Would you send him back? x posted in learning at school

[Stephenie]

Other thead here: http://www.mothering.com/community/forum/thread/1305907/would-you-send-him-back

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. 

[scsigrl]

I think it is a big thing to ask people not to bring stuff into a communal place.  The reality is that this is not a peanut free world and our kids are going to have to learn to deal with that.  There is a financial part to it.  Some families can't afford alternatives.  

I don't know how long your DS is there but I know my DS is in preschool for 2 hours (12:15-2:15) and they have a snack.  I have NO CLUE why?  They just had lunch and will have dinner not long after they get home.  Can kids really not go 2 hours without eating? So while it drives me crazy, it is a fact of life.  Does your son know about his allergies?  Does he understand he can't eat things unless you send them with him/say he can?  That can be helpful if it would work with him.

I would see how serious the school takes it.  If they seem like they are really trying to figure out a safe what to do it, I would work with them on it as much as I could.  If its a 1:1 ratio, where was his teacher/aid that he was able to get to the nut?

It is scary but I would see what the school is going to do before pulling him.  

[FAmom]

A few thoughts.  And, with the knowledge that I do not have children that need a therapeutic program, which I think adds another dimension to your decision that I haven't had to keep in mind myself.

First, I agree with scsgirl.... if there is a 1:1 ratio, how is your child able to be in a position to almost eat a peanut?  He was part of that 1:1 ratio, where was the other part?  That adult should have been present, aware, and either removed the allergen, or removed your child from the allergen littered area while it was being cleaned up.

Second, you mention he was in a library/waiting room/reception area.  Is there more of a formal library, or another area, that they typically keep more food free?  I would think that there should be more of an area that isn't a free for all, especially for even a mess factor with food.  Could your son wait in another area?

Third, I would actually be very interested, as a parent of food allergic children, in how they maintain their classroom areas.  What their protocols are for food, clean-up, etc., in the area where your child is for the bulk of his time there.  

Fourth, I also would be concerned about the staff having an understanding of recognizing signs and symptoms of an allergic reaction, and their ability to address a reaction if he should have one when you aren't present.

Now, last, and this is my own kind of take, based on my own situation.  Ages ago, we enrolled our 1st son in a nut free preschool.  Which turned out not to be nut free.  We removed him from it.  Immediately.  That, though, is a luxury that we had that I realize not all people have.

It is true that the world is not a peanut free place, and our children with food allergies will have to learn to live in it, and all of the inconsiderate people that go with it.  Young children, however, left in the care of others, in environments that they are stuck at, and too young to read ingredients, or even still be young enough not have the words to convey that they might be experiencing the first signs of a reaction, are dependent on adults doing the job that they say they are going to do, including trusting them for their safety.

[Stephenie]

A few things:

The peanut incident happened in a space where parents wait with their kids for therapy. It's not where they eat lunch, etc. I don't think anyone ever planned for food to be there. The peanuts appeared to have spilled , a few scattered on the table and some under chairs. There is no rule that people can't eat there, but it wasn't anywhere one would expect food.

Here's how it happened. I was standing in the doorway of the library, waiting for DS and the therapist brought him to me, hands me a note and we chat for a second. DS walked through the door over to where his sister is playing in the library. I watch them as I get his stuff all together and then notice the peanut. By then the therapist had walked down to the office. The whole exchange was less than one minute and I and the therapist were watching the whole time, just did not notice the peanuts on the table, where he found them.  The table is tan, so they didn't really show. The room is really small, like bedroom sized and used mainly as a waiting area.

The school's sollution is to not have him go in that room, but I feel that as long as peanuts are allowed, it could happen in any room in the building. Kids put food in their pockets, it gets caught in the their clothes, etc.  They said they would send a letter saying students have nut allergies as different child has a nut allergy, but they will not ask them not to bring nuts or peanuts at this time. He has several other issues, and I am not about to ask them not to bring dairy, gluten, soy or citrus either, but the reaction is stronger on this.

He is aware that he has allergies, but he is not even four yet. He has Asperger's... you really can't expect that he can keep himself safe.

I kept him home yesterday. Today they were supposed to start the new safety plan. He was supposed to be picked up and dropped off at my car to bypass the library, where the director felt he could not be kept safe. DH brought him there. They did not come out when they were supposed to, so he brought him in. I went to get him early today as he had a doctor's appt for updated allergy testing. When I got there, they did not bring him out. I thoguht maybe they had the time mixed up. So I go in, check the class room and lunch room and was told that he was in the LIBRARY. So I go there and yup, he is sitting in there. With the therapist but still, last time the therapist and I were three feet from him. I was told by the two therapists I spoke to that no one had told them he was supposed to be brought outside or kept out of the library. While discussing this, 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.

So right now, I am thinking we are pulling him.. There are other issues I discussed on the other thread, but I am not feeling like communication is strong here. At all. We had a meeting already scheduled for Mon, and I will go to that, but it is going to take a LOT to convince me he is ok there.

[sbgrace]

Wow. The giving meds without cause and without measuring would concern me. The peanuts all around potentially would concern me. Are they telling you they can't have a peanut free classroom and eating space for him or that they can't tell families not to bring peanuts during pick up times and such? I'm a little confused. I wouldn't send him if he has access to peanuts and/or if the aide can't be trusted to be with him at all times keeping peanuts away.

I'm wondering if he's really benefiting from what they are offering anyway based on your description? ABA varies from place to place and it's not the only autism therapy nor the best for every kid anyway.

[Stephenie]

At this point, they are saying they are not going to disallow peanuts anywhere. They just plan to continue the 1:1 ratio and keep him out of the room where it happened. They say that a long-term goal is to go peanut free, but they are not  saying when that might happen. 

As for the program,  I think what is best about it is not necessarily the ABA, though I have seen a tiny bit of improvement on things like eye contact since he started, but what is really benefiting him is the chance to be set up for successful social interactions. No one runs away from him and calls him weird when he talks on endlessly about airplanes. Or gets mad when he won't pretend, or won't look at them when he talks etc. Most social situations are huge failures for my son. This has not been. I want that to keep happening. But I wonder if one on one ABA and a social skills class wouldn't be just as good. And maybe more useful to the family since I would be able to be more active in the ABA. 

[scsigrl]

That the aids weren't informed and the med thing would be totally toppers for me.  As I said, I understand that age and ability may play a part in what a child eats.  We have a very strict "No food unless Mom packs it!" when my DS started school.  I put that upon him AND the school knowing the school really needed to be the enforcer in it as he's still freshly 4 as well.

I agree that it sounds like communication is an issue and till/if that was resolved, only then would I reconsider sending him back.

Have you considered a 504 plan with the school?  It's a legally binding agreement on safety issues for you child that they are required to follow if they accept government funding.

I am so sorry you are having to choose between this therapy and your child's safety.  That is no choice any parent should have to make.

 

[Stephenie]

I don't think a 504 plan is an option. It's not technically a school, but a therapy program for preschool aged kids. No teachers, just therapists. And it's private. I could try to find out if they get any funding at all. They are a non-profit, I don't know if that makes a difference.

I always tell him he can't have food unless we give it to him, but he has huge oral motor needs and picks up and chews all sorts of things.

I have been looking into other therapy options, none seem to be quite as good of a fit as this, but if he is safe that's worth the extra drive/ money/ change in program etc. A few of the programs would allow me and my daughter to be present the whole time, that would really help. For now, I am just looking and will see what comes out of the meeting on Monday. I just don't know what they could say to me to make me feel better at this point.