In my absence from blogging I’ve been dealing. Dealing with Diabetes. Dealing with Autism. Dealing…or perhaps not dealing so well. But at the very least – trying.
Bean’s meltdowns the last while have been unpredictable and intense, her defiance even worse. She’s stressed as we are all stressed. She is aggressive, impatient, and angry. She’s scared and confused and hurt. If it isn’t enough that our lives have been turned upside down by the diabetes, and the “gluten challenge”, we then recently found out she has (all school year) been neglected and treated without any consideration for her autism or ADHD by her teacher. That two of her friends, her two “only” friends at school, pick on her. That she feels different and the explanation of Asperger’s isn’t quite cutting it. She needs more than just a name, she needs an understanding and her own way to deal.
To add to her feelings of exclusion over the course of the school year Bean has, several times, been left out without any care or consideration for her feelings, because her teacher (I’ll refer to her as ‘Mrs. Twit’) has given everybody candy in the classroom, or hot chocolate, but nothing to her because of her food intolerances. This would be great if it were a matter of Bean not being able to eat anything good ever. But Bean can eat substitutes for the treats her class mates are having and I have stated and stressed on numerous occasions that if I’m informed of the class treat I will bring in a suitable replacement for Bean so she can partake.
I spoke with Bean’s principle about this, and apparently it was dealt with. Awesome, it only took 6 months or so. But not totally surprising in this particular school system as it took an outsider who was assessing Bear to see that Bean herself has Dispraxia – this after a year with an OT given to us through the school.
Didn’t catch the Dispraxia there, eh OT? Even after you were told about the AS!
Then I had the challenge of trying to get Mrs. Twit to communicate with me via agenda about Bean’s studies (or lack there of). Nothing. No matter how many times I requested communication between Mrs. Twit and I, I received nothing in return. What was she learning? Was she learning anything at all? I realized the most education she was getting was through the educational apps that I had on our ipad. More then that, I saw that she liked learning on the ipad. A huge feat since getting her to do any homework was like pulling teeth. So we spoke with the VP about us (the hub and I) investing in an iPad mini for her to bring to school in order to improve her marks. I explained that she works amazingly on ipads and computers (as most kids with Asperger’s do) and that I was sure that if she could work on an ipad in class we would see a huge change in regards to her love of school and most definitely in her grades.
I was met with “well I don’t know how that will work – after all, we have to follow the curriculum and iPad’s only have games on them, not work sheets…”. Yes. That’s exactly why it will work for Bean, I thought, because they are math and spelling “games”. I asked if they don’t agree then with using iPads in this school – “Oh no!” she said “we love the use of ipads for our students” and then, and you’ll love this part, she added: “but Bean…well you know, she isn’t really what I would call “autistic”, I know you say she is, I mean, I know she is, but ipads are for children with severe autism. I mean like non-verbal autism.” “You mean ‘classic autism’?” I asked. “YES!” she responded, as if I had just saved her from digging herself further in. “For those who ‘really’ need it.”
Uh huh, right… Let’s go over the list of reasons my kid needs it, shall we?
- My child is not able to learn any of the material without accommodation. Which means that she sits up in the front of the class with the teacher like a blaring bright lightbulb to the other kids while her peers learn independently at their own desks. It also means that the teacher is preoccupied with Bean, which only adds to the spotlight on Bean.
- She hardly speaks up in class at all, if only to tell others not to touch her carefully organized stuff on her desk.
- They have to give her warnings and extra time before each transition, often she is needs to sit out if she needs to take a moment.
- She writes at a grade one level, missing words and misspelling even the simplest words (though she reads at a grade 5 level). Which is a tad suspicious since she is apparently getting a whole lot of one on one time with the teacher. What could they be working on?
- She cannot put thought to paper when asked to complete an assignment. Her reading comprehension is never apparent because she lacks the capability to translate thoughts to writing.
- She has literally not done any homework for over 8 weeks.
- I have no idea what she’s learning in class because no matter how many times I request an agenda to be sent between home and school to keep me up to date, the teacher does not follow through. And every time I get there to schedule a meeting with her she is busy. (She’s also kind of an idiot).
So, here is my daughter, D-streaming grade three. It is obvious she is very much at a grade one level in writing, reading comprehension and math and in desperate need of new or better resources to correct this. Yet they are pushing her through. Sweeping her issues under the rug so that these LD’s will eventually be somebody else’s problem. I can only assume it is because they can. As long as she can “get by” they will continue to impose on her an immense amount of “accommodations” and one on one time without actually helping her to learn how to learn and how to take that knowledge to improve and succeed in her future endeavours. All this, but that doesn’t qualify a need for her to perhaps be considered a better method to help her learn? An ipad that would most certainly advance her learning and her grade level.
Is it because it would seem unfair to the other students? Do I give a shit?
I couldn’t be bothered to go over proving how Bean is autistic, partly because I am so sick and tired of the ignorance I am spewed every day by people like this VP who put Bean into a slot of: not problematic towards the school and classroom, therefore not in real need of help or care. But also because there is no one part of Bean that *is* autistic. I can’t divvy her up into “normal parts” and “autistic parts”.
She *is* autistic.
No, she doesn’t have “Classic Autism”, that’s true. Ya got me there VP.
She has Aspergers. Or, by the new DSM V standards she has ASD level 1. And no matter how many people want to fool themselves into thinking that Asperger’s is actually not a form of autism, or that it is so mild it really doesn’t count, they will never be right. Just as Classic Autism is a “form” of autism, so is Asperger’s, so is PDD-NOS (atypical autism). Call it what you want, believe what you want – it is what it is, and that is autism. I invite anyone to come to our home during a meltdown of epic proportions and explain to me how “typical” it is for every child to act that way. To explain to me why offering her a piece of gum is the only thing that could calm her down this morning when she was shutting us all out and repeating a sentence over and over again – because the act of chewing on something is comforting to her. I invite people, the VP, to assure me that needing to do a series of specific stretches in the morning before leaving her bed or using a specific spoon, or not being able to eat if someone touched her fork first or served her food directly onto her plate is “totally normal, average, eight year old behaviours”.
But I shouldn’t have to prove her ASD to anyone, certainly not the school. They have her diagnosis in hand and that should most definitely be enough for her to access the right resources.
So I complained. Not just about how Bean wasn’t even being considered for the use of an iPad, but for how many times I have requested the teacher simply communicate with me what Bean is doing in the classroom so that I could try to help her improve those skills at home. About the pile of homework sheets that have built up over the past few months on my desk that the teacher hasn’t even bothered to inquired about.
Is this teacher just going through the motions over there? Not actually checking to see if the kids are completing their work? Or is Bean just the lucky one whose homework doesn’t really count for anything? I wouldn’t be surprised. Without trying to sound too harsh about Bean’s teacher I’ll just say she’s a woman lacking in the capacity to think logically, to consider others, to listen to parents, and to be sensitive to special needs or to educate her students effectively. My complaints (after a really baaaaad meeting with Mrs. Twit and the VP where I left yelling “screw you” to the VP, but not before slamming my hand down on the table hard and yelling at Mrs. Twit that she is to NEVER bully my child again – oh yeah, that happened) I was invited to meet with the VP and the Superintendent to figure this all out.
I admit, the meeting with the Super and the VP was a positive one where we all agreed that this past year with Mrs. Twit has been a bust. And that Bean’s education will never be sacrificed for the idiocy of a teacher, this teacher, again. Not under my watch. Bean is now allowed the use of an iPad, and I will be sitting in on a class to make sure she is able to use it and follow the curriculum.
I read a tweet the other day that so aptly put the trials and tribulations of people on the spectrum:
“If you are high functioning they don’t see your deficits, if you are low functioning they don’t see your strengths.”
This is more than just parenting, this is a fight for her deserved rights and education. I will never walk blindly again hoping that it will all somehow work out – because it must, right? Apparently life doesn’t actually work out that way. Who knew?
I see now that I must keep my eyes open, that I am her first advocate and her strongest advocate. I will walk in front of her to show her the path and the ways. And hopefully she will become her own self-advocate. I know she will. She is strong and smart and unique. It might be tough right now, it might always be tough, but even when I pass her the torch for good and she is in complete charge of her life – I’ll be there to hold her hand when she needs it, or pass her that piece of gum when things get a bit too tough to handle.