is anyone else having issues with their sons' school just not getting it? im not looking for a school that has the best test scores, smallest class size or even some amazing college prep courses. i am simply looking for a school that is ACCESSIBLE to my son, KIND to him, and COMMUNICATES with me. he is currently in 4th grade and will be going into middle school next year. this has been a horrible year, his case manager actually threatened to take away his scooter as a punishment! ( how about i remove her legs when she pisses me off??) austin was made to watch his classmates particiapate in numerous activities held in a gated playground full of woodchips that he cant drive through. and i can not even begin to describe the ways they are not following his IEP and meeting educational needs. his little brother max has duchenne also and is in 1st grade, we are having as many or more issues with him, all of a sudden he is a discipline problem and forced to sit with his head down on a table daily for playing around...
i want to scream at the staff, i hate the way they treat all the kids, but my concern is mine. i want to say to them " do you realize my kids have a terminal illness? do you know austin may not live to see graduation?' my question is, why bother? should i pull him out of school? he went on a visit yesterday to the middle school, and couldnt stay with his class because nobody was available to operate the lift for him to get up 3 stairs to the cafeteria. im so fricking angry. i could send him to some fancy private school, but the sad part is, im not sure i care that much about how hard he works in school. he has learning disabilities, i want him to have functional reading and math, and lots of FUN and FRIENDS. he has a few good ones, so he wants to stay with them, i love his aide, she does her best given the crappy staff she has to work with. i could home school him ( my younger son max has been asking me to take him out of school all year, he cries every day.) but i have a baby at home and twin 4 year old step kids here often, also im concerned about the social piece of it,austin is really social and wants to see friends. i guess im just so angry and not sure what to do,uhhggg. sometimes people make life so much harder than it needs to be. not only am i fighting this disease, and trying to take care of the kids, the house and ( sometimes) my husband and myself, im always fighting with people who just dont get it.

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Comment by terri ellsworth on February 15, 2010 at 5:50am
Hi Jenn, Just read an old blog of yours regarding school issues. Yesterday, Sun. I replied and sent a very lengthly note to a mom having issues at school relating to behaviors--I will let you look for it. But do you have and IEP and an aide at school with a mobile therapist who comes to the house--this has helped us tremendously. I had to threaten lawsuit in my district and that is when they take you seriously. Unfortunately, until you mention lawsuit they will be passive. Things have been smooth for the most part for the past two years. Billy is nine and in 3rd grade. All children have rights and our boys have 100 times more than the healthy child. Hope this helps a little
Comment by jenn on July 8, 2009 at 5:33pm
emma, more power to you for doing it! we live in a small town, we'd have to travel to reach other school groups. at times i feel it would be best, but with 5 kids im afraid i may go crazy. we're going to give it a try with two new schools next fall, i feel good about the staff i have met so far... fingers crossed.
Comment by Emma Stirling on July 8, 2009 at 4:26pm
Dear Jenn,
We have taken the plunge and are home schooling our 6yr old ( he has becker md) as we went through 2 schools in his first 2 years of school. They just dont seem to get it. Do some research in your area and find out if there are home ed groups they are a great thing and the kids have a BETTER social life as they can meet up any time and do fun educational things together it is tough but worth it! Wish you all the best what ever you do, it sucks and we shouldnt have to fight to get what our kids need.
Em x
Comment by jenn on May 31, 2009 at 6:47pm
you are right, since i posted this blog i have received many apologies, from the superindendant and principal and my youngest son max has been offered a spot at a much nicer district school. the special ed director also asked me to do an inservice with staff at both schools to talk about kids with multiple handicaps, and basically how to treat kids...i guess all of my complaints are finally making an impact.
Comment by Veronica E. on May 31, 2009 at 1:06pm
My little one is only 1 and obviously not in school, but it sounds to me like that school is doing a horrendous, horrendous job, and probably breaking the law. I suggest you post this on the discussion forum -- the knowledgeable mams there will be able to give great suggestions, I'm sure!

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