Our daughter Pepper will turn four this year, and though she's not your average four-year-old, she'll start kindergarten in the fall.
When Pepper's older brother entered school two years ago I was nowhere near as nervous as I am now. But then Pepper is a special-needs child. And these last few months have been a traumatic roller-coaster for me.
The Ontario Ministry of Education lays out specific guidelines for inclusion, diversity and rights for all children to attend school regardless of ability, social or economic background. You may recall hundreds of parents converging to protest the Ministry’s “new” sex-ed curriculum which provides context for children of same-sex couples as well as introducing the concept of consent.
My daughter will likely never be able to express consent or lack of consent. She may not be able to scream, run, or fend off an attacker. To these parents I say: How do you think this makes me feel, that you don’t think this piece of education is important? No, I certainly don’t trust that you are going to teach this to your children at home. I simply do not. But I digress.
Most parents take for granted that once they've registered their child for junior kindergarten and met the teacher, the only stumbling block is their own anxiety. When my son entered the school system, it was seamless. Effortless.
Unfortunately, enrolling our daughter at the same school has been gruelling and heart-wrenching. There have been numerous meetings, appointments, doctors' notes and days off. Many hot tears later, we’re still unsure what September will bring for our little girl.
For starters, we await the arrival of her wheelchair, which she'll need in order to start her school year. Her educational support worker hasn't yet been chosen, and most egregious, she was rejected from the before-and-after school program at her school because of her special needs. Wait, what? Inclusive? Not so, it seems. As a result, we find ourselves in a state of limbo for her September start. Tears of uncertainty flow regularly for me, and the anxiety is relentless.
So what of the Ministry’s inclusion mission? Does it include children like my daughter, who has physical and medical needs in addition to her cognitive delay?
All of the equipment required in the classroom (minus the wheelchair, which is our responsibility) has been set in place, we are told. We have become acquainted with her special education caseworker, kindergarten teacher, principal, school board special education coordinator, physical medical coordinator, Community Care Access coordinator and the like.
Pepper's IEP is being worked on according to her abilities and the path we've carved for her with the support of her daycare educators.
Yet it's August and we still don’t have a before-and-after school plan for her, something essential to our ability to work (which for me includes an hour's commute each way).
And the rescue medication recommended for our dear daughter when she has a seizure, and taken under the tongue, has been rejected by the board as a safety issue for the person administering it. A nasal spray, which we need to be trained on, will be used instead.
What happens now? Advocacy, of course. My husband and I don our superhero capes and get our fight on. We fight for the right for our daughter to attend school with your child.
We hope and pray that she is safe, and included, and treated like an equal. We wait for the phone calls informing us of the seizures, of the accidents, of the loss of resources. We wait to see what impact a possible teacher’s strike might have on special-needs programming. And we get ready to fight.
See you in September.
Follow Stephanie on her blog at Pepperlepsy.
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4 comments:
It is a travesty that this is such an obstacle, and sadly only the first in the educational journey for many special needs families. Disabilities cannot be put in a one size fits all bag, and that's what public schools are, in my experience. Anything that's of a shape or size that doesn't fit into that bag is likely not to be adequately addressed. If it happens to be a life threatening issue, which some are, or other very essential issue, I don't even see why some parents chance it. The schools simply do not know how to operate on some very simple issues with less horrible ramifications and consequences.
So, the most important thing would be that the school along with transportation can handle any medical crisis that is an issue with the little girl. There should be no compromise on that because her very life is on the line should something occur that cannot be medically handled. I've seen tragedies in this regard, and many times it's because the families have pushed and insisted that less than optimal safeguards are in place to get some less important accommodations done to get the kid into the program. I'm very close to one particular case where the then little boy should never have been put into a school without medical provisions available quickly. He is now less capable and was afterwards sent to a center an hour and a half away that was the only place able to handle his even more challenging needs.
The problem is that the schools often cannot get someone available that can handle some children's complicated, delicate medical needs. They don't have the money, and they are not going to be able to get it. Some how the disability rules do not provide the funding to address some complex life and death issues that some children face. The parents have to be the advocates there with no compromises, because any can lead to more disability, death even and a terrible trauma for the child.
Winning these battles can be pyrrhic victories when you place a helpless child into an environment where she is not welcome, well cared for, for so many hours a day without someone watching out for her. It's daunting even for parents whose kids do not have such critical needs. It's not so simple as dropping any person with a lot of needs and no voice into a place that will care for him all day or all night without some careful oversight. Just not going to happen most of the time. It's a recipe for neglect as best, and abuse most likely.
Hi Cath,
You've clearly seen a lot and it's had a lasting impression on you. I'm so sorry to hear that. Your comment lit the fear fire in my heart, and raised my anxiety level higher. It's a naturally anxious time for any parent when their children start school. Parents of special needs children in the very least have open channels of communication with a team of professionals put in place to support their child. This is somewhat reassuring. It can be a dangerous journey without the proper care in place. Especially for those who do not know how to access the right information for their situation. By the sounds of it, what you've experienced was traumatic. I can't change anything for you, but I can learn from your wisdom. Thanks for posting. Now, I might need a few therapy sessions and some anti-anxiety medication to help me cope.
Back to school is Tough or any Student but for Students with disabilities it can cause added Anxiousness like who will be there new EA for me I use to wonder would I have the same EA and supports staff I will make see old friends in my new class and make new friends in my class I think if the parents are nervous that rubs off on the child. so don't be nervous. and I suggest talking to your kid about or show her pictures of what to expect on the first day. And if you can tour the school or the route too school. and encourage her to ask question. or how ever she commutates and be sure to be on the involved in schools things like PTA and stuff like that my parents were a huge part of my Schooling that made it a lot easier for me. knowing I had Support and because of that I am a adult now and I am in college. Good Luck.
and getting to know the buss drivers as a kid I use to feel scared riding the school bus because of the fact I am hard of hearing or have a stuttering problem.
HI,
I am in the same boat and am having the same issues! My daughter can walk but is non-verbal and has global delays, she has a very rare genetic condition and there is little information on there about her condition! It is a constant battle. With all my planning and meetings nothing has been done to insure my daughter safe entry into the school system! No teacher yet in place, no support worker (funding) we have been told, it is a wait and see game!
Thank you for putting into words how I am feeling every second of every day! I keep being told it will be ok, but how do they know! My elder son, loved going to school and I was happy to let hin out in the world, my daughter....I'm terrified!
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