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View Full Version : School, MPS, and ERT?



Tami
March 9th, 2004, 03:59 PM
Ok, I was reading this and it hit home for me! Jacob and Sami have this same problem. Jacob looks capable of doing every thing other kids do but has such a hard time at school. Because of his breathing problems and contractures, school has been very hard on him. His headaches have been so bad and due to the sleep apnea, he is not as focused at school as he should be. I had many teachers complain about him not focusing. When I try to explain about MPS they just don't get it because he looks normal. I have to laugh because, to the teachers he look fine, but to the other students he's different and he is constantly being pick on. I'm hoping that now with the enzyme that this school year will be better. Any advise?? What about missing school weekly???
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Jennifer writes:
But it wasn't till I was 12 that they figured out it was MPS1. See I am not severly affected and from the looks of me seem to be normal so it took a while to pinpoint what was wrong. I think that made school that much harder because I knew I was different from the other children. I couldn't paly the same sports and do P.E. But I looked perfectly capable of doing these things and kids just didn't understand that I couldn't. Even I didn't understand because at the time I didn't know I was sick. So in the middle of Junior High I went on home study and finished school 2 years early!

Steve Holland
March 14th, 2004, 01:57 AM
I am aware of other MPS kids that went to a home based self study program to avoid the issues in high school. Our kids also look very normal, are in regular education classes, but are not at grade level and cannot do the same work as the other kids, especially with missing one day a week of school. We have communicated their situation to the teachers through AARD meetings.

We have also communicated that on treatment day our only expectation for our kids is to receive their treatment. We will not be making up missed class work for that day. Also, after spending hours with the kids helping (in many cases doing) their homework each night, we met with all of their teachers and implemented a no homework policy. We decided life was too valuable and too short to waste it doing homework - especially since it would most likely make no difference in the end. We did not want to look back and see the tearful, stressful homework memories. Our weeknights have really improved since we took that stand.

Steve

Sharon Cochenour
March 14th, 2004, 10:11 PM
Good for you Steve. I like the no homework rule. I get a few comments about Andrew missing school for IVIG treatments and he is only in pre-school. I have let it be known that I don't care how much school he misses, his health is my first priority. Sometimes it makes me mad because they will come back with " he looks OK". What is that suppose to mean unless they have x-ray eyes and can see heart and lung damage which they are forgetting about. Anyway, treatment days are only for treatments, McDonald's and watching DVD movies. No stress for Andrew or Mom.
Sharon

zacheys mom
March 16th, 2004, 04:43 PM
Hi everyone.
Last year was a night mare with the state of Oregon eduction calling me and sending me letters about Zach missing school so our Dr. wrote a letter and he stated that Zach will only atend school four days aweek for his school years.
Also Zach has home work but only spelling,and reading.
Zach loves to read and has meet his AR reading goal for the year.
Also he does all school work on a computer. He loves school and is learning alot from the kids in his class.
Shaun

zachiesmom
March 17th, 2004, 05:00 PM
Hi all,
I honestly don't have much to add other than to tell you all that I'm so glad that your children are getting the treatment they deserve and more importantly and OBVIOUSLY the love you all give them!!! :kiss:
Keep setting those schools straight end keep enjoying the HAPPY times!!!!!!

:) sincerely, Brenda