Talking Allergies

school & communication
Page 1 of 2

Author:  Caroline2 [ Tue Oct 10, 2006 10:21 pm ]
Post subject:  school & communication

Ok, I am trying to work within the system. But how would you judge this for keeping my son safe? Judge me, judge the school. And forgive my rant...

It is the first year my son has been able to run in the cross country meets. He is very excited by this, and it is something that he wants to do to join 'the big kids'. Today we had a meet, and it meant the participants had to change and they were excused early so they could get across town.

I wasn't able to pick up the kids (I get off work right when school lets out) so I asked a close friend if she could do so. Her son and my son are pretty much best friends and I am really close with her - we even had Thanksgiving dinner over at their house last night. She knows about my son's allergies.

So I get to the meet, only about 15 minutes after they arrive. I ask my son for his epi pen holder so he doesn't have to run with it. Oops he says -- he must have forgotten it at school. I call the school and they can't find it. I have one with me, so he does have meds but....he forgot it at school. And this is the second time. The other time was the very first X country meet, right when he changed. I picked him up that time, so there was no time he was 'not covered.'

I guess this set some wheels in motion at school, though, for my friend tells me how the vice-principal (also the X country coach) comes over to her and tells her she has to find the epi pen now and go search her car and it doesn't matter that the boys are running right now and she wants to watch and... you get the picture. She was all over her. I didn't talk to the VP - she must have gotten a call from school. I would have never spoken to my friend this way.

And then guess what -- the boys finished their race and. . . they were given a piece of licorice! CANDY AT A MEET. My son asks to see the label and is told they are bulk -- he knows he can't have anything and so he bursts into tears and tells me everything is terrible and he hates his allergies.

It is all things all the time right now. I really think the teacher should have reminded my son that he needs his medication -- he should have come back to the classroom in his gear WITH his meds. She ought to have asked. Also, I should have reminded my friend to ask my son about his meds. I should make sure that SWEETS aren't the reward for sports and let the school know that (and/or have something on hand in case there is a treat at the end?!)

I should not freak out. I DON'T want the shool to freak out at people who have care of my son when I am not there. There is just so much to communicate. And the scariest of all? There is not one little bit of room for error if there is an accidental ingestion of peanuts. We need to communicate well to avoid this, and in order to face it should something happen.

ARGHHHHH.....I am a bit better for getting this out. Thanks for reading.


Author:  ethansmom [ Wed Oct 11, 2006 12:29 am ]
Post subject:  Re: school & communication

Caroline2 wrote:
I ask my son for his epi pen holder so he doesn't have to run with it. Oops he says -- he must have forgotten it at school.

Others on the forum have said that their children were as young as 4 when they started wearing their epinephrine in a belt-like holder around their waist at all times during school. I know the Medic Alert website is selling a couple. If it's on his person at all times, there's no burden on him or school personelle to remember to bring it anywhere.

As terrible as it was for him to have to be left out of not being able to eat the licorice (and that they were actually handing out candy at a running meet) -- you should be really proud that he is able to self-protect so well. I'm so impressed that he asked to read the label!

Author:  Caroline2 [ Wed Oct 11, 2006 12:46 am ]
Post subject: 

Ya, my son is now wearing his epi pen at school. It is just because he had to change that he took it off and forgot to put it back on -- he should have been wearing it, even though the meet was after school. As it is expected that he wears it, so I can see how the teacher didn't ask before he left for the meet. I just offered to hold it at the meet because I don't make him wear it at home. . . and I wanted to make sure he had it on him, as he forgot the week before.

As for reading labels, he is pretty good with that. I praised him for that, through his tears. It is really hard sometimes!


Author:  Helen [ Wed Oct 11, 2006 6:35 am ]
Post subject: 

I can see why your friend wouldn't like being bossed around by the VP . . . but at least the VP is taking your son's allergy really seriously. It's better to have a VP who gets stressed when the epi isn't there than to have a VP who isn't concerned. But what's with the licorice treats? They really should not have offered your son unapproved food! Thankfully your son is good at thinking about cross contamination issues--but when he is only 8, the school needs to bear some responsibility for this too.

Author:  _Susan_ [ Wed Oct 11, 2006 7:28 am ]
Post subject: 

Yep, I agree with what has been said.
Give your son a big hug for being on top of his game and recognizing that he had to ask about the label and the no bulk rule.
Thank your VP for being thorough in following up with the mother who took your son to the meet. In his eyes she was the last person who might possibly have the EpiPen. Yes he was too forceful with her but he was worried. Now she knows how you feel.
8 years f age is still kind of young to assume full responsibility over his meds. Does the Coach sign the students out? Is there an adult with them in the lockerroom? The teacher or coach should remind him or ask everyone if they have everything.
Sporting event should promote a healthy lifestyle. Bottled water would be acceptable to be handed out. As they are aware that a student with food allergies is participating, they ought to bear this in mind when planning the event and speak to the parents if food is going to be involved.
I find that I don't anticipate food at certain events and woud really like if the schools could be more up front about their plans so that we can alter our plans to follow suit. (Had you known, you could have sent a safe treat.)
Perhaps the plan to carry an emergency treat in his backpack?

Author:  twinmom [ Wed Oct 11, 2006 10:47 am ]
Post subject: 

I can't believe they offered candy as a reward after a sporting event? Must food be a part of every school activity?

Good for your son though, for asking questions. But I'm so sorry he was disappointed yet again.
And even though your VP was rude, it sounds like maybe she is starting to get it?

Author:  gwentheeditor [ Wed Oct 11, 2006 11:40 am ]
Post subject: 

I agree with Susan re having a safe treat available. That way, if he's a little hungry after a long run, there's something in his bag. If you'd already thought of this/done this, and your son is just frustrated, well, not a lot you can do other than remind him that it was just one measly candy. (Though I agree with your questioning of why they hand out such.)

A lot of us with allergies have had the frustrations that he feels right now. It's harder at ages when you're still trying to fit in; but it does improve.

Have to say - even if the VP was strident, it's nice to see she "gets" it.

Author:  Catherine [ Wed Oct 11, 2006 12:12 pm ]
Post subject: 

He's 8?? That's pretty young. He's obviously sooo excited to be able to take part in the meets. That probably accounts for the tears even though it was only one candy. He's obviously pretty worked up for the event. Also, was he aware of the freaked-out vp and friend? He must have been under a lot of stress in that moment. I agree with the others, he sure handled it well by asking about the candy, especially with all the excitement of the meet!

I guess the question is, who is responsible during a school event, to make sure an 8-year old little boy has his life-saving medication on his person??

I would say the school is responsible. What's wrong with this? Isn't the school responsible for the safety of all the children during school events?

I know our kids have to learn to ALWAYS have their epi with them, but it's a learning for them, their brains are still developing. While they are under the care of the school, the school needs to ENSURE they do remember.

This is the whole point of schools having an appropriate Anaphylaxis Management Plan for each child. Not just an Emergency plan, but also a Management plan, so we don't get to the Emergency stage.

So although the school didn't transport your child to this event, the Management plan would cover what steps would have to occur before he could be excused early.

Author:  _Susan_ [ Wed Oct 11, 2006 6:25 pm ]
Post subject: 

Not just an Emergency plan, but also a Management plan, so we don't get to the Emergency stage.

I agree!!!
What is needed is a pro-active response to avoid the allergen. This is what Sabrina's Law is all about.

Author:  Caroline2 [ Thu Oct 12, 2006 12:11 am ]
Post subject: 

Thanks everyone for your support and comments.

I spoke with the principal today about the meet, and she was not defensive or negative about my suggestions for improving our plan for my son. I mentioned how vigilant the VP was, and that this is not a bad thing. I also have to work with communicating with my friend when picking up my son. And I did mention the candy. I now know it is a parent initiative. . . and so now I am going to be the complaining scrouge who asks that they give the kids a piece of fruit (or, hey, a pat on the back is nice, too!) rather than a sugar and dyes.

Slightly related, tomorrow we are going to look at a new school -- my son has to change next year as his present elementary is transitioning to a middle school so all the k-5s are going to one of two other local elementary schools. Each school is holding an open house, kids and parents welcome, so we can go check out the place. At the first school last week, it was a disaster for us when I spoke with a teacher in an 'allergy aware' room. She told me about all the other parents who don't understand the picky parents who have all these food control issues -- this is in a classroom with THREE anaphylactic kids! And then we went to the auditorium...filled with cookies my son couldn't have. He was SO upset.

So....for tomorrow. I know this other school a bit better, and have even met with the principal there regarding allergies and I believe their community is a more understanding when it comes to kids with allergies. I also asked really nicely if I could kindly provide some peanut free granola bars if there was going to be a cookie social during this open house. He said for certain he would see to it that it happens and I should not worry about it. So DON'T tell my son if this works out -- I will also have something in my bag because the disappointment has been too great lately -- but I know it will fill my son with a lot of happiness if he discovers that he is actually welcome at this new school. And welcome without a fuss would be FABULOUS.

Sigh. Communication: It's my mission when it comes to my son's allergies....


Author:  twinmom [ Thu Oct 12, 2006 11:26 am ]
Post subject: 

This is kind of off topic, but related in the fact that we had a school official who "got it" but was being a wee bit heavy handed, a failure to communicate (me to my son), and a very disappointed kid in the end.
One of my sons thought he'd do a good deed yesterday (they have these "Pride" awards at school for extra good behaviour, and he's been really wanting to earn one). So he decided to spend his recess collecting litter, then proudly took it to the principal who was outside supervising. Well, I'd just finished going over our anaphylaxis safety plan with the school, which includes (among many, many other points) the fact that anaphylactic children should never, ever participate in garbage collection/ yard clean up of any kind, because of the serious risk of coming into contact with one of their allergens on a discarded wrapper. The poor principal freaked out, got my son inside washed him up ASAP, informed his teacher so they could observe him carefully all afternoon, and had a talk with him about how dangerous that was. Really great, right? All of the things I need the school to do to keep my children safe, but my poor son was so disappointed, hurt and embarrassed. He had a little cry after school about how frustrated he felt. And I felt so sorry for him...we all know that horrible, stomach-sinking moment of painful surprise when we think we've done something great, and life gives us a big ole slap in the face instead of a reward.
So we spent some time making our own pride awards last night, and I explained how proud I was that he had taken initiative and tried to contribute to his school community, and of course, never ever to pick up garbage again (we'd covered that before, but were obviously in need of a refresher). And I called his teacher to ask her to have a talk with him to validate the fact that he'd tried to make a good choice, and to explain how those awards work (he's getting really frustrated thinking that there's no point of trying his best at school because his teacher won't notice anyway...for example one of his friends who has a really hard time paying attention in school, just got a "Pride" award for good listening. As adults we know that the teachers are trying to encourage him...but it's hard for a kid to understand why so&so who is often disruptive in the class gets an award, while I who try my best don't get one).
Sigh... as my son said "Stupid allergies!"

Author:  Catherine [ Thu Oct 12, 2006 12:12 pm ]
Post subject: 

Oh man....that's so sad.

Are they going to give him the award??

Author:  gwentheeditor [ Thu Oct 12, 2006 3:16 pm ]
Post subject: 

That's so hard - his heart was in the right place.

Author:  twinmom [ Fri Oct 13, 2006 12:32 am ]
Post subject: 

Nope, no award ,at least not right now.
But the teacher did have that talk with him today. She gave recognition to the fact that he'd tried to do something good, reinforced the no picking up garbage rule and even gave him some suggestions on safe things he could do that might earn him an award in the future. He came home at lunchtime, like a new little man. Yay, for good teachers!

It's just amazing how allergies affect your life in little ways, that you could never anticipate. And how hard it is to strike a balance between educating your child's caregivers at school about anaphylaxis so that they really, really get how serious it is, and making them so focused on the allergy that maybe they're not really noticing the child anymore.

Author:  Caroline2 [ Fri Oct 13, 2006 10:14 am ]
Post subject: 

twinmom said:
how hard it is to strike a balance between educating your child's caregivers at school about anaphylaxis so that they really, really get how serious it is, and making them so focused on the allergy that maybe they're not really noticing the child anymore.

I think that is what we are dealing with exactly. I really feel for your son who was trying to do good and then have it turn out the way it did. Allergies are such a big concept -- it really is a very complex issue for all of us to deal with. Once aware of the challenges, we all do the best we can. Doesn't mean it is easy. Twinmom, I think you handled the situation well and I hope your son does get a reward for his initiative.

Our family went to the second school open house yesterday (see privious post) and it ROCKED for allergy prevention and awareness. I almost cannot believe it is just down the road, in the same school district and everything. Our policies really are directed by the principal, and the one at this school is so much more sensitive it is amazing. And what that does is it sets the tone for the community to be more sensitive and less freaked out about allergies. It makes it so the people affected by allergies are less the "the allergic child" and more a member of the school who, by the way, we protect because we care about them. My son liked it because, YES, they provided a snack that he could have as well. It just means so much that he was welcomed and not feared as some sort of legal obligation. . . Although my husband is not going to be supportive of a move from our community school just this moment, I feel a sigh of relief knowing that it might not be as hard next year.

I have an update on my progress with changing policies within our district, which I will post shortly. I am slowly making progress on that front, too, which seem to show that dogged communication and advocacy seem to be worth it!


Page 1 of 2 All times are UTC - 4 hours
Powered by phpBB® Forum Software © phpBB Group