well, the meeting happened this morning at 9am. there was the principal and the VP, the primary LST (learning support teacher for primary grades), the special education director-type from the board, asher's teacher, asher's EA, asher's paediatrician, asher's dad, me, and asher (though his contribution was mainly entertainment and some confusion, since how could we be possibly describing this child? he looks so normal!!). here's how it went down
we started with a run-down of his medical issues, and dr b went system by system, starting with heart. and yes, we got some of those reactions when she said, "basically, he has half a heart." you know the reactions i mean: when they hear that phrase and their eyes come as close as possibly to literally popping out of their head. yeah. i like those reactions. they amuse me. (yes, i have a dark sense of humour.) so that took a while, as you can imagine. and so the plan for the heart/pacemaker issues are this
we had to fill everyone in on a few things. the LST (henceforth known as "mr v" since i don't like the shift key) asked, "how will we know that he's going to faint? what sort of things should we watch for?" to which dr b and i replied, "you won't know. he'll just faint. but as soon as he's horizontal he'll wake up. it will happen when he's playing normally. and he'll just faint." you can imagine the looks we got for that answer. we also mentioned that asher is fine if he's pink or pale, and that he shouldn't turn blue anymore, so if he does, to call me, and that if he turns even faintly grey, call me immediately. don't even question; just call me. grey = bad.
when it comes to asher's immune system, it is slightly deficient (meaning, he lacks the generals that lead the troops into battle), but that he doesn't seem overly bothered by it. he hasn't had all the nasty infections that you would expect from a child with an immune deficiency, but... if there is any outbreak of anything in the school, let me know immediately, because even something simple can cause huge problems for asher.
asher's UTI habit came up, as well. the instructions for that were to let me know at the end of the day if he's been peeing more. we will have a communications book that travels with him between home and school, so they can fill me in.
but since we're on the subject of peeing... i reminded them that he is not fully potty-trained. he's poop trained, but he is still in pull-ups. this is due to the fact that a child on diurretics, who has always been on diurretics, is, well, difficult to potty train. he simply doesn't know what it is like to "have to" pee. he just pees. a lot. (oh, wow, asher's gonna kill me for this paragraph when he's older. LOL)
then we discussed the bus. ah, the school bus, bastion of normalcy. they didn't question the decision to send him on the bus, but they will make sure that he gets a medical tag to put on his backpack, so that the driver will know that he has some issues. the principal is working on getting that from the school bus company as soon as possible.
but i was delighted to hear that yesterday morning, the principal (mrs h) met asher as he arrived, and that he tried to jump off the bus. he was just that excited to arrive at school! if you know him at all, you likely aren't at all surprised to read that. and frankly, neither was i. he was sooooo excited to be a big boy going to school and riding the bus. honestly, if she had told me that asher simply climbed off, i would have been surprised. he's just not that mellow. haha
the other issue with bussing is this: when asher arrives at school, blithe will hand him off to his EA who will bring him into the school immediately. he will also have a space for his bag, coat, etc separate from the other kids. this is to avoid bumps, since that risk is highest (for everyone, actually) at in and out times. so asher will be safe in his own little area. and if the bus is late arriving, he and the EA will simply wait in the hall or outside until the rest of the kids are out of the cloakroom. also, at the end of the day, the other students will go and get ready for home, and then it's asher's turn, once they're outside. again, the risk of getting bumped is too high at this time for him to be safe, so he'll get a few extra minutes of playtime at the end of the day.
he will be allowed outside, but only with a few other kids at most. he will absolutely not be allowed onto the playground equipment (due to risk of bumps and seizures). it is simply too dangerous for him. but he is allowed to ride a bike in the kindergarten play area, so long as there is an adult and very few other children (if any). he will be staying indoors for most recesses.
as for phys ed... well, that's not an issue. because he won't be doing it. he will go into the computer lab when the rest of his class goes to gym. i'll admit, this is one of the areas that upsets me the most. he's so active, and he just sooooo wants to be normal because he is normal, and yet he won't get to participate in gym with the other kids. that's tough for me, but i know it's for his safety, so i'll accept it. i understand the reasoning, and i'm glad they're taking this seriously and making sure that he is safe. it's just that phys ed is too dangerous for him. those little kids are too unpredictable, and so is asher. so it's a bad combination. so there you have it. and on the plus side of this, asher is going to be the most computer-literate 3-year-old ever. (maybe he'll grow up and become the next bill gates or something. that would be awesome.)
we addressed the issues of his seizures, as well. these can be anything from a tonic clonic (sp?) seizure, with the shaking etc, to an absent seizure, when he just goes blank and unresponsive. this is one of the things that makes the playground so risky: if he has one of these seizures while climbing, he'll let go and fall and then... badness will ensue. i will be contacted if/when he seizes.
we discussed his migraines, as well, with this caveat: his migraines just start. there's no build-up. he'll be fine, and then he won't be. he will suddenly become lethargic, irritable, grey, confused and have a very high fever, which may or may not include seizures. so watch out for that, and call me if/when it happens. and if/when it happens, they are to give him a whopping dose of advil (shhh... don't tell nephro). and then call me.
we made sure they were very aware that asher gets very sick very fast. they laughed when i told them his nickname, "asher crasher." but i told him that he's earned it. he'll be fine one minute, and the next, he's at death's door. this is how he gets sick, regardless of what the problem is. we also told him about his "sick" language: he'll say something if he's dizzy, so there shouldn't be too much confusion there. but i also said,
"the other thing you need to pay attention to is if he says he's feeling 'much better.' he knows when he's sick, and he knows that means he'll go to the hospital. and he doesn't want to go to the hospital. so he says 'i feel much better' when he's sick. and if he tells you that, call me right away." they were surprised and alarmed by that little nugget, but since we moved from that on to PTSD, they understood quickly.
and so, i move on to PTSD. they need to be aware that he may have some difficulty adjusting at times, that he may get very upset and just want mommy or daddy. at those times, call the appropriate parent. he is in play therapy to deal with that, and when he's in therapy and is handed medical-looking toys, he buries them in the sand. so in his classroom, there will be no hospital centres or doctor kits or anything. we want to make sure he has a happy time in school, so we're just going to avoid those triggers completely.
mrs b et al are going to talk to the students in his class in the simplest, non-discriminatory terms. they will tell the students that asher may need some help from time to time, and that if something happens like he falls down, they need to tell a teacher right away. if they do this, they will be helping asher. they won't be going into any real detail, but for example, when asher faints, it happens so quickly that a teacher simply might not see. but the other kids will see it, and this is how they can help asher and be a good friend to him.
asher will also be assessed by OT due to his oral sensitivities/needs, and PT to see if there are any activities the EA can do with him in order to help with gross motor development in place of phys ed. the wait for these assessment is relatively short, so this will happen fairly soon.
all in all, it was a good meeting. very productive, and we're now all on the same page. we filled out the forms for him, so that they can give him meds and post his info for the teachers and in the teachers' books, so everyone will know him. asher also got his picture taken today, so all the staff will know what he looks like. generally, i'm happy with the plan. again, the plan to keep him out of phys ed is mildly upsetting to me, but i understand the reasoning and i'd rather have him safe than happy, if those are my choices. our goal is for asher to have a safe and happy time in school, and i think we have a plan in place that can give him that. i'm pleased with all of this, i really am. i can't wait for him to go back tomorrow. he's going to have a wonderful time in school this year!