How to Get School to Enforce Your Child's Diet?

Submitted by Jessica Clark on Fri, 12/05/2008 - 07:42.

School Issues & Learning

Hi. I have found it very difficult in the past to get the personnel at my son's school to comply with the dietary restrictions that I have set in place for him. He has autism and has a tendency to have impulse control problems, like bolting.

He is only supposed to eat what I send to school because when he eats certain foods he has seizures and stims. He also has more difficulty paying attention. All of the "talks" that I have with the school have failed to prevent them from allowing him to eat foods that cause his seizures. They seem to take on the attitude that if his food problems don't result in an immediate allergic response, then it isn't a big deal.

Often, they let him eat foods and don't even tell me. They leave candy all over the place and the first chance he gets he "steals" food. Has anyone had to deal with this type of problem from their children's school? If so, what do you think was an effective way of helping your child's school to "care" more? He would make so much more progress if everyone would be working as hard at his diet as I am!

Any input would be greatly appreciated,

Jessica Clark

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Hi Jessica

Submitted by Arlene Martell on Sat, 12/06/2008 - 08:18.

My son Adam was on the ketogenic diet at school and it was crucial he did not eat anything I did not send. His teachers were really good about enforcing this and I never had a problem. When I was having trouble at school with behavour, his pediatrician actually came to the school and sat with the teachers explaining Adams condition.

It sounds like you need to take this a step further and this is what I would do. Have your doctor write a short note to the school - then set up an appointment with the principal and teachers together. Let them know a copy of the letter is also being sent to the school board.

Secondly, you can see if someone from your local autism society can come to the school and talk to the teachers. This may be an option. They will also make sure your child has a proper IEP (Individual education plan) in place. The plan can cover dietary needs as well and the teachers must abide by it. This is really important to make sure his needs are being met.

I don't think it is they don't care, they just do not realize the urgency so make it more urgent!

Arlene Martell (Mom of Adam above)
Publisher, EpilepsyMoms.com

Use the IEP

Submitted by Amber Kane on Tue, 12/23/2008 - 18:34.

I'm not sure where you live, but does your child have an IEP? If so, you can advocate and have this need listed - this is not the same as having a note on file with the nurse or cafeteria, but is instead a legal and binding contract, which they must follow (lest they be in non-compliance). If you need any advocacy help, let me know; be glad to assist. I'm also a member of COPAA; council of parent attorneys and advocates, so I can put you in touch with someone closer to you if you prefer (I live in NY). Good luck! Amber Kane

What Do You Do When The Diet Is In The IEP?

Submitted by Jessica Clark on Sat, 12/27/2008 - 20:40.

Actually, his diet is in his IEP. The school feeds him what I send to school, however, they don't take enough precautions to ensure he doesn't grab other kids food that is laying around in cups and bowls, etc. He is in a large room with individual cubicles where many kids receive ABA therapy, and they always have candy and treats laying around to reinforce the kids with.

I don't know what to do to help encourage the school to not leave food laying around where children with medical problems and impulse control problems can easily reach it. I don't think schools should be allowed to feed children as much junk food as they do. Literally, they have huge bags of M&Ms, cookies, and other stuff just laying around for anyone to stick their hand in.

I think at first, a lot of the paraprofessionals thought that he didn't have problems from eating certain foods because they couldn't tell a difference, so they wouldn't enforce the diet all the time. When he eats something he isn't supposed to at school, they don't even tell me. The reason I know is because he usually comes home doing his "tics".

They are afraid to tell me when he eats something, because I think they are worried they aren't doing their job. The therapists he has at school currently are supportive of the diet and are very strict and careful about watching him to make sure he doesn't have any infractions, luckily.

The only reason they are supportive of it is they work with another child who is on the diet and they can tell a huge difference when she is on it versus when she isn't. I appreciate your willingness to help, however I have been through so much with the school I feel like I've already been through several legal battles.

At this point, it comes down to the individual responsibility of the therapists that work there.

Jessica

You are right

Submitted by Amber Kane on Thu, 01/01/2009 - 18:08.

Sigh... That is a tough one indeed and, you're right, it does come down to each person being diligent. I'm not glad to hear you've had battles with your district, but it is nice to hear of someone who has advocacy experience! I bet this happens more often then I realize because, as you say, parents might not be informed out of fear of consequences...

I can tell when my son has had chocolate b/c his nose is stuffy. A few hours later the non-stop, stimulatory laughing begins and I want to find ear plugs b/c it takes hours to stop!

Ditto for my other son - if he ingests gluten he has a near instant reaction that starts on his skin (blisters) and it simply gets worse as the day goes on. My middle schooler has vending machines in every hallway at school.

This is a big issue for us, since 'mom' cannot be there to ensure he doesn't eat or drink something he shouldn't. He's 14 and this is a tough year, diet included.

Thanks for your reply and sorry I wasn't more helpful! If I encounter anyone else with this experience or something comes to mind, I'll let you know. If you have any progress and can post that, I would love to know how things work out, so I can spread the word to other parents.

Happy New Year to you and your family! Amber Kane

Letting The Child Choose

Submitted by Jessica Clark on Mon, 01/05/2009 - 21:01.

At some point, a child has to be able to decide for him or herself that, "I don't want to eat this food because when I eat it I have horrible problems."
When my son acquires more language and language comprehension, I am going to work actively to try and include him to become actively involved in his diet, including preparing food and paying attention to the type of reactions he has.
I want him to understand that the whole purpose of eating is to fuel your body--if the fuel you put in your body causes you problems, then you shouldn't want to eat it.
I know a little body who would have stomach problems after he ate something, so he eventually he stopped eating the foods that triggered his problem. He would even turn down friends who offered him these foods.
Hopefully, my son will either outgrow his need to be on a diet, or will reach a point when he will develop enough understanding to have a strong sense of self-control.
I can hope, at least...
Jessica Clark