SO of HIV thread....disclosure of allergies & special needs in co-op setting?

[SebastianCat]

Reading through the thread about the co-op where there is a child with HIV got me thinking along the lines of privacy concerns, and I'd like to think through the best way to handle privacy issues when they relate to allergies or other special needs in this type of setting.

 

I am in leadership of a co-op that is relatively small (15 families) but growing. Last year we had one child who had a peanut allergy, one child who had a milk allergy, and one child who was colorblind. Their parents have all known each other for years, and being such a small group it was commonly known. The mom whose child is allergic to peanuts reminded everyone at our planning meeting each year about her DS's allergy and asked that if families brought peanut butter for their lunches, to try not to come into contact with her DS (5 years old).

 

This year we will be adding at least 6 families, possibly more. One of our new families has a child with a severe (anaphylactic) peanut allergy, and a second family has a child who has an auditory processing disorder and uses an appliance of some sort to enhance his hearing.

 

We have a planning meeting in July before the start of each school year. Only the moms attend (no children). Is it right to include as part of the agenda a discussion of "special needs within the group" as a blanket item? Would that make families whose children have allergies feel singled out? Because we rotate classes every 6 weeks, there will be several different moms teaching these classes - it's not as if there will only be 1 teacher to notify.

 

I think the issues here will be that (1) one student has a severe reaction to peanuts; (2) another family has other dietary issues and brings peanut butter sandwiches for their lunches to every meeting; and (3) our group is growing each year, and as we grow it gets harder to keep track of who is allergic to what, and who else has special needs. We need a better "system" for keeping everyone safe while also protecting privacy where needed.

 

Please help me think this through. How do other groups handle discussions like this, and how do you make sure everyone is safe?

[Mrs Mungo]

What we did in my last co-op was that everyone had a nametag. If a mom felt like the co-op teacher needed to know about a special need, then she sent that need into our co-op leader. The need was listed by the child's name on our class rosters. The children with a special issue (of any kind) had highlighted around their name on their name tag.

 

For example, my son carries an inhaler. If he was having trouble breathing, then the teacher was to let him use his inhaler and fetch me from the class I was teaching if the inhaler did not help.

[GoVanGogh]

I don't have any advice, but this has been on my mind a lot lately.

DS has a severe food allergy. I have never had any problems with disclosing it, nor have I ever been concerned about other parents or children knowing. But when you get into other medical issues, it is such a gray area. DS was recently diagnosed with a physical disability. I can't even wrap my head around it yet. But I know - when it was undiagnosed - it caused him needless problems in out-sourced classes. Had I known then what I know now.... I could have prevented him from being singled out because he was struggling in this one area. It was added stress he didn't need at the time, but we didn't know what we were dealing with. Now we know, but - how to deal with the information? I don't mind my friends knowing, but am really unsure about DS's friends knowing - but then again, they are older now and starting to notice on their own.

It is a tough situation.

 

DS was in an outside class last year with a child with autism. DS later told me that the teacher had an "informative session" to discuss the autism with the classmates. I cringed as DS was telling me what the teacher said, but later the boy's mother told me she had asked the teacher to share and told her what to say.

 

Will be interested in hearing what others say.

[GoVanGogh]

What we did in my last co-op was that everyone had a nametag. If a mom felt like the co-op teacher needed to know about a special need, then she sent that need into our co-op leader. The need was listed by the child's name on our class rosters. The children with a special issue (of any kind) had highlighted around their name on their name tag.

This is what DH and I are worried about with DS's new diagnosis. I do want his teachers to know, but - on the flip side - don't want it to be widely known. What he was diagnosed with has a stereotype that does not fit DS's variation. (Disorder has both extremes and everything in between.) I don't want him judged by the stereotype, but teachers will need to know. Maybe after I have had time to process it better, I will feel more comfortable about disclosing.

 

We have the asthma/inhaler thing, too, but I have never seen that as much of an issue. To me, asthma and food allergies are part of childhood anymore. But physical and/or mental disabilities are trickier.

[Mrs Mungo]

It can be really tricky. I guess...if accommodations are needed, then I would bring it up to his teachers. Otherwise, I probably would not. There are always atypical kids in every group and teachers (of all kinds) typically learn how to engage/deal with them.

[Ellie]

IMHO, allergies and special needs are not privacy issues, in some cases life-and-death issues. Of course they need to be disclosed.

[Unicorn.]

IMHO, allergies and special needs are not privacy issues, in some cases life-and-death issues. Of course they need to be disclosed.

 

I agree. I don't know that the special needs have to be disclosed unless there are definite accommodations that must be met, but anything life threatening absolutely needs to be disclosed.

[qtkimi]

I work at a childcare center allergies are not kept private there is a list of all children with allergies posted in the kitchen and office as well as in the class the children are in. That way anyone giving anything to the children know if there is an allergy. What if the normal teacher is sick the substitute knows because allergies are posted. That way no one gets what they shouldn't have.

[Harriet Vane]

Most special needs should be disclosed only by the parents, at their discretion.

 

Anaphalaxis trumps all else. Period. At that point, it is literally life and death. It needs to be disclosed, and the facility needs to be entirely peanut-free. The family who has dietary issues and wants to bring peanutbutter can figure out a different alternative because another child's life is literally at stake.

[Eagle]

The allergies need to be disclosed to the group for the children's safety. Children who are anaphylactic should carry an epipen and the co-op teachers should know how to administer it. Those children should each have an emergency plan on file at the co-op with instructions on how to deal with a reaction (who to call, any medications to take, etc.).

 

Your co-op should develop policies about food. Is it ok to send class treats? Are any specific foods banned at the school? Is there a hand washing policy before entering a classroom or after handling food? Are there any school supplies that contain the children's allergens that cannot be part of the classroom?

[TechWife]

We have a nut free environment for everyone. Other than that, parents must disclose to the leadership if their student is carrying any medication, such as an inhaler, epi pen or insulin. The leadership then lets the teachers of that child know what they are carrying and the teacher is to contact the parent for information on how/when the medication is to be used. It is also the parent's responsibility to make sure the teacher has the correct information.

 

I contact each of my parents via email before the semester starts. In that email, I ask the parents to let me know if their student has any special needs or learning issues that they wish to discuss. I leave it up to them whether or not to disclose information to me. If I have any specific questions or concerns about a student, I call the parent and ask.

[SebastianCat]

Your co-op should develop policies about food. Is it ok to send class treats? Are any specific foods banned at the school? Is there a hand washing policy before entering a classroom or after handling food? Are there any school supplies that contain the children's allergens that cannot be part of the classroom?

 

This is exactly what we need. Up until now it's been OK to be informal about these things, but as we grow it's getting harder to keep up and we need a more formal policy.

 

 

IMHO, allergies and special needs are not privacy issues, in some cases life-and-death issues. Of course they need to be disclosed.

 

The reason I brought it up with regards to privacy was that the mom of the child with the anaphylactic peanut allergy mentioned that she didn't want him to be "singled out" or separated from others because of his allergy. She wants him to be treated like everyone else. I agree that it's a life-or-death issue that needs to be disclosed, just wanting to be sensitive in doing so.

 

Thank you all for your responses so far. You are giving me some great ideas and some things I hadn't thought about.

[Alyeska]

I think for allergies or issues that can be contagious should absolutely be disclosed. Years ago, I was a leader for a children's function at church. We did not know until AFTER a friend of dd's got a gushing nosebleed that the girl was a hepatitis C carrier. Fortunately, my dd (who helped the girl to the bathroom) did not come in contact with her blood. It was running down onto the girl's shirt. I told the father that I had a responsibility to let the other leaders know, and I did so. If it comes to the child's safety or other people's safety, then absolutely disclose that information. All else can be left to the family to disclose.

[happypamama]

I don't really care for the idea of highlighting a child's nametag if he/she has special needs; that seems like too much singling a child out. Kids with special needs don't need to be made to feel any more different. At the same time, in a large group, I'm not sure if there's a better way to handle allergies or the like.

 

Our co-op had about 50 kids this year, and generally, there was an informal policy about allergies or other needs. Typically, parents would let their children's teachers know if there were food allergies or gluten-free needs or whatever, but also, if the teacher knew that food would be served as part of the class, he/she would ask the parents to please let him/her know of any needs. I myself have a child with an anaphylactic allergy to bee stings; it's not a huge issue, since co-op is usually inside, but I absolutely did make the teachers aware of that, in case they went outside for any reason. I have not trained the teachers on epi-pen use, and I keep the pens with me (in my bag, instead of in DD's), but she and the teachers know that if she is to be stung, they need to get me immediately. If I were to leave her (as in, drive away), I'd make sure that someone else was comfortable doing the injections. It's pretty informal, though; I know of a couple of my friends' children who have specific food needs, but I don't know about the general group's food needs.

 

Hmmm, this is good food for thought. I'll bring it up at our next co-op meeting. We don't have an official policy about handling injuries either, because it's a fairly small group still, and most of us know each other's issues pretty well. But we should have an official policy, plus latex-free gloves, on hand, just in case.

[zoobie]

When kids with allergies have been on DH's baseball teams, the coach knows and tells the team parent NO PEANUT snacks and forwards information to the team with any necessary precautions. Basically the parent of the child with the allergy has written the info and the coach forwards it with no identifying information.

 

With a co-op and an anaphylactic allergy, I'd make the whole place peanut free. I would also consider requiring the parent to stay on site to administer the epi-pen if necessary unless you have a nurse on staff.

 

Special needs don't HAVE to be disclosed, but with volunteer (or close) teachers who don't have special education degrees, the child is going to be at a disadvantage unless the parent can offer insight to the class leader. DH had a kid with Tourette's (my best guess) on his team one year. Parents didn't disclose, didn't offer any suggestions, and they sent the kid to practice with a disinterested teenaged babysitter. DH and his assistant coaches had no clue how to handle the child! And this wasn't in an academic setting. We told the drama camp director that DD9 has dyslexia. I was more worried that she have a successful experience than I was over privacy issues.

[fairy4tmama]

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This is exactly what we need. Up until now it's been OK to be informal about these things, but as we grow it's getting harder to keep up and we need a more formal policy.

 

 

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The reason I brought it up with regards to privacy was that the mom of the child with the anaphylactic peanut allergy mentioned that she didn't want him to be "singled out" or separated from others because of his allergy. She wants him to be treated like everyone else. I agree that it's a life-or-death issue that needs to be disclosed, just wanting to be sensitive in doing so.

 

Thank you all for your responses so far. You are giving me some great ideas and some things I hadn't thought about.

I don't know what the mom at your co op means but for me (as the mom of several kids with severe LTFA) I don't want my kids singled out by having to eat at a special table or the " reason " others can't do x.y.z. But it is necessary people know about their allergies.

Just my .02

[Melissa in Australia]

IMHO, allergies and special needs are not privacy issues, in some cases life-and-death issues. Of course they need to be disclosed.

:iagree: In basketball we had a young chap enroll who has hemophilia. All officials were notified, because the blood management rules had to be drastically altered for him. Even a blood nose could lead to his death. Completely different than a contagious disease/privacy concerns. (I was so relieved when the boy only came to one practice and decided it wasn't the sport for him)

[Harriet Vane]

IMHO, allergies and special needs are not privacy issues, in some cases life-and-death issues. Of course they need to be disclosed.

 

 

Life and death issues have to be disclosed.

 

However, special needs ARE privacy issues. The person who lives with it gets to decide who knows what.

[Melinda in VT]

I don't know what the mom at your co op means but for me (as the mom of several kids with severe LTFA) I don't want my kids singled out by having to eat at a special table or the " reason " others can't do x.y.z. But it is necessary people know about their allergies.

Just my .02

 

 

I can understand the kids with allergies not wanting to be known as the "reason" other kids can't do something. On the other hand, it helps my kids to put a face on the reason why.

 

I'm specifically thinking about my extremely picky eater whose main source of protein for years was peanut butter. His palate is slooowwwly expanding and he can sometimes eat school lunch now, but not being able to take a peanut butter sandwich to school for the last two years has been a hardship. He doesn't like sunbutter or almond butter. We've tried. On days when he is very upset about not being able to take his beloved PB&J to school, it has really helped to be able to say, "You wouldn't want Ben to not be able to breathe, right?"

[MyThreeSons]

We have a big co-op -- over 100 families, more than 400 students, lots of teachers and helpers. All of our registration and such is done online. As part of the registration process, parents submit information about allergies, other medical issues, and special needs. Each teacher prints out the information that pertains to her students, and keeps it with her class paperwork.

 

I teach in the high school area, so the kids I'm with are generally able to self-govern most issues.

 

I have seen bulk emails come through reminding parents with elementary kids to not send any peanut products in lunches or snacks.

[GoVanGogh]

I don't really care for the idea of highlighting a child's nametag if he/she has special needs; that seems like too much singling a child out. Kids with special needs don't need to be made to feel any more different.

 

That is my feeling, too.

As I said up-thread, DS was recently diagnosed with a physical disability. He is just now becoming aware that he is different and why he is different. He would want to know why his nametag was highlighted. As his mom, I would hate to have to answer that. Again - I do think it is different for food allergies or common things asthma. But a life-long physical disability? Being singled out like that is too hard on kids, I think.

Maybe when he is older and we have processed the diagnosis, I would feel differently. But being a preteen is hard enough w/o adding in the physical differences.

[LifeLovePassion]

I'm torn. I disclosed some things regarding dd1 before we started K and I feel like I've/we've been slightly outcast for it. And maybe it's just not the place for us, but I can't help but wonder if it scared people off or made it so they didn't know how to respond.

[Mrs Mungo]

My son was 11 last year. I am not even sure he noticed that some nametags were highlighted and some weren't. It was pretty subtle. My son has an inhaler, but he doesn't have asthma. If he had asked, I would have just said, "oh, it is so the teachers remember about your inhaler, if you need it." In our case, the parents chose to highlight the nametags or not and chose what to disclose to the teachers. None of the information was ever shared with the kids.

[GoVanGogh]

Yeah, but when you get into physical disabilities, like c.palsy, it is a whole different ballgame, as far as I am concerned.

Inhalers are fairly common. Hand posturing is not.

Teacher needs to know it, as it does affect class work. But why draw attention to it?

DS has, along with other issues, sensory integration. He would remember everyone's name by the highlighting on the tag, subtle or not. He can attend an outside class and come home and tell me how many pretzels each child ate, along with what color shirt they wore and how many times the phone rang... Such is the wiring inside his brain.

[Mrs Mungo]

I did not say what my son's issues were or whether they make him physically different from other boys his age (they do). But my main point was that our co-op chose to make all of those things up to the discretion of *the parent*. Nobody was forced into any of it.

 

ETA: It sounds more like these are things you are still coming to terms with. It reminds me of the time my eldest was 4 and playing with some girls in the park. She stopped and asked one of them, "what happened to your arm?" The girl said, "I was born without part of my arm." Dd said, "Oh, okay" and they went back to playing. Adults make more of these things than kids in my experience.

[GoVanGogh]

ETA: It sounds more like these are things you are still coming to terms with. It reminds me of the time my eldest was 4 and playing with some girls in the park. She stopped and asked one of them, "what happened to your arm?" The girl said, "I was born without part of my arm." Dd said, "Oh, okay" and they went back to playing. Adults make more of these things than kids in my experience.

 

Oh, I said up-thread that I am still processing and trying to figure this out.

I have only shared with a few IRL friends, but those have suddenly pulled away from us.

It has made it even harder to deal with and makes me question who and how I want to share, if I need to at all.

Right now, DS is very upset by how his hands look and work. Maybe someday he won't be. But he is very much aware that he can't get his hands to work the way he wants them to.

He is also late to get diagnosed. We have tried since he was 2-years-old, but he has a mild form of an odd variation which made it harder to identify, I guess. We had been sent to numerous specialists over the years, but no one could figure out what was gonig on.

I would think if he had grown up knowing this, like the child in your example would have, it would be much different. But to find out at an older age was very difficult.

[Ellie]

 

Life and death issues have to be disclosed.

 

However, special needs ARE privacy issues. The person who lives with it gets to decide who knows what.

 

 

I can agree with that. :-)

[Whereneverever]

 

Oh, I said up-thread that I am still processing and trying to figure this out.

I have only shared with a few IRL friends, but those have suddenly pulled away from us.

It has made it even harder to deal with and makes me question who and how I want to share, if I need to at all.

Right now, DS is very upset by how his hands look and work. Maybe someday he won't be. But he is very much aware that he can't get his hands to work the way he wants them to.

He is also late to get diagnosed. We have tried since he was 2-years-old, but he has a mild form of an odd variation which made it harder to identify, I guess. We had been sent to numerous specialists over the years, but no one could figure out what was gonig on.

I would think if he had grown up knowing this, like the child in your example would have, it would be much different. But to find out at an older age was very difficult.

 

 

:grouphug:

[Alice]

I’m part of a very large co-op. Parents are able to fill out forms that outline anything they want the teachers to know. There are red sheets for life and death kind of issues (food allergies, diabetes, severe asthma). There are yellow sheets for non-emergent issues that might help the teacher or that they parent wants to convey (ADHD, learning issues, etc). The parent decides what to communicate. The sheets are then placed in manila envelopes and given to the teachers of each class that the student is in. The other kids don’t know, no other Moms need to know, etc. The co-op has all the sheets on file though so if an emergency were to occur, someone could quickly access the form to see if that student had a medical condition.

 

Few other somewhat random thoughts...

 

Nut-free is good but I can’t tell you the number of kids I’ve had come in with nut reactions that occurred in a nut-free school. One girl was in anaphylaxsis but the parents insisted it couldn’t be nuts due to the nut-free policy. They didn’t have an Epi-Pen at the school. Later, the girl admitted to eating a Reeses heart shaped candy that a parent had brought in for Valentine’s Day. So sometimes nut-free can make people less vigilant. Everyone caring for the child or responsible for the child should really know about the allergy and what to do even if the facility is nut-free.

 

I’m a believer that parents should also disclose medical conditions that could cause potential emergencies. I’m sure some will disagree and it should be voluntary anyway so people don’t have to do it but I think it’s a good idea. I once was at a homeschool athletic event where a Mom became weak and gradually more and more unresponsive. I was called over to help her and no one knew her well enough to know her medical history. She didn’t have a bracelet and had chosen not to list any of her own medical history on the forms the group used (someone had her form and listed nothing for her). Her kids were young and couldn’t tell us anything. Turned out she was diabetic and severely hypoglycemic. Had we known that we could probably have treated her right away. As it was, we had to call 911, and she ended up needing IV glucose and a trip to the ER since she was too unresponsive to take anything orally. It was really scary for all the kids and adults there and if would have been much less scary had we had the information. In the end she was ok but it was a dangerous and potentially fatal situation.