Tuesday, April 21, 2009

Our Back to School Welcome




Owen , Dylan and Jake July 2006 before transplant
After everything these boys have gone through going back to school should have been a breeze , or so we thought...
I've talked with the school SO many times , gave them All sorts of Info on ALD , Bone marrow Transplant, the whole nine yards !!! Last year before school started I set up a meeting with the school nurse , Owen's Kindergarten teacher , Dylan's teachers were invited and Jake's, plus the principles. ONLY the nurse, Owen's teacher , and one of Jacobs showed up, everyone else was "busy" BUT , would be" filled in". Then , school started and Owen went willingly the first day , but had separation anxiety then next day.

So we talked to the docs and they said it was post traumatic stress and Owen being only 5 thinks as if the school is like a Hospital , and see if I could walk him to his class. I did this the whole following week and it WORKED !!! Then the principle told me I was not allowed to , so I explained the situation , and still they said no , so I went to the superintendent and he told me I WAS BEING a over protective mother and it was against school policy to walk the kids to their class., AND that they could and WOULD call the police if I continue. We also had a issue with Dylan last year (2007) , he was not feeling well and let his teacher know and his teacher said to him” SUCK IT UP” so Dylan just waited till the next class and ended up throwing up in front of EVERYONE !!! This really angers me , because my kids are good kids who listen and follow directions , they get good grades , like school despite ALL of this and are treated with no compassion , or respect !!!When I called the school and told them what the teacher said , they said the the teacher was a good teacher and I would like him….WHAT !!! No Apology , this was actually the super again. Also a teacher made a point to tell Jacob how many days he missed last year in front of the whole class. Then told my husband when he went for conference and AGAIN when I went to the IEP meeting for Jake. I am fully aware of all the days missed . As I am the one who takes them to all their doctors appointments .

We do have A LOT and they are no fun , with 3 kids having the same illness and having to ALL be checked that’s our whole day at the doctors !!! Dylan also has a teacher this year who doesn’t like to use the microphone they have in the class room , and Dylan did lose some of his hearing due to ALD. Well , Dylan didn’t hear what the teacher said and said what ? To the teacher and the teacher then says “WHAT” I find this so irritating , and it just adds to the bulling , because if the students see the Teachers and staff doing it then it makes it look like its ok. .
I've had a teacher tell me that there was NO EXCUSE for Dylan arriving a few moments late to math class...No excuse? Do these people have rocks in their heads...really. We have a IEP for Owen that requires his teachers to sign a homework journal daily and the teacher have such difficulty doing this simple task. So when I let the principal know , she told me it was an easy fix and would take care of it. I agree it is a easy fix , the teachers could hand off the notebook to each other when the kids switch classes , at least thats what I was thinking. The principal had a better idea...she put another child incharge of reminding Owen to give his journal to the teachers...this was her "easy fix" . Needless to say the buddy helper forgets too. So do I call the buddies mom and complain?

I honestly can't believe this is how a school treats children with a terminal illness. You ALL should be ashamed of yourselfs you lack compassion and understanding
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Here are a few facts you should know ~
Adrenoleukodystrophy - Facts and Information

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