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.

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 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.

Finally, Some Good News

     B has been accepted into the At Home Program! Yay! It means that she will get her medical and medicine paid for, get Occupational Therapy , Physiotherapy, Speech Therapy, hearing aid, and any medical equipment paid for. After years of no support, finally she has access to all the intervention she needs and got before entering school.
    There was a real chance that she would be turned down, so this is unexpected and happy news.
     I might even see if I can get her Massage Therapy for anxiety.
     Now, to set all this up.

Clarity, Remedy, and Transparency

I had my meeting with C** R** from the School Board yesterday, where we discussed the following:

1. Parents of disabled children have the right, just as any other parents, to be informed of the options available for their children. We can make appointments to view the programs and have the right to approve or not approve the placements we are offered. It is in the School Act. It is law. While there was no admission of an unspoken policy of preventing "parental shopping" of disability services (and I did not expect there would be), I still am still lending credence to the fact that it does exist due to my numerous credible sources. I suspect that more and more parents will challenge the problem, and want to see a more transparent and co-operative environment in the future.

2. Parents must be informed of their rights by the School Board. Yes, it is in the School Act, but people should not be expected to know that, nor to only exercise those rights that they, themselves, can uncover. Especially for parents that have English as a second language or literacy problems, they need to be fully informed, at the beginning of grade 7, of how the transition and placement process should work.

3. If the School Board is facing funding problems so that children are restricted in their access to these programs, the School Board must be honest with the parents about what the issues are. How else are we going to know that it's funding problems and not School Board policy? How are we supposed to organise or challenge the govt for more funding? Instead of just trying to direct children to wherever they can put them, parents should be told about the programs and about wait lists. From a parent's perspective, there's a fine line between mitigating and colluding. Parents and the School Board MUST be on the same side.

4. There needs to be offered some flexibility for the timing of the transition. For instance, I am perfectly willing to keep B at M** Elementary for an extra year rather than put her in a program that is not right for her. This should be an option available to all parents, even parents of "regular" kids who may not be ready just yet to transition. Sometimes kids need some extra time. There has been some talk of having just such a program at M** Elementary, and I would like to see that happen.

5. This last issue I did not talk about with C** R**, but it has been on my mind for awhile. Last night I read that the School Board is looking at recommendations for a K-12 mini-school for First Nations children. I want the same considerations made for a K-12 mini-school for disabled children. I am not against inclusion, but my daughter has spent the last seven years with an adapted academic program, when what she has needed has been a social/life skills program that actually provides the Occupational Therapy, Speech Therapy, and Physiotherapy that she needs. Parents could have a choice of where to send their kids, but instead of having the VERY limited resources available spread out in such a way that no child's needs are being met, wouldn't it be better to concentrate them? To include community health programs in the delivery? To do outreach and have clinics so that parents with children in other schools or other communities can access them?

To add to that, the current method of inclusion actually isolates many disabled children and their parents. My daughter thinks she's the only one in her class with disabilities. She's not, but she sure is the only one with the scope of disabilities she has. She has had incredible problems making friends, and every year I must go through the long and exhausting process of teaching her teachers and workers about her. Often a few times a year, as new teachers and workers come in. I want the choice of having one place, where she goes, where she gets her therapies, has the technologies, and has a consistent and specially trained staff. I want her to meet kids like her, to not be the only kid in her class that needs the level of intervention, supervision, and instruction she needs. So much of her day is wasted time, because she has to sit through instruction that is NOT what she needs. As the psychologist at Children's Hospital said, "Learning the capital of Spain is NOT what will  benefit B." The teachers and workers are great, but my daughter spends the day reading or colouring, and what she needs is a different format. There is only so much flexibility in a standard classroom to offer her what she needs.

There are other ways of practicing inclusion. I know I'm not the only parent to feel this way. I want to have a way for it to be easier to meet parents of disabled kids, without having to ferret them out because I don't know who the other disabled kids are, or the level of disability they have. A K-12 mini school would help us share resources and knowledge in a way that is not happening with only the current model available. If advanced kids and First Nations kids have enough of a common ground and special requirements to make mini-schools a viable option, then surely disabled children do. My daughter, who has a rare and complex set of disabilities, that receive no funding, acknowledgement or support, absolutely needs to benefit from sharing the resources and advancements made in other, more recognisable areas of disability, such as Autism, Down Syndrome and learning disabilities. A mini school would enable the parents of disabled children and their children a way to work collectively, share their individual and collective experience, and benefit from the understanding and recognition that comes from working together.

Thank you,
B's Mom

It's Always Hard: How I Spent My Day

 Letters out:
 _______________________________________________________________________________
Dear Ms. R**,

I have a twelve year old daughter who is disabled. She had a stroke before birth, has poorly controlled epilepsy, emotional problems, physical problems, hearing and sight problems, and ADD. She has a very unique and complex profile.

For two years, I have been asking her school (and, by extension, the *SB) to provide me with recommendations for high school programs. My daughter cannot go to a regular program, she will be hard to place. I want to be able to go around with her to see the programs and make the best match possible. For two years the school administrators have, I have come to realise, "handled" me, for lack of a better term. They have agreed to do this while stalling and stalling.

Now I've been told that there is a program at B** Secondary they are trying to put her in. It is the only one they've mentioned, but I am not allowed to go see it, or know anything about it. I've been told the offer will be made in March, and then I can see it and ask questions. But if I don't feel it's right, I will have no other options in March, as this will leave me no time to see or apply to other programs. My daughter is routinely turned down from programs, including *SB programs. The B** program might very well be a great match for her, but unless I can see it, and take her down to show her and meet people, how do I know? I am the expert on her and what her needs are. The program may not be a fit for very good reasons that have nothing to do with the quality of the program.

I have learned through a therapist at Mental Health and the teacher at the Hospital who works on placements that I am not alone in encountering this issue. Apparently, the *SB has an unspoken policy to prevent "parental shopping" of disability programs. My issues regarding this are multi-fold:

1. It goes against the School Act, which states a parent's right to:
     "7 (2) A parent of a student of school age attending a school may, and at the request of a
teacher or principal, vice principal or director of instruction must, consult with the teacher,
principal, vice principal, or director of instruction with respect to the student’s educational
program."

2. It goes against the stated promise to encourage a parent to collaborate with all involved stated here: (website given)  ........page 10 section B.4 (Parents)
and the promised environment of co-operation regarding planning promised on page 22, where it talks about the school based team.

3. If she were a "regular" child with a special interest, or a gifted child, I would only need to go here: (website given) to see all the programs on offer by the *SB and how to register for them.

My daughter is very ill right now. Her seizures for the last year have been really out of control, and now she will be assessed for brain surgery. I have precious little time and energy to challenge the school board, but I will. Not just for my daughter, either. This is a problem faced by many parents of disabled children, and it needs to change. We have as much right to make informed choice about our child's education as anyone else. When a disabled child is preparing to transition between elementary school and high school, there needs to be a team meeting, with all concerned parties to discuss options and to make sure everyone knows their rights and responsibilities. Parents need to be fully consulted with regarding their children's future educational path.

I have talked to the Vice Principal, and was turned down for a meeting with the person who is supposedly lobbying for my child (I've never met her) and the Principal. I am willing to seek whatever manner of remedy, inside or outside of the *SB realm, that I need to get my daughter's needs met. I do not want to, I simply want equal treatment and to have a non-adversarial relationship with the *SB.

Some direction would be great. I don't just want this changed for my daughter. It needs to change for everyone.

Thank you,
B's Mom
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 Letters out: Request to know who I'd been dealing with from an advocate:

Well, last year and the year before the principal was Mr. (Principal) (I will check Monday for his full name).  I tried repeatedly to get invited to a School Team meeting, and was finally invited to one at the end of 2009, but it was cancelled at the last minute and I couldn't make the rescheduled meeting because I was in University. I was not invited to another one, even though I have talked about it regularly since my daughter started there in grade five.

This year we had a change and have a VP at the School (M** Elementary) with a principal who works at B** Elementary. High School placement was one of the first topics I brought up at with Ms. VP, and we had more than one discussion about it. I was very clear that I wanted to know my options and be able to see the programs. B's (my daughter) previous counsellor at Mental Health had recommended H** House, but Ms. VP said it was a horrible place. Why, I am not sure. I was disheartened, because it was the only suggestion I'd gotten. It doesn't matter now, they've turned her down. Everyone turns her down. That's why I am so very worried.

Ms. VP assured me this last fall that she would find recommendations and we would go together and see them, but the recommendations were not forthcoming. I talked to B's classroom assistant, and she in turn talked to  the social worker at the school. He promised to help, but every time I tried to talk to him he'd say that we'd talk later. And then his book was missing. And then he had to get it back. This went on for weeks.

Just before Christmas, Ms. VP told me about the program at B**, but she had very little information. A couple of days later I wrote and asked to see the program, and you can see the response below. I was very upset and talked to B's Therapist. I was also recently interviewed for the At Home Program, and I talked to the women who interviewed us, and she put me in contact with the teacher at the Hospital, where my daughter has had many assessments done. Both B's Therapist and the Hospital people were dismayed, but not surprised. Apparently, it happens a lot.

I feel that Ms. VP was honest at the beginning of the year about helping me, but that perhaps she found herself up against the same wall. Perhaps I am mistaken, but the whole thing feels like people trying to get out of between a rock and a hard place, and not being able to tell me about the cause of their 180 degree turns.

This year was very hard. My daughter is very sick, I became PAC chair, and we had to hit the ground running to fight the school closures. I am in the school everyday, talking to her teachers and workers. I attend every IEP meeting. The services from the school board have been virtually non existent. They have cut back the workers in her class to 1.5 for 8 kids. My daughter alone has two designations and is supposed to get full time help, but she's only going part time so I think they're using that as a justification to cut services. She is supposed to see speech and occupational therapists, but has not seen a speech therapist in eight years and only this year finally saw an occupational therapist. I am fairly inundated with specialists and doctors for her, so sometimes I am busy working on certain areas and other areas lapse. But I am tired of having to always fight for services, to always have a million miles of extra red tape, and I can only imagine how hard it must be for others with language problems or who simply don't know how to navigate the system. 

It makes me angry to think of other parents having to go through this. Our school is small, and has a student body that is 64% First Nations, 26% designated Special Needs, and has a high percentage of ESL students. I want to see a better procedure when I leave, because these students already experience enough challenges. Their parents need more ways to be involved, not less.

 I have also shared this information with J** B**, who is on the board of trustees, with the hope that that also will help affect change.

Thank you for your time, I will email you again next week.

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Letters in: To me from the person who runs the special needs education programming at the school board.



C**:

This does not sound right at all – let’s meet to review the details. I am available on Wednesday morning at 9:30 am if you are able to make it – otherwise, I’ll send you additional dates. For now – what is your daughter’s name and the school she currently attends? Have you had any connection with a case manager?

Many thanks & see you soon.

Ms. R**.

Addendum:

So, in the end, with help and support of some great people that I don't know, I FINALLY got some movement. I am curious to see how the VP will be Monday. I hope she understands that it was not personal. And I hope she understands it was very personal. 

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.

Sleep Study

     On Wednesday night, B had a sleep study. She still is somewhat sleep disordered and will sleep for a very long time, rarely seeming rested when she wakes up. She has been better about going to sleep, though.
     So we went to Children's Hospital on Wednesday. B had it in her head that it meant staying up all night, like she does for EEGs, even though I kept explaining it was a study of how she sleeps.
     Andrew came with us, which was a big help, because she was NOT happy once all the electrodes and monitors were attached. She became particularly angry about the tubes under her nose to measure her breathing. She got mad at me, Andrew, and the nurse and it took quite awhile to calm her down to sleep. She has absolutely no patience right now, a side effect of the Topamax, and while she hasn't had many seizures all week quite frankly, unless she stops experiencing such mood and anger issues, I don't think I can keep her on these meds.
     Anyways, Andrew left and I stayed. They provide a bed for one parent to stay. Well, not a bed so much as an instrument of torture, designed to make parents sit up all night weeping and swearing they will never try to sleep at the Hospital again. I experienced the same thing after her birth, a memory I had a lot of time to think about as I lay on the carefully disguised rock they call a mattress on Wednesday night. When she was born I spent everyday for a month in the Special Care Nursery, and all they provided were hideously uncomfortable chairs. Oddly high and uncushioned chairs, to mothers trying to breastfeed sick babies and who often had stitches in their vaginal openings. I developed a bad infection and they threatened to open me up again.
     When they finally moved her to a ward they gave me some fold down contraption, old, plastic, and positively hilly in all the wrong areas. It felt like sleeping on misshapen dentist's chair. One night a nurse felt sorry for me and told me I could sleep in a spare bed in B's room, and another nurse the next morning was just livid with me for that. The hospital felt hostile to parents. If I hadn't been so exhausted and emotionally blank at the time, I would have made a complaint. All I could think about was getting her home, though.
     So on Wednesday night I just could not sleep and had to keep getting up to move around. B finally fell asleep, but the nurse had to keep coming in and adjusting all the wires on  B's  head. B grew furious, and really, bad med reaction or not, I totally understood. By four in the morning she had stopped all cooperating and refused to let the nurse touch her anymore. I told the nurse to get everything off her, because I knew that girl would not be sleeping again. And she didn't. She read and watched TV, and at 5:30 a.m. we bundled up and caught a bus. We went downtown and got some food. then we came home.
     And slept.
     And we still need to do a 24hr EEG. Yay!
     I am pretty sure she will not grow up with an incredible interest in medical science. I don't blame her.
     But today we had fun. I kept her home from school to have fun with the snow, and pulled her in a sled to the Cafe for Mountainous Marshmallow hot chocolate. No mean feat, since she weighs a ton. I am convinced she eats rocks when I'm not looking.

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.

Support For B

    On Tuesday B's teacher informed me that the support for B's classroom has been brought down to 1.5 support workers. That's one full time and one half time. There's eight special needs kids in her class.
    B has always qualified for full time help and only ever received half time, and had to share that. But to have to share a worker with eight kids, that is not even remotely acceptable. That means she will recieve no help for five of her six classes. WHY THE HELL WOULD I EVEN SEND HER TO SCHOOL??
    I have some phoning to do.

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.

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.

(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.