Last summer, before we knew anything about Rett Syndrome and assumed that Lu would just "catch up" as the neurologist suggested, I started considering homeschooling her. That is important to remember throughout this post...that I had some of the beliefs that I currently do, prior to the knowledge of such an all-encompassing disability. My thoughts and feelings regarding public school are as follows: I believe it to be extremely boring, first off. I have never, at any point in my 18 total years of education been able to say that I enjoyed it, but I love learning new things! Secondly, everyone learns differently, everyone doesn't always want to learn the same thing, and there is really not a lot of wiggle room in the public school system for "difference". I suppose I mean within the regular education curriculum, but I would say even in special education and eventually, that is where I am going with my thoughts, to discuss the special education system. Third, herding the sheep into a drab building to sit quietly in rows of desks, for SEVEN long hours each day, in order to make them behave in a way society feels they should...nah! Not for Lu I don't think.
Here's the thing...sans Rett Syndrome, I still wouldn't want Lu to feel like she had to be a certain way, do certain things, act a specific way. With Rett Syndrome, she just acts her own special way and that is how it is, and I don't believe in trying to pigeon hole her into trying to act in ways that are impossible for her. Sit still, be quiet? As if! And why should she? However, my initial purpose for this particular post is to express my frustrations with the special education system and the public school system as a whole. I am a member of a Facebook group called "My daughter has Rett Syndrome" and one called "Home Educating My Child With Rett Syndrome". A lot of the families on the home education site, from what I have read, eventually decided to remove their daughter from public school because no one would listen to them, their daughters were not receiving the education that is their right, and they were too worn out to fight anymore. In the other group, I often read posts from parents that are currently still putting up a fight and these posts are sadly filled with anger, frustration, anxiety, and despair. Guess why...because nobody listens to them. I have read several times where the school has removed all academic goals from a girl's IEP because they felt she wasn't capable of meeting them.
So, the two main things that I struggle with are why should we have to fight, and will anyone believe in Lucy like they need to and like she deserves? Now, my goal is almost never to be controversial and absolutely never to hurt anybody's feelings so allow me to make some declarations. First, certainly homeschooling is not for everyone. Fortunately for me I have four years of special education credits and a final bachelor's degree in Rehabilitative Sciences. I have taught (briefly and miserably) in public schools as a block student, I have been an Early Intervention special instructor, and feel confident and motivated in the possibility of educating Lucy myself. I am also fortunate that my husband and I are financially secure enough that I don't have to go to work. So that said, I totally realize that some people want or have to go to work, some people have not had years of education classes, some people, don't want to home school, and some people have faith in public education. My purpose is not to say anyone is right or wrong, it is just to voice my feelings. But even now, at the age of two, I see people underestimating Lucy, while I am standing right there. I don't have faith in other people to have the amount of faith in Lucy that is needed for her to be able to succeed. I just don't and maybe I am a little bit of a control freak about that, but oh well.
So the trick is figuring out ways to help Lucy let us know what she knows. I am already seeing how difficult that can be and how far out of the box you have to think to get things accomplished. So my second thought is that why should it be so hard to get "professionals" to do things the way we want and need them to. They might be professionals, but as I have said before, we are the experts on our children. We know what is best for them and how to get the best out of them...but people don't always listen to us! I feel like what will be best for Lu is just to skip the whole headache of people not listening to me and doing what I ask, and just doing it myself to begin with. And I have not just heard these types of complaints in regard to feeling that they are not being heard from Rett parents! I have a friend whose son gets special Ed services and she basically enters each IEP meeting ready to do battle because the school keeps trying to pressure her into sending her son to the Life Skills class...which is 45 minutes away!
I guess this was a little bit of a ramble and a rant, but it just shouldn't have to be so hard to acquire the best education we can for our children. Things in life are already tough enough for them (and us), why should we have to beg and plead for what is rightfully theirs by law and also have people understand them and believe in them? There's no answer, it just is what it is.
Oh Julie! How I wish you could have met my Aunt, Anna Mae Goodman, from Morrisdale! She would have understood your post completely and would tell you, were she able to do that, to go with your gut instinct and fight, fight, fight!
ReplyDeleteMy aunt's only child was born in February of 1957 and early on, it was obviously she had severe problems. The main one though -developmental disabilities caused mainly by the Rh factor. At the time my cousin was born, there was no treatment for mothers with RH factor and they know now that after any delivery or miscarriage, the mother should be given a shot of Rhogam -a substance not yet discovered I believe, back in 1957 and my aunt had had a miscarriage about a year or 2 before her daughter was born.
People told her to put Jane Ann in an institution, not to worry or work to try to get therapy for her because she would never walk, talk and certainly never be able to do anything. That was what my aunt heard. What she did is exactly what you are proposing for Lu.
No, my cousin never achieved any degree of normalcy in terms of walking, talking, communication and the like. When she was about 15 years old, the state passed the law that a free education must be available for every child and so, from age 15 to 21, Jane Ann went to school up at the CIU Unit and in defense of public school/special ed schooling, Jane loved every bit of time she spent there. She especially loved being around other people -her peers -and, at age 21 when the law deemed she had had enough education because that's all they would cover for, she was back home and my aunt worked with her at home, trying to help her learn little things, yes, in the "normal" scheme of things but these accomplishments for Jane were major deals, for sure!
Call me sometime, if you'd like to learn more about what my aunt did for her daughter. Very similar uphill battle she had, just as you feel you are facing down the road too with Lu.
My number is 814-345-6530.
Peace,
Jeni Hill Ertmer