Would you send him back?

[Stephenie]

* this could go several places, so feel free to move it if it fits better somewhere else...

My son attends a 4 day a week, 5 hours a day drop off ABA  therapy program for preschool aged kids on the autism spectrum. It's a very small program with a 1:1 student to therapist ratio. 

He has a lot of sensitivities and allergies. We informed the program director of these and she felt that because of the 1:1 ratio that they could safely handle him there.

Yesterday when I was picking him up, as I was gathering his backpack etc, I noticed he was putting something in his mouth. I grabbed and noticed it was a peanut. He previously broke out in hives from peanuts, though allergy testing reported back negative results for a peanut allergy. We were told to treat it like an allergy and the therapy program was aware of the possibility of a reaction from peanuts. 

I looked around and noticed that there were peanuts all over on the floor and table of this room (library/ waiting room for drop off/ pick up.) I grabbed him, told reception what happened and took him down the street to get benadryl. By the time I got it in him he had some hives already forming. When the first dose wore off, he itched so bad that he scratched until he bled and I had to keep giving him more meds throughout the night as the hives kept coming back. Incidentally, it was his sister's birthday and all of  the fun was kind of ruined by this as DS was crabby and groggy from the meds.

Anyway, I emailed the director and his case manager and told them what happened. The director got back to me and apologized for what happened. She said that instead of doing pick up and drop off there, they will bring him to and from our car. She said they can not go nut free at this time, but they will send home a letter to the parents of the other kids letting them know that there are children there with nut allergies.Not asking them not to bring nuts, just telling them. They said a long term goal would to be work  towards being nut free but not now. 

I am trying to decide if I feel like that  is enough to send him back. I am nervous. He stayed home today. I don't get why it is such a big deal to ask kids not to bring peanuts to therapy. I worry that if they made it into the library, they could make it into the main room or therapy rooms just as easily. Or the school room. What if a kid drops his peanut on the floor and my son grabs it? Preschoolers kind of shed snacks, dropping them here and there... what if a kid eats some at lunch and then it  falls on his lap/ he puts it in his pocket etc and it falls somewhere else  and my son finds it? What if the therapist is not as vigilant as I am about watching him? I have a lot of legitimate fears here. 

On the other hand, he needs this therapy. There are not a lot of programs around like this one and waiting lists are long. I am about 75% happy with the program otherwise. 

[sapphire_chan]

Does the director know that peanut allergies can get worse with time and that his next exposure might be the one that closes his throat?

I get that doing what they do they might have a kid who will literally only eat peanuts. But with 1:1 therapy there is no excuse for your ds to have been in a room with peanuts let alone in a position to pick one up.

I'm very very very sorry to have to have this opinion because I know how much I need the breaks I get from my dd and I know your ds needs the therapy, but I just don't think he's going to be safe enough there.

Since he does need the therapy, and the therapy is good, is there any chance in the world that you could stay with him there?

[Stephenie]

I wish I could stay, but if I do, I can not have DD with me. There is no way I could get her childcare 20 hours a week. We have no family here and almost no friends and this therapy is already taking all of our extra money, so paying for it is not an option. 

His case manager seems to understand a bit and say she has a serious allergy as well. 

No one ever imagined food would be in that area, it should not have been. But that is even more worrisome than if he found it in the lunchroom in some ways. If he can't be kept safe where food is not supposed to be kept, can he be safe where the food is? I am just stressed about it all. 

[sapphire_chan]

He was were food wasn't supposed to be, they have a plan in place to keep him under supervision the whole time, and the person responsible for the supervision is experienced with allergies?

Hmmmmmm.....

Have them write up a plan, then present the plan in the allergy forum along with details of how your ds reacts, and get it critiqued, then decide from there if things seem to be on track enough.

If they do seem to have a good plan in place, then get a supply of Benadryl there for your ds (get a prescription if that's the rules of that place for giving kids medication) and tell them to call you ASAP if they have to use it. Even though you'd need to pull him out of the program at that point, explain to them that it is just in case a topical or airborne (heaven forfend) sensitivity develops.

Honestly, I'd assume that the big problem was that they weren't expecting food and didn't see it as a result. They've likely been extra careful with sitting him at tables where no one has a peanutbutter sandwich or peanuts in their lunch, and just weren't thinking there could ever be peanuts in the waiting room.

For that matter, x-post about this in the allergy forum because I'm just thinking out loud here about what I *think* would give me confidence to continue if I were in your position. But I haven't actually been there.

[Stephenie]

Thanks for your input, I am going to cross post it.

I did send him today, but only for a short day as he has a doctor's appointment. We had a meeting set up already to talk about his progress on Monday, so I am going to have time then to really talk to them about this situation.

I am really stressed about it all still. One of the problems is that he works with several different people a day. And he has other very serous medical issues that I found out that not everyone knew about when I mentioned something to one of the therapists working with him just the other day. (he has seizures with fever and had a brain injury at birth, because of that injury, even a febrile seizure could potentially kill him, so even if he is a tiiinnny bit warm, he has to be medicated with tylenol and motrin, which are always in his backpack. He was just getting over a cold and I reminded the therapist of this all and she had never heard any of it. Not ok...) So I worry that not all the therapists will be aware enough of the allergy issues either. We have a LOT to talk about Monday.

Incidentally, another program I looked into before we enrolled him in this one just emailed me to say a spot was open. It's actually the one his developmental ped suggested so I may go check it out. We never even toured before as there were no spots.

[syn_ack89]

They sound disorganized. They seem rather cavalier about the allergy. I would definitely check out somewhere else asap.

[purslaine]

I am shocked they have a child with a peanut allergy but continue to allow peanuts in the school.  That would never fly around here.  It is particualrly stressing because children on the autism spectrum are often:

-orally fixated

-do not process that they should not eat certain things.

I would want to pick up in the classroom so I can see what the classroom looks like.  I am cynical that way (but they seem  a little cavalier about the whole thing so my cynicism may have merit) but I would want to see the classroom to know there are no peanuts around.

Edited by purslaine - 3/31/11 at 11:10am

[Stephenie]

When I went to pick him up today, they did not bring him out to me as they said they would. We had a doctor's appointment and were picking up early, so I thought it could be confusion on time. I went inside, checked the classroom and the lunchroom. He was not there. A therapist saw me and told me he was in the LIBRARY. You know, the room where he got the peanut, the room they told me they could not keep safe for him so they would not allow him in? That room. UGH. The therapists both seemed totally unaware of any plan to keep him out of the library. I just sent a less than happy email off to the director and case manager... but right now  I am guessing this is the end of his attendance there.

[velochic]

I just wanted to point out that peanuts are not the same as "nuts".  "Nuts" are tree nuts and peanuts are legumes (beans).  You may see similar reactions to other beans in the same family as peanuts.

Having a school go "nut"-free is a lot different than having a school go "peanut"-free.  If you pursue this at the school make sure you do your homework so that there is no confusion.

My dd also has allergies and food intolerance (I do as well).  Dd is in a school where there are a *lot* of allergies, including some odd ones that would be almost impossible to eliminate.  I think the solution is not to prohibit every single ingredient that anyone is allergic to, but to have a good system of identifying who has the allergies and keep them away from their allergens.  It can be done.  In my dd's school, even peanut butter is still allowed and they've never had an incident.

[purslaine]

Originally Posted by velochic 
  I think the solution is not to prohibit every single ingredient that anyone is allergic to, but to have a good system of identifying who has the allergies and keep them away from their allergens.  It can be done.  In my dd's school, even peanut butter is still allowed and they've never had an incident.

I think this is tricky no matter what .  Do they have kids wash their hands after meals?  Do they supervise it?  Do they wash the tables properly after every meal?  Are kids with life threatening allergies segregated from the other kids (fun for them!)

It is difficult in many schools to ensure safety of kids with severe allergies - which is why many choose to go the the no peanut route.  I think with young kids that is certainly the best idea.

With autistic children I do not see how it is possible to ensure safety without banning peanuts.    As I mentionned above, many of them have oral issues and will pick food from others plates or off the floor without any qualms.  I once saw my nephew (ASD) grab food from a strangers plate at a restaurant.  I do not expect restaurants to go peanut free - but a school where an autistic child spends numerous hours a day?  Yup.

[whatsnextmom]

Originally Posted by velochic 

I just wanted to point out that peanuts are not the same as "nuts".  "Nuts" are tree nuts and peanuts are legumes (beans).  You may see similar reactions to other beans in the same family as peanuts.

Having a school go "nut"-free is a lot different than having a school go "peanut"-free.  If you pursue this at the school make sure you do your homework so that there is no confusion.

My dd also has allergies and food intolerance (I do as well).  Dd is in a school where there are a *lot* of allergies, including some odd ones that would be almost impossible to eliminate.  I think the solution is not to prohibit every single ingredient that anyone is allergic to, but to have a good system of identifying who has the allergies and keep them away from their allergens.  It can be done.  In my dd's school, even peanut butter is still allowed and they've never had an incident.

It depends on the severity though. When I taught preschool, we dealt with a lot of different allergies. Some were easy to manage without banning from the full classroom like an egg allergy. We were peanut free as a rule because it was so prevalent from year to year. At my DS's school, there is a fully peanut free class and lunch table at the school (no one in that class can have peanut butter or peanut products at all because the allergy in the child is so severe.) At my kids theatre program, there is a peanut butter ban because the oils spread so easily but ou can have cookies and such with peanuts in them unless there are children who need that eliminated too. We do sunflower butter instead and the kids have no problem with it.

To OP, I'd probably not return to a preschool that found dealing with allergies that overwhelming. There are plenty of programs in our area that are peanut free whenever they have reason to be and it's not a big deal.

[sapphire_chan]

They didn't even follow through on the ONE safety check they came up with? And there's a spot that just opened up in another therapy school? Perfect timing!

If the other school wasn't opening up, I'd ask if your ds would be okay with a label taped to the back of his shirt so that all the therapists could be reminded.

[Stephenie]

ASD plays a roll here for sure... he will put all sorts of things in his mouth. An adult does sit with him at lunch, but it takes just  a second for someone to turn their head for him to snatch another kid's lunch. He's not even four and explaining it to him and the other kids will probably not solve anything.

He has a lot of other allergies I would never expect people to keep out, gluten, dairy, soy, citrus and laytex... but his reactions are less severe.

Another incident that has me upset from pick up today: While discussing the fact that he should not be in the library, the therapist says that Keagan said he had a fever. I feel his head and he's not warm. He carries Ibprofin and tylenol because he has a brain injury and febrile seizures. If he has a seizure from a fever, it could kill him because of the brain scarring. Anyway, he had found it in his bag, likes the flavor and just wanted it. No fever. I tell therapist he is ok. She agrees, said she just wanted to check with me and he probably just wanted it because he saw it. I turn to the other therapist for a second and she gives him some anyway! Didn't measure, just stuck some in the cup and gave him "a bit." I was too shocked to do anything but shake my head no at her, and probably should have done more. That was so wrong in so many ways. One, she just gave it to him to pacify him. He is there to learn social skills, self control etc. Sometimes the answer is no, he needs to learn not to have a fit every time he does not get his way. That is not helping . Second, he just heard ME, his mother, say no. Then she gives it to him. Totally undermining me.

I do realize that nut free and peanut free are different, I am just repeating the language they used. I think that the other student at the facility with an allergy is allergic not nuts, not peanuts, but I am not sure. I had planned to talk with them about it at our Monday meeting. Right now I am still really frustrated and am going to at least check into the other school. I don't think he can stay there.