ROB
My good friend Rob wrote this piece over at Pajama's Media and I have so much to say about what he wrote and the comments of others.
It's true for Rob and for me that before we had children with special needs we were not advocates for the cause. I can say I was not. I did not know the alphabet soup that rolls off my tongue now IEP, CP, CCS, HMO you get the idea. I did not stand up and make sure the special needs children at my sons school were being included and involved. So now here I am and I have a child who has needs that are beyond what a normal child would have during a typical school day. I am blessed to be in a wonderful school district with wonderful teachers with a great staff. I have no problems. I am lucky in that respect. I am lucky that Joseph's needs compared to other students are minimal. I know his limitations. I do not ask for or expect the school district or the service providers to do what I should be doing. We take care of his needs (we do not receive any services for him other than Occupational Therapy and Physical Therapy once a week) we do not receive disability or SSI or WIC, welfare, Medicare, Medical and yes we qualify but we meet his needs just fine.
But when it comes to his needs at school even I am hesitant to require teachers or aids to help him. Why should a teacher stop and help him cut the paper, open his pencil box when she has other students to deal with. We have adapted his life so that he can do these things on his own. I do not expect him to attend every function just yet just because it's his right to be there. I know a mom that sent her child who is in a wheel chair on a field trip to the park. He got to sit and watch the other kids play. Yes he had the right to go. Yes the fresh air was nice but I think the boy would have enjoyed doing something else that day. When does inclusion become an even more painful reminder of what you are not capable of doing instead of including your child in activities he can do and do well and give him that. She does not agree with me. We don't talk much any more.
Yes the world is your oyster. Yes you can do anything you want or set your mind to. Ok I get that. But it's up to me to help make that happen for you. I will make sure his needs are meet at school but I do not expect the school to go move mountains for me. I will go around it. Here's another example. We live 1 mile from Joseph's school. His classmate lives 1.5 miles. His classmate takes the bus to and from school everyday. Transportation has to be offered to special needs kids. Ok. I get that since he does not live in the boundaries for the school he currently attends bus service must be offered. But give me a break it's 1.5 miles. They offered us bus service and I said No. I am at the school to take Derek there I will take him too. This mom said I was crazy said it's a service and her son loves to ride the bus and I should take it. sigh.
Yes but the bus costs the district and tax payers money. She does not agree with me she wants all that he has coming to her. They tell me I am crazy but I think I am doing just fine. I think I am showing my son that world is not going to hand you anything you want you are going to have to find a way to make it happen and you will.
I encourage you to read what Rob has to say. I encourage you to read the comments.
I encourage you to hug your children who are special and wonderful and perfect. I will go hug mine too he's special and wonderful and perfect too, just like Schuyler.
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