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PostPosted: Wed Nov 09, 2005 12:24 am 
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Joined: Sat Oct 01, 2005 8:55 pm
Posts: 412
Location: Vancouver, BC
HI!

I am the mom of an eight year old with peanut allergy, and I am taking college courses to be a Special Education Assistant in the school system. I am almost finished and I have to do a special project this term. I have decided to write a paper for parents to help them deal with the schools in setting policies for kids with anaphylaxis. I am writing it in response to an Asthma, Allergy Information Newsletter (the one that came out this summer) that had horror stories about dealing with the schools and other parents.

This is where I need your help: Could you write to tell me (on this forum) and tell me what your experience has been.

My position is that it is ridiculous to expect us, as parents, to set policies for schools on health issues. I believe the schools need to be asking allergists, doctors and other heath care professionals what is necessary to keep our kids safe, and then they should base the policies on this information. Parents of children with other health issues are not expected to come in and train staff, provide resources, ensure that the school is doing what it is responsible for (creating a safe environment for ALL students). They have school nurses who do everything necessary. Why is it different for us?

I believe that the current policies are more often a result of the parent's ability to be an effective advocate rather than the actual safety of the child concerned.

Please write and tell me of your experience, both positive and negative, and how things could have been made easier, or what made it good. What resources have you found most effective? Etc., etc., etc.,

I am also trying to get Sabrina's Law in place in BC, so I may use some of this info in the future to try to persuade politicians, policy setters

Thank you in advance for your input,

Pam


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PostPosted: Fri Nov 18, 2005 12:06 pm 
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Joined: Thu Sep 22, 2005 11:39 pm
Posts: 1141
Location: saskatchewan, canada
I don't have any experience with the public school system yet, my oldest daughter is in preschool. The preschool she attends is privately owned. They were a 'nut free" school prior to my child enrolling. I was the first parent to really explain allergies, cross contamintaion, and how other peanut eating kids can spread it around and contaminate the classroom. I was also the first parent of a nut allergic child whose child brought their own snack everyday, instead of eating the snacks that other parents take turns bringing. The school assumed that because they ask for nut free snacks, that they are safe for anaphylactic kids...they are not. They have other severely allergic kids who eat the "community snacks" every day.

I told them that it is a ticking time bomb for those kids. If the policies were set by schools, allergists and child development experts the allergist should be suggesting that all allergic kids bring their own snack. I've encouraged the school to set a policy requiring all anaphylactic kids to bring their own snacks. Lets face it...I see 4 year olds leave the school without booster seats, in the front seat if a vehicle with an air bag. Some of these kids are also the kids with allergies...so one might assume that their family allergy management might not mirror the advise of their doctor.

I heard on a news program (from B.C.) where an allergist recommended that all anaphylactic students be educated in an allergen free classroom, and that the classroom of an anaphylactic student never be used as a lunchroom. He also said that teachers should make sure that all students wash their hands proir to returning to class.

With allergies, it seems that no one is willing to go out of their way to protect the child. If a child had any other health concern, the money would be there to create a safe environment for them physically and emotionally. Schools will spend thousands of dollars to make a school completely wheelchair accessable for one student, or hire a personal tudor for a child with fetal alcohol syndrome. When you ask these same schools to ensure that children don't eat around your child, and wash their hands they just "don't have the resources" to monitor hand washing.

I took my children to play at a playground at our local school last june. Some special needs children were outside laying in the sun. Their specially trained teachers were helping the kids with their physiotherapy and singing them songs. The kids looked so happy. Their emotional well being was (and should be ) a big concern to the school. But why is an allergic child told to suck it up or stay home? Why are they put in situations where they are at risk for dying? Why are their emotions not taken into consideration regarding anxiety (about being around food that can kill them), feeling left out, and being isolated and different? It just does not seem that the emotional wellbeing of anaphylactic kids is being taken very seriously.

Schools often have party days and special junk treats. I heard Pres. Bush addressed the U.S. about the "pandemic" of childhood obesity. The life expectancy of kids today is dropping from that of our generation. Junk food is to blame. So why, when junk food is not in the best interests of anyone, is the desire to have junky treats put ahead of the safety and inclusion of anaphylactic kids. The junk is not doing anyone any good. It frustrates me to see that teachers value the junk food so much...and push it on the kids...and make my child feel excluded in the process.

I discussed with my daughters preschool about the possibility of my milk allergic daughter attending next year. I asked if they would be willing to request that snacks consist of fruit and vegetables only. Snacks this year are quite often dainties...even though the school suggests healthy snacks, it seems that parents want their kid to be the "cool" kid with the "cool" snack. I don't think that the milk products that are being sent are that necessary because it is 2 or 3 snacks a week...when most kids need more fruits and veggies anyways...and the milk products that are being sent are usually icing, baked goods, and sometimes cheese (which is healthy but i feel that kids can easily get enough milk at home, they need the fruits and veggies in their diets). The teacher seemed willing to discuss it with the rest of the staff, but seemed to agree that setting an example of regularily eating fruit and veggies was in fact in EVERYONES best interest, not just my childs. At least that is a step in the right direction.


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PostPosted: Sun Nov 20, 2005 9:21 pm 
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Joined: Sat Oct 01, 2005 8:55 pm
Posts: 412
Location: Vancouver, BC
Thanks for writing. My oldest child's kindergarten teacher had a "fruit and veggie" only policy for snacks, and it worked great, the teacher has to be firm at first, but it is in everyone's best interest to do it, and the bonus was that my child (who was very resistant to eating fruit and veg at home happily ate them with his classmates. The kids will follow the adults lead.

I agree that our children have been left out of the cold as far as getting their special needs met. That is one of the reasons I want to write this paper. I have had many "discussions" over the years with policy setters telling me my kid doesn't have a disability because he's normal except while he's experiencing anaphylaxis. He might not be disabled, but he is something!! It took me a long time to learn what to say back, but in one course I took the instructor explained all the different definitions. An IMPAIRMENT is an abnormal physical phenomenon (IgE response to harmless substance causing allergic symptoms); a disability is the result of the impairment (in this case the allergic symptoms); handicap refers to the effect on the life of the person. Special needs is an educational term used to designate pupils who require special educational programming. Therefore, although our children are not disabled, they do have a "special need" and an impairment of their immune system. They could also be said to be medically fragile, which refers to children with special health management needs.

It will be interesting to see what Ontario does as far as providing funding for the new legislation. I do not see why our children are treated differently. i worked with a child who had a rare ailment that caused his blood not to clot, and he had an aide to make sure he did not get bumped in the playground. My kid has to negotiate a palyground with 500 other kids and no restrictions on what they eat and 3 supervisors. It would make more sense to make the playground "allergy aware" than the classroom - no one eats in the classroom! But the Handbook says that the classroom should be "allergy aware" so the administrators were more than willing to do that - but it doesn't solve the problem for my kid as the food is in the lunchroom and the playground! Actually, my school has been quite helpful, and I have signs plastered everywhere, but people forget, and we have had a few scares.

We all just have to keep raising awareness - especially in high schools.

Pam

Pam


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PostPosted: Mon Nov 21, 2005 7:45 am 
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Joined: Tue Mar 22, 2005 11:17 pm
Posts: 6456
Location: Ottawa
We were lucky as there are 5 other children in our daughters JK class who have food allergies and there are 2 odr chidren already in the school.
I went to the school board website and downloaded everything I could find. I downladed from the Calgary Allergy Network, Anaphylaxis Canada and the Food Allergy and Anaphylaxis Betwork.
I brought all of this and the most recent results of her allergy testing with me to meet the principal.
I tried to let them expain to me what they had done or planned to do to keep our daughter safe. This puts the focus on them and their responsibiities. I tod them what her triggers were and what her reactions were. I told them that the Dr recommmends total avoidance and there is a chance she will out grow at least one.
After the Public Nurse came out to talk abut alergies and how to use the EpiPen, the school became much more proactive. It is not just that they would have a child in a life threatening medica emergency and it be up to that one teacher to identify the emergency and to act correctly and quick, that teacher may also have 29 other students who are going to notice what is happening. It would be a traumatic event for all invoved!
We have started a support group at our school. We meet evry 2 months or so to discuss food allergy awareness, news, support each other through our individual life senarios and identify and help problem solve areas in which the school might need to focus.
Our principal is starting to realise that she may have to rethink pizza day when our daughters cass is in grade 1. She was surprised to hear that our Dr is recommending that our daughter be absent on those days. As it is the school is designed in such a way that the JK and SK classes are separated form the oder classes and it is not too much for the custodial staff to pay extra attention to the door handles, toilet flushers, and drinking fountains in this area.


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