I really need help with this!!!!!!!!!!!!

Posted on: Thu, 07/26/2001 - 1:39pm
AlwaysAvoidAnaphylaxis's picture
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Our son will be 3 in August and is very sensitive to tree nut, and is dairy and egg allergic. He has not been to school yet. We were planning to send him to a preschool in September. It is 5 mornings a week. They have never had an allergic child there. It is not at all worth it to us to send him to school now unless we know that he will be safe. I sent a list of things we wanted done to the school and there response was that they want to meet with me to discuss.

What if they say that maybe he should not go to preschool yet because of his food allergies????? They may say that because they cannot be bothered with the extra steps needed to care for him. Can a small church preschool have a 504 plan? We told them that either one parent or grandparent would be willing to volunteer at the school/in his classroom/outside the hall of his classroom, that i wanted to clean his preschool room myself before the first day of class, that all children and teachers should wash their hands upon arriving at school, that we would provide all snacks to his class and any food items used in cooking/crafts, will provide an inservice to all adults at the school on food allergy/etc

their response to these requests was "can we talk about it?" what if they say that these are ridiculous and that i am overreacting and that maybe he should not go to their school? AH!!!!!! What should I say? I liked someone's line of: "if you were allergic to bees and could have a reaction and die if the bee flew by you, would i bring bees into the classroom?"

Posted on: Thu, 07/26/2001 - 10:35pm
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Dear AlwaysAvoid...,
First of all take a deep breath. Go to this meeting with an open mind and see what it is they want to know - could just be good things like how to be prepared, signs of allergy, etc. etc. This is all new to them too. My son is also 3 and will be starting preschool this fall, it is two days but full days at that. I began getting his school on board with the allergy last September and still things are not completed to my satisfaction.
The initial chilly response I received from the Director during a private conversation was "I'm not sure we can do anything to accomodate your son ... but bring in some information for me to read and we'll meet again". As many on this board know I made a very professional presentation on peanut allergy in schools, a 100 page binder of information was given, I purchased and delivered the FAN School Allergy Kit which includes numerous videos and epi-trainers. Basically I bent over backwards.
Luckily the second meeting had this head director, the curriculum director, administrator and the potential teacher for my son. What a difference a group of people can make to the attitude - instead of brushing me aside I was met with questions, we brainstormed how best to keep Philip safe. Never did the group address excluding Philip from the school. Not everything went smoothly mind you and there were some hurdles to get over after this - but we did it.
Now I have to say that none of this is because the head director has helped in any way shape or form. It is clear she doesn't want this issue to deal with and therefore has done nothing with the FAN kit, nothing with other staff, etc., etc. All her promises have been broken. All of them.
My sons teachers (Head and assistant) and I sat down last spring and decided that we had better handle things ourselves if we want anything to get done. So our plans for Philip are contained. Luckily this is the 3 yr. old class and they don't go from building to building and teacher to teacher like the upper grades do. All I can do is take one year at a time.
This year his teachers are trained in allergic reactions, treatment regimens, back to school orientation for parents asking for peanut awareness - and avoiding sending peanuts to school; I will be the classroom checker for all food products and will attend each lunch session. There are many things in addition to this - but the most important in my opinion is getting the support and cooperation of his immediate teachers. The director might stop in once a week but the teachers will have him for 16 hours a week.
Now if they had been completely hostile and unaccomodating I probably would have been heartbroken cuz it's a pretty special school. But the fact is that my son comes first, this year is actually an experiment - if he continues to have multiple contact reactions in this classroom then I will probably have to consider home schooling.
As for your child - if the school says they don't want him - I would really look elsewhere. Do you want someone in charge of your child that is afraid of him or doesn't want to deal with him? It seems as though there are many peanut free preschools popping up around the country - I know of three locally, and then many more peanut free elementary schools. Remember that preschool is not a requirement. You are your child's first and best teacher - don't send him into a hostile environment.
Oh and addressing discrimination - if your school is based in a religious building and associated with a church and it's teachings, yes they can basically discriminate however they want. The ADA only covers non-religious schools.
Good luck and let us know how your meeting goes.

Posted on: Fri, 07/27/2001 - 1:17pm
Rhonda RS's picture
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Joined: 02/24/2001 - 09:00

oops, double posted.
[This message has been edited by Rhonda RS (edited July 27, 2001).]

Posted on: Fri, 07/27/2001 - 1:31pm
Rhonda RS's picture
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Hi Triple A,
I second Philip

Posted on: Thu, 08/02/2001 - 1:47pm
AlwaysAvoidAnaphylaxis's picture
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Joined: 06/23/2001 - 09:00

We are meeting with the director of the preschool tomorrow. I have photos of our son to show her and will give her the article from the NY Times entitled "the allergy prison" and some other literature. Have several requests including that an adult family member be in the classroom with him at all times. I have some tough requests but only to ensure his safety.
However, my DH and I have decided that we are not going to send our son who will be 3 at the end of august to pre-preschool with his TNA, dairy and egg allergy. He is too young and will gain minimum benefit from the experience. He is a sharp as a tack and has his older sister to help him with "socialization skills" of which he is good at. I wanted to send him to make his life as "normal" as possible but my DH said why send him if he doesn't have to go. To color and cut with scissors? It is not likely that the director will be able to meet all of our requests and we want him to be safe, as he is at home at this age. In one year when he turns 4, he will be much better able and equipped to say no and to not suck his thumb unless it is washed, and to handle his food allergies better. He parrots back to us now that he had food allergies and he knows not to take any food from anyone other than certain adults (even if it is food he knows is safe at home) however, who knows how much a child at this age (not even 3 yet) truly UNDERSTANDS. Why send him into a den with wolves (which is sort of what he will be sent into in school when he has life- threatening food allergies). I have been trying to make it work but my DH is right---it is just not worth the risk for the minimal benefit at such a young age. What a mind boggling problem that few people understand.
We are invited to a work picnic at a lake. I told everyone by email that we would attend but requested that no nut products come to the party (even though he won't eat any of it anyway, i will just bring food for him, but DH and I won't eat it either because we don't want him to feel left out any more than he may already) and that no one mention food allergies to him while we are there. Everyone has agreed without complaint so far. Someone I worked with said " we will have barbecued chicken, can he eat that?". i said well, i don't know what was cooked on the grill beforehand and i also don't know about the utensils used on the grill if they had contaminants on it or what plate the chicken is put on....am I crazy or what? i would rather be safe

Posted on: Fri, 08/03/2001 - 2:23am
AlwaysAvoidAnaphylaxis's picture
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We met. It was very interesting and a difficult thing to do. There were many moments of awkward silence which I let happen. At first, there was minimal cooperation and the attitude was: what are you doing here? Why couldn't you find some other place to go? Why us? At first, all my requests seemed unreasonable. Toward the end, the atmosphere relaxed a bit and they were willing to work with us. Agreed to wash hands, send out parental letters, provide all snacks ourselves, educate staff, have a phone with the teacher, have not done a 504 and didn't know if we should for sure for a church preschool in a small town. Must think about whether we want to send our child there. One of the most difficult decisions I will ever have to make...will post more later.

Posted on: Fri, 08/03/2001 - 4:44pm
Rhonda RS's picture
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Joined: 02/24/2001 - 09:00

Hi Triple A,
Also, you don

Posted on: Sat, 08/04/2001 - 11:20am
AlwaysAvoidAnaphylaxis's picture
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Thanks for all of your feedback---this whole board is a great support and I feel like everyone here is a friend. As others have said, I cannot sleep at night ---i go to bed thinking about this and wake up thinking about it and look at our cute little one and couldn't bear to send him out. My DH said it is like sending him into the woods at night with a flashlight. We will just wait a year. The picnic is a work picnic for me and not for the preschool---sorry, i was jumping from one thought to another. We really don't want to send him to preschool but were initially willing to if they met all of our requests and the most important request was that we be in and around his classroom at all times but they refused. It only takes a second and we feel that given his RASTs that he has a chance of outgrowing the tree nuts and that the less exposures the better, and when he is one year older he will be that more better equipped to deal with these situations. I personally want him to attend school because i want him to be just like the other children so it is a personal thing for me but i have to realize that he is not like other children and that he needs to be protected a bit longer. I wish he could go to school because i know he would love it but if he had a reaction, i would really feel bad and would then pull him out of the school.
I do work full time out of the house. My parents stay with the children during the day.
take care and thank you

Posted on: Sat, 08/04/2001 - 2:32pm
Rhonda RS's picture
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Oops! [img]http://uumor.pair.com/nutalle2/peanutallergy/smile.gif[/img]
[This message has been edited by Rhonda RS (edited August 05, 2001).]

Posted on: Sun, 08/05/2001 - 12:31pm
AlwaysAvoidAnaphylaxis's picture
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Joined: 06/23/2001 - 09:00

No pre-preschool it is....tough decision but will work best. will enter a preschool at just 4 years old next year. This will work best and take the stress off. He does have a chance to outgrow his allergies (highest RAST to brazil nut at 7.19 last month) so maybe lessening the exposure risk may help.....what a blessing that would be. My DH said sending him to school now is like sending him in the dark woods with a flashlight alone. Aren't DH so great? Thanks again!!

Posted on: Fri, 08/17/2001 - 9:32am
Rhonda RS's picture
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Hi TripleA,
I think you are doing the right thing! Take care, Rhonda

Posted on: Fri, 08/24/2001 - 2:11am
AlwaysAvoidAnaphylaxis's picture
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In my quest to find other activities for our now 3 year old little guy to do instead of going to pre-preschool, I came across a "parent participatory school" that is 30 min from our house. I called the director and she was great! She said her children had allergy to red dye (not anaphylactic) and made all sorts of promises on the phone. So last evening in the middle of a million things we have to do, we went to the school orientation. This school is run completely by parents and everyone was so "happy", i almost felt i was watching a movie! The teacher is an LPN (but that doesn't mean anything since Nathan had an LPN with him on his last field trip in Washington state) and she said she knew how to use an epipen. there is a PA girl in the class but it sounds like her parents don't comprehend the severity AT ALL! there is a shellfish/fish allergic girl in the class. They were so receptive. So, why shouldn't we sign right up!!??? We decided not to send him there. Mostly because he just turns three this weekend, he will not separate well (just trying to get him to do the Little Gym while we watch from the window is not working!) and the toys are not so clean and he is a thumb sucker and 2 year olds use the same room on alternate days. FAAN told me that there is an increased number of reactions in preschool/daycare settings where food is served in the same room as a play room compared to schools where they do not eat in the room. And DH said, how is the teacher going to remember which child is allergic to what and with ours being allergic to TN/dairy/egg, that is too much for her to keep straight. She said "can he eat goldfish, we have goldfish crackers around for emergency?" Course not, they have whey etc. They would not let us be in the room for snack time each day (since the parent there alternates) and at this age when school is not critical, we elected to keep him at home where he will learn much more with scheduled playdates etc. Will I ever be able to let go? i think when he is more responsible it will be easier, i hope.

Posted on: Fri, 08/24/2001 - 3:17am
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Joined: 07/30/2000 - 09:00

Hello! I can relate to your situation totally! Preschool starts in less than 2 weeks for my PA son and I have been working with the school, church preschool. At first I just knew they woud take one look at my 504 plan I made and ask me to find another school. I met with the school council and they were fantastic!! Gave him a peanut free class and have asked the other parents to volunteer to make their classes also peanut free. From response it looks like we will have PN free school! I would be more than happy to send you the 504 plan I have for him. Also found that they were very willing to do all they could because they knew someone with a food allergy or could relate to it from the diabetic diets. I have volunteered to come in and help with all the parties, to read the ingredients on the snacks that are brought in for the week, to make posters for the classes, train staff on epi pens, and if they wanted me to I would sing and dance each morning! Think having a 504 is best possible thing so they have some guidelines. I know when I first found out son was PA was so overwhelmed I didn't know where to start and alot of things I didn't even consider. Would be more than happy to share the info I have gathered and then you can alter it to fit your situation.

Posted on: Fri, 08/24/2001 - 7:13am
Claire's picture
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Joined: 04/19/2000 - 09:00

I agree that we only have the kids home for such a short time before they have to be pushed into the school rat race. My kids never went to preschool nor did I work and they are just fine.Jennifer is very sociable and very smart. Chris is very shy,but my husband and I always were. Also can be very intellegent.
My 3 year old knows how to count to 11 or 12 depending on the mood he is in. Is learning pretty well on spelling his name. ABC's are coming. Can dress himself. If you choose nursery school good luck and if not you will be fine. claire

Posted on: Fri, 08/24/2001 - 10:53am
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Claire~~I am a SAHM too and he has been home with me the past 4 years, but I do feel it is important to go ahead and gather your information and have a 504 plan ready now for when they do start school. I had him in a Mother's Morning out program 2 days a week that really didn't involve food hardly at all, the church provided the snack which they made sure was peanut free. I have slowly waded into this with him and when he does start kindergarten next year then I feel I am better prepared. It does take some time to gather all your information and cover all the bases. I will start working on his plan for kindergarten this fall and talking with the school. Do you have a support group in your area to help with this?
I have found that they are a wealth of info especially if they have a child who is already in school.

Posted on: Sun, 08/26/2001 - 12:31am
AlwaysAvoidAnaphylaxis's picture
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Joined: 06/23/2001 - 09:00

Thanks for all of your input. Based on his age, he is to start kindergarten in sept 2003 but will try to do pre-k in 2002, won't start pre-preK this fall. His friends are in 3 days per week but he is much smarter than they are. he can almost write his whole name already! I would like a copy of your 504 plan ----i hope he will outgrow the dairy and egg by next summer so we will only deal with TN. Will be much easier that way. DOn't want to label him as disabled but it is probably a necessity to keep him safe. there seems to be no one else around here to form a support group. we know one other family with a PA/TNA daughter but they have a much different comfort zone than we do. don't know anyone else so there is no one else here for a support group that i know of. Thank goodness my parents are here to help because my DH and I work full-full time!
He had his 3 yo birthday party yesterday which was a hit with the county fire truck coming and a balloon drop and a pinata and the cake was homemade (we were up until 3 am doing it!!!) from [url="http://www.family.com"]www.family.com[/url] they have GREAT cake designs! thanks for all of the support and input y'all.

Posted on: Sun, 08/26/2001 - 12:33am
AlwaysAvoidAnaphylaxis's picture
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Thanks for all of your input. Based on his age, he is to start kindergarten in sept 2003 but will try to do pre-k in 2002, won't start pre-preK this fall. His friends are in 3 days per week but he is much smarter than they are. he can almost write his whole name already! I would like a copy of your 504 plan ----i hope he will outgrow the dairy and egg by next summer so we will only deal with TN. Will be much easier that way. DOn't want to label him as disabled but it is probably a necessity to keep him safe. there seems to be no one else around here to form a support group. we know one other family with a PA/TNA daughter but they have a much different comfort zone than we do. don't know anyone else so there is no one else here for a support group that i know of. Thank goodness my parents are here to help because my DH and I work full-full time!
He had his 3 yo birthday party yesterday which was a hit with the county fire truck coming and a balloon drop and a pinata and the cake was homemade (we were up until 3 am doing it!!!) from [url="http://www.family.com"]www.family.com[/url] they have GREAT cake designs! thanks for all of the support and input y'all.

Posted on: Sun, 08/26/2001 - 3:42am
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Hi! I will email you the plan we have for preschool! I ran accross an outline Rhonda has made of a 504 plan that is excellent, will have to hunt up that here. There are other plans listed on these boards that are great too to give you an idea on where to start. We did not have a support group in our area at all, and met another Mom on this site who lives less than 5 minutes away so we started one. Best place to start is to contact your local paper and see if they will do a story for you. We got the biggest response from that, still almost a year later we are still hearing from more more parents with PA and other food allergies.
Feel free to contact me, I am more than happy to help.
Mary

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