The School is “Fixed”

Posted on 18. Jun, 2007 by Jillian in Education, Glycogen Storage Disease, Glycogen Storage Disease Dogs, Glycogen Storage Disease Type 1A, hypoglycemia, research, Schools

Anyone who has read previous posts on Starchwars may remember the difficulty we have been having trying to get our oldest son appropriate services at his public school. For him, this would include an aide assigned specifically to him and trained to recognize and treat hypoglycemia as well as administer his cornstarch “medicine”. The school was very adversarial and condescending at all the previous IEP meetings. I couldn’t drive by without my stomach doing somersaults. They simply didn’t believe that GSD is a real disease that needs to be treated as such because our kids look and act so “normal”. The head of special services for the school district had officially denied our formal request for an aide and as a result we felt it unsafe to send him to school since mid-March.

We told Dr. Weinstein (www.glycogenstoragedisease.com) our woes and he offered to call the school on our behalf. He had a 20 minute conversation with the principal on the phone, came back into the hospital room and said “I just spoke with the principal. He’s a good guy and very reasonable. You won’t have any more problems with the school. I was ecstatic- yet slightly skeptical.

We had our son’s IEP meeting the following Monday. We didn’t have ANY problems with the school. He has an aide assigned to him and one other child with “redirect ional” needs. In retrospect, I think this arrangement will actually be better than a one-on-one aide. I hope it will make my son feel a little less conspicuous, while at the same time providing adequately for his needs. We will also be having a “training” meeting shortly before the new school year begins. The principal suggested that he and several other back-up people including the secretaries be taught how to administer cornstarch, test for blood sugar and how/ when to administer glucose.

For the first time in months I was able to drive by the elementary school and feel calm instead of nausea. How grateful we are. Thanks to Doctor Weinstein, I am no longer the “psycho mom whose kid can’t have ANY sugar is being treated with a home remedy of cornstarch of all things!”