GSD Vs. Small School Districts

Posted on 05. Apr, 2007 by Jillian in Education, Glycogen Storage Disease, Glycogen Storage Disease Type 1A, Schools

Our eldest son began preschool at the local elementary school (commonly referred to as head start) due to developmental delays. In the beginning of the year, I held a meeting with the school staff to discuss his Individualized Education Plan (IEP). I had NO IDEA what I was doing, and I write this post not only to help others as uninformed as I was, but also as a plea for help in cleaning up the mess I’ve made.

At the first meeting I was my then 4-year-olds only representative. Sitting around me were the principal, pre-k teacher, school psychologist, speech and language pathologist, school nurse, the occupational therapist and a couple other people all representing the school. I assumed (I believe incorrectly) that we were all on the same “side” for my son. He is my oldest son, so I had never done this before and comparably they have never done this for a child with GSD before. They smiled sweetly at my requests and suggestions, asked about GSD, but their eyes glazed over at “rare metabolic disease” and only caught “must have cornstarch every four hours” and “no sucrose, fructose or lactose diet”. Perhaps I down-played GSD a bit. It is, afterall, a very treatable disease and as long as it is treated aggressively children appear “normal”. Which is it’s best and worst characteristic. Because my boys are all so happy and relatively healthy people have no idea how much work it is just to keep them from dying- but I digress.

At anyrate I left the meeting feeling my child would be safe in the school. The caring teacher would not let him eat any foods that weren’t either sent to school or pre-approved by me. The school nurse would be there at all times to give him cornstarch, or in case his g-tube fell out or there was some sort of medical emergency she knew “exactly what to do”-she’s a nurse afterall. There was an aid in the classroom and only 8-9 students, and none that required extensive attention this year. I would bring him to school each morning after breakfast so as not to be tempted by sugary cafeteria food, and he would ride the bus home. If there was an emergency, I would be called immediately and I live less than 3 miles away.

All was well until early December when the teacher called and said “The nurse didn’t come to give your son his cornstarch” (he was already 45 minutes late). “Do you still want him to ride the bus home?”. I was at the school in 3 minutes and tested his blood sugar. Thankfully, he was still at 69. It is my understanding that 70 is the magic blood sugar number. Anything below that and you are considered hypoglycemic. If a person has frequent or many hypoglycemic episodes, brain damage is possible and developmental delay probable. When I arrived in his classroom only my son, and the teacher’s son (a typical peer in the pre-school) were in the room. I tested his sugar, gave him a pixie stix to boost his blood sugar, gave him his cornstarch, got his coat and back pack on, and waited another 10 minutes for his teacher to finally show up so I could ask what happened.

Apparently the school nurse was sick and didn’t come to school that day. Another school’s nurse had come the day before to give him his cornstarch, but she just didn’t show up the second day. The teacher had been in IEP meetings all day, so she didn’t know what had happened until the school day was over and the aid who had been running the classroom mentioned it to her. Thankfully, she called me immediately. When I asked why the nurse hadn’t been missed earlier in the day I was informed that she NEVER comes to school before my son’s 10:00 feed. She is in charge of several elementary schools in the district, and can’t be everywhere at once.

So, three strikes in one incident. The nurse is NOT there in case a g-tube falls out, or he becomes hypoglycemic, AND they missed a cornstarch feed. At least the teacher called and was somewhat appologetic, but he was still left alone for at least 10-15 minutes when he was hypyglycemic and in need of medical attention.

I was nine months pregnant at the time with GSD kid #4, very upset, scared, and angry- not to mention hormonal. In retrospect perhaps I should have said more at the time, but I was concerned that if I started, I wouldn’t be able to stop, and frankly I can’t trust myself when in that state to be reasonable. So, I let her know that it was completely unacceptable, that I didn’t blame her, but rather the nurse and I documented that it had happened. I called my service coordinator who agreed that it shouldn’t have happened, but “what can we do about it now? At least they know not to do it again.” I was too overwhelmed, and proud to either know what to do or ask for help.

After I had our last baby was born, our son went back to school. However, our CNA was on maternity leave herself, and I didn’t have any practical way of taking him myself after breakfast- I had two kids to transition off feeding pumps every morning not to mention a three year old who intensely wanted to go to school too and we have pretty cold winters here. Not plausible. The best I could do was say “Don’t let him eat anything I don’t send” and pack breakfast for him to eat at school.

Recently, my son came home from pre-school with a very cute letter “R” covered in raisins. We didn’t find it in his backpack until after the school day was over so I waited until the next day, took my son and a home health aid to school instead of letting him ride the bus, and asked the teacher’s aid if they knew raisins were a fruit and bad for him. She said, of course, “But we made sure he didn’t eat any at school.” When I asked where the teacher was so I could make a game-plan with her and decide what was and what was not OK to tempt my now 5 year old with, I was told that she had called in sick. When I asked to speak with the substitute so I could make sure she wouldn’t feed him, I was told that they had asked for one, but she hadn’t shown up yet. I left my aid at school with my son for the day, and found out that a substitute never showed up.

After leaving several messages for the principal which were not returned, I asked my sister (an SLP with extensive knowledge of the school system) to come with me and talk to him. He saw us almost immediately. We tried to explain that raisins are bad for him, and he just looked at me like he’d never heard it before. My sister tried to use the analogy that it was like using an asprin pill to trace the letter “a”. One asprin won’t a kid, but how many will start to cause damage? He called it a rediculous analogy and condescendingly added that “It may look like just an art project, but they’re really learning valuable fine motor skills.” I know that, but why couldn’t they use red ribbons, or rocks? We explained that the raisin wasn’t the real problem, but the miscommunication about what my son would be exposed to at school. We didn’t want the teacher to get in trouble, we just wanted everyone to be on the same page. He said there would be no more food in the classroom until we could all agree on a plan at a meeting- probably next Tuesday. He would get back to me.

After that, I sent an aid with my son every time he went to school. It was necessary anyway because we were unexpectedly “dropped” from our pediatrician’s care and the school nurse no longer had authorization to give him cornstarch.

The next school day, according to my son’s C.N.A., the teacher talked to everyone who came through the door about what happened when she was out sick. “She said one raisin could kill him. The principal chewed me out….” The response to one of these from the schools SLP was “Well, he is on your side, right?” “Of, course, but still!”

Then came our week with Mr. RotaVirus (see previous post). I never heard back from the principal, although I called once or twice to find out a time. Tuesday morning I answered the phone to hear him say “Where are you? We’ve already started the meeting.” I explained I didn’t know about the meeting, I had a child in the hospital, and the best I could do was drop off a pamphlet I had about GSD. He was short and said that it would be helpful, obviously believing he had told me about the meeting. I checked my caller ID to make sure I hadn’t just forgetten the conversation, but I didn’t have any phone calls from the school that week.

We finally had a meeting to discuss what is and is not appropriate for him at school. The superintendent of Special Ed was there as per our request. My husband also decided to miss work, and join the pow-wow. Overall it was a COMPLETELY different experience. With my husband and the superintendent there, I felt much more comfortable offering opinions than previously done. After speaking with another, very knowledgeable, GSD mom, I decided to ask for an aid to accompany my son to school. That way, the over-worked nurse and teacher wouldn’t have to worry about cornstarch, making sure he didn’t eat non-GSD friendly foods, could watch for hypoglycemia, etc.

I was told that it wasn’t practical, that they rarely ate foods, that there was ALWAYS a substitute for either the teacher or the aid, and that they had already re-done the lesson plans since the beginning of the year to accomodate the GSD diet. There were plenty of saftey nets. They also mentioned that children who have an aid assigned to them also tend to be much less independent. A valid point. It was made clear to us, that if we asked for an aid then, that our request would be denied. I only have the staff to send someone with him to school twice a week, and they were not happy about that prospect either.

I would like to add that of the 6 times in a three week period that one of my son’s aids accompanied him to school either the teacher, or the aid was missing twice. The day he missed his cornstarch, it was only the aid in the classroom. No substitute.
So, my question for you the reader is… Am I being unreasonable to ask that an aid accompany him? Will it really do more harm than good? Would an aid they supply simply forget cornstarch, and not catch hypoglycemia anyway? Do you believe that they will stick to a GSD friendly diet the remaining six weeks of school? Is it worth the fight now, so I can ensure that not only my eldest son, but the next three will be treated as they should at school? Is it unreasonable to expect perfection from a school district with only one high school, one middle school, and four elementary schools?

Believe it or not, this IS the abridged version. If you actually took the time to read this post, you must have an opinion. I really do want the truth. Please help.