lots of her memories are not real, but she understands that people have memories and so she has felt compelled to develop a scheme wherein she has memories. As a result, she says, "Mommy, remember that time we went on a boat when I was four?" and I say, "Yes, four was a very busy year for you." because she gets quite married to these "memories".
     I also have to physically steer her around quite a bit. Because she lacks the areas of the brain that process spatial information, giving her directions to find something or get something doesn't work.
     I have realised that doing without me is much more serious for her than other children, and that it has become a real source of anxiety for her for good reason. She doesn't want my continuous presence, she just needs her whole brain.

Doctors

     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.

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?
     No.
     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.

(Lack Of) Services

  Yesterday I received an e-mail from my daughter's therapist about a program we we were trying to get B into. It is a program to help children and parents learn skills for dealing with anxiety. This is part of the letter our therapist sent me:

"N isn't sure if this group would be helpful for B. She says it is very fast paced and not designed for kids with a complex developmental history. It is usually run by medical and/or psychology students under supervision who would not have any real experience with children like B. But she says you can call her and discuss B's needs more fully and see what you think."

     Here we we have a problem that I run into all the time. Services have restrictions for eligibility. On the surface, that seems logical. A service must specify who they serve so that people get appropriate services, after all, for funding, to avoid duplication of services, so that the right people go to the right programs. The problem is that kids like B have complex diagnoses and they fail the eligibility criteria of programs not because they don't meet the criteria, but because they exceed the criteria.

     It happens all the time. To the point that my daughter currently only receives therapy for her anxiety. That's it, and it took a very long time to get that.

     Before she started school, she received very good services, through the Infant Development Program and the Centre for Ability. Speech therapy, occupational therapy, physiotherapy were all provided. When children become school aged, they no longer receive those services because the school board is supposed to step in, but their services are stretched so very thin that my daughter has not seen a speech or occupational therapist in eight years, other than diagnostic ones during assessments.Assessments we have. I have assessments on her through the nose. Turning those assessments into action that is where the system is failing.
     Can you imagine what it is like for those who don't have a diagnosis since birth? There are many students in the school system, right now, with no diagnosis and no assessments. I think about that a lot, I am very lucky that B was diagnosed with a stroke at birth, because not all kids who have a stroke are diagnosed with it. It isn't something that doctors look for at birth, and it is something that only time reveals as a possibitlity.