How to find other PA parents?

Posted on: Fri, 09/26/2003 - 7:11am
ddaub's picture
Joined: 04/11/2002 - 09:00

What is the best way to locate the parents of PA children? My son had a peanut contact reaction the first day of school. Obviously all the work we did to establish a peanut free table, hand washing, etc in my sons mgt plan wasn't used. The principle told me that there are at least 6 other PA kids in the school. I would love to get all of us together and present a united front but the school won't release the names for confidentiality reasons. Thanks!

Posted on: Fri, 09/26/2003 - 7:35am
becca's picture
Joined: 05/22/2001 - 09:00

Is there a place where you can post something, or ask the the school to give the other families your name? Then maybe they will have an interest in contacting you. Maybe you can prepare a short letter and ask that it be sent to the other parents? becca

Posted on: Fri, 09/26/2003 - 8:35am
California Mom's picture
Joined: 07/14/2000 - 09:00

I think Becca's ideas are good. A problem may be that the school will not want to encourage you all to "organize" together. I hope I'm wrong, though.

Posted on: Fri, 09/26/2003 - 8:48am
LaurensMom's picture
Joined: 05/23/2001 - 09:00

We gave the school a letter for THEM to send home to the parents of the other allergic children. The letter stated that it was sent home on behalf of us and none of their personal information was released to use, including their name.

Posted on: Fri, 09/26/2003 - 9:16am
CVB in CA's picture
Joined: 10/15/1999 - 09:00

They may already know who you are, but have chosen not to contact you.
I have learned casually of several kids in our school, but I am the "extremist" or parent that is at least more documented. My biggest tip off was seeing other kids go and eat at the "peanut free" section on their own.
Other children told my child they were allergic, or about other kids. An older allergic child was particularly protective of my child in the cafeteria.
The only parent who came up to me about it gently implied I was being too strict. She already knew who I was because of my slightly higher profile. I knew nothing of her child at all.
Her child no longer carried an epi and ate many more foods than I allow my child. I was not comfortable with this discussion and did not have much of a comeback.
Do not necessarily expect other PA parents to be supportive or have the same comfort zone. Many people do not want it known to anyone.
The parents on this board are very careful and take the allergy very seriously. Not all parents the same
Year's ago at my child's daycare I left notes to parents of two younger children about contacting me. I never received a response. I found out about one from another parent. The other's emergency info was prominently dsiplayed next to the classroom phone.
Ask around, ask your child and keep your eyes open for classroom or other postings. In daycares keep your eye out for kids who always are eating alone, at the end of the table, or right next to the teacher. Sometimes there will be a kid with a totally different snack or special plate. That is how I spotted a milk allergic child also.
[This message has been edited by CVB in CA (edited September 26, 2003).]

Posted on: Fri, 09/26/2003 - 9:36am
StaceyK's picture
Joined: 05/06/2003 - 09:00

How discouraging ~ a reaction the first day. I agree with the ideas presented here. I have to say that I have found comraderie with some PA parents and have been discouraged by others.
[This message has been edited by StaceyK (edited November 06, 2003).]

Posted on: Fri, 09/26/2003 - 10:02am
Gail W's picture
Joined: 12/06/2001 - 09:00

Quote:Originally posted by LaurensMom:
[b]We gave the school a letter for THEM to send home to the parents of the other allergic children.[/b]
This is what we did. We wrote a letter giving information about ourselves and invited them to contact us if they'd like. We put it in the context that our DD would like to know that there were other children with food allergies, and that parents could share useful information.
I went through the school nurses. Some of the nurses said that the principal needed to approve, so I did in those cases. No confidentiality was broken. I would have pursued it if the principal or nurse had refused. I asked for and they told me the number of letters that they sent out (= how many food allergic kids there were at that school).
Our first event was a peanut-free Halloween party. It was such a fun time for the 10 or so families that came.

Posted on: Fri, 09/26/2003 - 10:13am
ddaub's picture
Joined: 04/11/2002 - 09:00

Thanks for all the great information! Unfortunately, the school is not being helpful and has a real big confidentiality problem that is blocking my way. I also have the additional problem that my son is mildly autistic. He is split between the Autism classroom and Pre-K during the day. Both classrooms are the same campus but managed by 2 different supervisors, the principle and district super. Therefore, I am fighting my battle on both fronts.
The super wants to keep the whole PA confidential and even refused showing the FAN Alexander the Elephant video to his Pre-K class. My son is so allergic that he is off the scale on the RAST test so even skin or air contact results in an ER visit. School has been great about Epi-pens, I have four on campus, but very hesitant to limit the exposure risk.
The Autism also creates the verbal/communication barrier where he cannot say no or really understand that he cannot have peanuts.
Starting the 504 process but I can

Posted on: Fri, 09/26/2003 - 9:04pm
MommaBear's picture
Joined: 09/23/2002 - 09:00

Quote:Originally posted by CVB in CA:
[b]Do not necessarily expect other PA parents to be supportive or have the same comfort zone. Many people do not want it known to anyone.
The parents on this board are very careful and take the allergy very seriously. Not all parents the same
Partly why my expectations of non-pa/nut/food allergy parents (or special needs, for that matter) are not very high.
Occasionally and unexpectedly, I am pleasantly surprised, but *personally* *I* would find awaiting such surprises, if my children's lives were concerned, to be very difficult if not intolerable.

Posted on: Sat, 09/27/2003 - 12:49am
becca's picture
Joined: 05/22/2001 - 09:00

To add to CVB and MB's comments/observations, some PA parents believe they have educated themselves well, and are practicing safe behavior, yet it falls short of what some of us do.
I have met a mom recently, very caring, understanding and with a PA son, who allows lots of things we do not. When I just ask her about stuff, because I have called and got one sort of info, she will say, I never thought to worry about it! Very nicely and seriously, not being rude. I am scaring her, even, so I have to be careful. I really just feel relived to have someone in my every day life I can bounce things off of, and adjust my comfort zone. Her son is highly sensetive, and has been reaction free with their family practices.
Anyway, just making the point that the dafe food practices can vary widely and still keep children safe. It is a tough thing to deal with when it does not match up to our needs. Very tough. becca

Posted on: Sat, 09/27/2003 - 1:34am
solarflare's picture
Joined: 02/07/2002 - 09:00

I don't mind the teachers or secretary telling other parents that my son has food allergies. Jason's first grade teacher has been very good about keeping it confidential though. There is one other food allergic child in his class, and in the letter she sent home about not allowing food to be brought in for birthdays, she didn't specifically name either child. The only parents that know are the parents of either child's classmates from last year, and the room moms.


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