ASD and Type 1 Diabetes. The case of the really shitty school.

Once, while rushing off to work from dropping my kids off at school I was called a “bad mom” by one of the staff because I wasn’t standing still for the National Anthem. I was shocked. I reported the incident to the principle because a teacher should never be allowed to treat a parent that way. Instead of apologizing to me for his staff’s immature and inappropriate behaviour, the principle defended her saying that we must all stand still for the National Anthem.

That should have been my first clue as to how awful a school this was. Treating adults, nay parents, like children they can lecture and insult should have been enough of an insight as to how they must treat the actual children at that school.

But I let it go. Never thinking that this Principle’s attitude towards the parents of the school (or at least to me) might reflect how he and his staff cared for the students of the school, namely mine.

That was back when Pups was still going there. And luckily for her she was not a child with special needs. She was of above average intelligence, kind, good natured, calm and easy going. And…it appears, that is the only type of students that this school can deal well with. Or, I guess, does not really have to deal with at all.

When Bean started attending the school I thought (wrongly) that it would be as good an experience as Pups had had. Alas I was mistaken. Adding to the pot some ADHD and Autism created a school environment that I was not expecting, nor was prepared to contend with. I didn’t make very many right moves. I allowed myself to be convinced by the administration of the school that they were doing all that they could to work and care for my child in order to help her succeed.

They lied. Or at least, they did not follow through.

What little they did do I thought was a lot. That was until I started to do my own research on the school board and its responsibilities in so far as special needs are concerned. I was shocked and even ashamed to discover that the school was doing the most minimal amount required to help and nurture my child, if even that. I started to become “that parent”. The parent that always had another complaint and request. The parent that was always in the office looking to speak with the principle or VP. I was the parent they tried to avoid. The parent that never left anything alone.

I was the parent without blinders on anymore. I was my child’s advocate.

One would assume that I was enough of a pain in the ass that the school staff would learn not to screw with me. That at the very least, THE VERY LEAST, they would make sure that I was appeased, my children properly cared for, in order to keep me quiet. They are either not that smart or truly don’t care about the well being of their students. I’m thinking they are a bit from column A and the rest from column B.

And this was when they were dealing with Autism.

Sorry, “Asperger’s”.

If the child isn’t non-verbal apparently the school doesn’t seem to recognize it as actually being part of the autism spectrum, at least not “really autistic”. This was told to me by one of the head admin for the school.

This school originally denied Bean’s ADHD, they denied her AS. Even after formal diagnoses were brought in as proof they consistently told me what was AS and what wasn’t. They rejected my request for her teachers to be more sensitive to her conditions, especially her anxiety disorder. They were inconsiderate when it came to her suspected Celiac and diet restrictions – and that’s putting it mildly. They manipulated me in order to avoid giving her psycho-educational and cognitive assessments done. The numerous psychiatrists we saw for Bean had forewarned me that the school would attempt everything in their power to not assess Bean for any LD’s (learning dissibilities) she may have in order to save costs.

And then, as if all that wasn’t enough, I sent Bear (newly diagnosed with T1D) to that school.

I guess I thought that Autism was one thing, but a disease in which one depended on life sustaining meds was another. Perhaps all had gone badly with Bean because the school, the staff, truly saw a different kid then the one we knew. Perhaps their experience with AS in girls was limited or non existent. I convinced myself that although the issues with Bean were many, were constant, were not acceptable…that those issues would not fall on to Bear. Because Bear had diabetes, Type 1 Diabetes. A chronic disease. An autoimmune disorder. A condition that required, as mentioned, LIFE SUSTAINING MEDICATION. 

Nope. All of that didn’t make a difference. The administration wasn’t taking his condition seriously, or they weren’t thinking of the implications it would have on them if he was hurt because of their refusal to care for him properly. So I wrote them a letter in hopes of bettering the care of the next child they encountered with Diabetes. In hopes that they would now know how to respond to the issues a student with T1D faces efficiently, safely, responsibly.

At the end of the letter I attached forms and documents that I encouraged the administration to read up on.

This did nothing.

This school that Bean and Bear attended had finally reached its limit of irresponsibility and neglect for me. I wish I could say “fool me once shame on you, fool me twice shame on me”, but in this instance it’s more like “fool me over and over again till I don’t know what else to do and I finally start looking for a way out”.

Shame on me.

This lack of proper care and smudging of the rights of my children at that school was astounding. And although I blame myself for letting so much of it happen without educating myself on my children’s rights – this school proved time and time again that it was not the right place for my children. 

I really am saddened by this. I hoped my kids could go to a school close to our home. I hoped that this school would support my children and care for them.

In the end the best choice, the safest choice, was to remove my children from that environment. To hopefully find a school that will see them as sweet and smart kids who also happen to need a bit of extra care – and not see them as just another burden with a really bitchy mom.

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7 Comments

Filed under ADHD, ASD is more than what you see, Asperger's, Aspergirls, autism, celiac, death, diabetes, diabetes and illness, diagnosed, Dyspraxia, education, ipad, Motor Praxis, Sensory Processing Disorder

7 responses to “ASD and Type 1 Diabetes. The case of the really shitty school.

  1. I’m so sorry this has been your experience…I am going to be entering “the system” next year with my ASD son going into tdsb SK and I must say that so far, it’s been a wonderfully supportive experience (my NT daughter is already there), but I know that from school to school (and staff to staff), there are huge oceans of difference in how our children are treated. I really hope for your sake that you can find an environment that embraces your amazing mama-bear spirit, and much more importantly, your wonderful children. Sending you strength for the journey ahead (I know that even asking for an out-of-district transfer can be an issue at times…ugh).

  2. I can so sympathise. We moved our DD from her “wonderful” private school to a nearby state school because they were able to manage her dietary and toileting needs despite having 30 kids in her class compared to the private school’s 19! The private school were unable to support her during her final weeks there, to the extent that my Mum and I shared the responsibility of being at her school for 2 hours a day “just in case” there was a problem.

    However, her state school were wonderful and she’s gone from strength to strength. Sadly, the same cannot be said for our younger DS, who’s multiple food allergies, rare gastro-condition and learning difficulties (dyspraxia) are evidently all a figment of our imaginations, despite diagnosis from well recognised experts, including Great Ormond Street Hospital (London).

    He will be moving to our village school in September, who have already started the process of getting a care plan in place to ensure he gets the best help, care and support for his school career.

    I wish you well in your journey – what a shame that schools like these (and attitudes!) still exist in both the US and the UK.

    Rx

  3. I have been consistently surprised and shocked by the way the TDSB seems to disregard its students – yet whenever I am convinced it is a terrible institution someone tells me about a wonderful school or a wonderful teacher. I’m more sure now then ever that whether the TDSB is good or bad – ultimately it’s the staff that can make the difference. I believe we can find the right place for Bean and Bear. I just never thought searching out the right school would be such a treasure hunt!

  4. Two words for you…law suit. The schools are REQUIRED by federal law to provide these services to your children. Call an attorney. Now.

  5. Now that my oldest monkey is in middle school, I too have had problems with the teachers understanding that Asperger’s is really autism. In meetings with his teachers, I have stopped referring to it as Asperger’s and simply say, “He is AUTISTIC!” That word they understand. Barely.
    On top of that, middle schools don’t really like it when students are dually exceptional – in my monkey’s case, gifted and autistic. When having meetings in regards to his IEP, his teachers have repeatedly said, “Well, this is a gifted class and we have high expectations.” Good. Have high expectations. He needs it. But, you are required to accommodate him and modify assignments as needed.
    Unfortunately, I teach in the same school district and have to watch how far I take things. I have actually been told before, “You might want to rethink how you approach this. You don’t want to ruffle feathers.” Which sucks. I have pissed off the registrar at his middle school when they put him in the “special ed” track and not in the gifted track, saying they couldn’t serve him on the gifted track. Nonsense, You HAVE to serve him.
    Luckily, we only have one more year of middle school. Of course, then we have high school to contend with…

  6. Unbelievable! My South African primary school did a better job! A girl in my class had diabetes. Teachers had insulin if needed, and were educated on hypos. They educated the class on diabetes, told us that we should fetch them immediately if the girl showed signs and also reminded us that the rest of us still can’t have sweets in class. There was no fuss, and they’d do it.

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