It has been almost 3 years since Andy was diagnosed with Celiac Disease. During those 3 years I have been most fortunate to not have too many problems with his diet. His schools and daycare have always taken it very seriously and I have always packed all of his food and provided bulk snacks for special occasions. In the past, they have either called before feeding him something or only fed him food provided by or approved by me. And Andy is very good about questioning what is set before him.
That is not to say that Andy has never had an infraction and consumed gluten (or dairy). Most of the time it is minor and it is something that I, myself have given him - either because I did not read the label as closely as I should have and missed something or because it was previously safe and I missed that they changed something in it - or it had hidden gluten and I neglected to call the manufacturer to check.
So I was quite surprised when Andy started showing signs that he had consumed gluten and even more surprised when I tracked the source down and found out that it was a muffin given to him by a paraprofessional (aide) assigned to work with him at school. But I think I handled the situation appropriately (I always worry if I am too much of a bitch about these things or too soft) and I feel pretty confident the situation has been resolved and won't happen again.
Here is the story from the beginning:
School started the day after Labor Day. The week before school started, the school had a meet and greet day where all of the kids come to school and meet their teachers and get aquainted with their new classrooms. Dan and I took Andy to that and took along a list for the new teacher of the foods that Andy could and couldn't have. We chatted briefly about it. Although I was offered a private time to bring Andy to see the classroom and talk with the teacher by the principal I turned that down and only attended the meet and greet. We were short staffed at work and getting out early for the meet and greet was all I felt I could handle.
In the written letter I had given the teacher with the list of foods was a request that I be kept informed of all food related activites in the classroom so I could provide alternative foods for Andy and an offer to send in bulk snacks to keep on hand. I assumed the letter had been read. On the first day of school I learned that the paraprofessional assigned to Andy's class was one that had worked with him the previous year in Kindergarten. I was thrilled. She was very good with him.
We continued to be short staffed at work. I sent Andy's lunch in daily with him and he has a button on his lunch box that says "I am on a special diet and can only have foods brought from home." With being so busy at work I overlooked the fact that it was a new school year and the teachers are overwhelmed with getting to know all of their children and I did not persue talk about the diet any further. I assumed everything was OK. I let my child down.
So we get through the first two weeks of school and I think everything is going well. When I picked Andy up from daycare on Friday (which I normally do not do, Dan does), his daycare teacher tells me that she thinks something happened at school because Andy was brought out to her by his PE teacher and it appeared that he had been being difficult - something about reading - and he had a meltdown - but she wasn't sure. That was sign number 1 of a gluten infraction - but the signs are easy to miss - he has plenty of meltdowns that have nothing to do with gluten.
I read his school communication notebook when I get home and there is nothing in there about an afternoon meltdown over reading. There is a note from his para saying that they had celebrated a birthday at school today and could I please send in some fruit snacks or something to keep on hand so he can have a treat in situations like this? It did not state that they had given him anything to eat.
He continues throughout the evening on Friday to fly off the handle very easily and lack self confidence. This was sign number 2. But again - nothing to really point to gluten. Dan does homework with him every night - even if there isn't any from the school. This time there was some from the school - luckily we had all weekend to get it done because he was not being very cooperative - couldn't even get him to try. All he would say was "I can't".
Sign number 3. The diarhea begins. He asks me to come and wipe his butt and I notice that his BM's are much softer than normal and ask him what he has eaten - how much fruit had he had today? (this kid loves fruit) I assume he has just been eating too much fruit. But 30 minutes later he is in the bathroom again and so it continued until bedtime. At this point I am starting to suspect he has consumed some gluten and I question him on what he has eaten that I didn't give him and he informs me that Mrs. C gave him a muffin - but that it was tiny and had no frosting on it. I wonder where she would have gotten a gluten free muffin from and question him further and he says he asked her if it was OK and she said it was. I decide he couldn't possibly be telling me the truth and start reading labels on everything in the house he has eaten. Mrs. C worked with him last year and certainly knows his dietary restrictions.
Signs number 4 & 5. He starts complaining that he has "growing pains" that his bones are hurting and his skin is itchy.
Signs number 6 & 7. He wakes up in the middle of the night terribly congested and with a cough full of phelgm. It would be easy to think he is just developing a cold, but with all of the other signs, it is pretty evident at this time that it is all related to the gluten.
All of this continued throughout the weekend. Sign number 8, the rash didn't appear until Tuesday - something it happens that way - he is itchy for several days before you see anything physical.
By Monday morning I was pretty sure that I wasn't going to find the source of the gluten this time. I wondered if he snuck something from another child - which he has never done before, but there is a first time for everything. But I kept coming back to the fact that he said Mrs. C had given him a muffin. I still wasn't believing it - if I had I would have gone into the school and talked to her - but I did write a note in his notebook asking if she had and if so, what type of muffin was it?
Monday evening I rush home from work so I can spend a little time with Andy before going to a PTA meeting. I read his notebook and find a note from Mrs. C. She had given him a muffin - it was a regular, gluten laden one - and she was sorry. I was stunned. I went to the PTA meeting and I actually sat right next to the principal, but I didn't say anything. It wasn't the time or place - and I hadn't fully processed it yet. Had I said something then I probably wouldn't have handled it as well.
I spent a pretty restless night on Monday wondering how best to proceed. I had to make sure this didn't happen again. But on the other hand I didn't want Mrs. C to get in trouble - she is very good with Andy and she did admit her mistake and she did apologize. I just want to make sure it doesn't happen again.
So I get up early on Tuesday as usual (I'm an early bird, always up at 5am). I print out information on Celiac Disease to send into the school and I wrote a long e-mail to the principal. I copied his teacher on the e-mail so she would know what I said and not feel I was going over her head - I just felt this needed to go up a level. If an aide that was really familar with Andy could make this mistake, what about the specialist that only spends time with him once a week or less? I needed to know that everyone who works with Andy knew about his diet. I needed some assurance that this would not happen again.
In the e-mail I tried to just lay out the facts. What had happened, what the long term effects of consuming gluten are, the symptoms that Andy had been experiencing and how unacceptable it was that he should have been given gluten by a staff member. I made it clear that I was not out to get anyone and an apology had been given but I needed assurance that it wouldn't happen again.
I feel I got that assurance. I just love our school and our principal. Somerset Elementary and Mary Bowman are the greatest. Mary called a meeting that day with all of the staff that works with Andy and she went over it with all of them. They all understand the importance of this. She then called our home and spoke with Dan and apologized to him. When I dropped Andy off at school on Wednesday morning I got apologies from his teacher, Mrs. C and the principal. I sincerely feel that they have taken this seriously and it won't happen again. They all feel bad.
It was a wake up call for all of us. Next year I will make sure I make as big of deal of his diet at the beginning of the school year as I did when he started Kindergarten. As a mom of a child with celiac, you just can't ever let your guard down.
Andy is doing better. His only lingering sign is a small rash and a cough (which is getting better daily). Gluten can take several weeks to leave the system. We are lucky that this appears to be working it's way through his system fairly quickly.
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