Need opinions urgently please; school placement question

Posted on: Sun, 10/30/2011 - 7:31am
nicksmom4's picture
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Joined: 10/28/2011 - 14:09

Hello all,

Tomorrow morning I have a meeting with my son's school. I posted on the main discussion board about my son's anaphalaxis episode on Thursday. I am being told by my son's allergist that my son's peanut allergy is rare in it's severity (although I am sure we are not alone in this group!) ..and that he is likely inhalation sensitive as well as ingestion. We already knew he had contact reactions.

My son's doctor said my son MUST be in a peanut free school, but I know my school district will not provide this. I had to sue the district just to get a peanut free class and allow his epi on the bus with him...so this is a request that will go over like a ton of lead bricks.

My options are 1)- find a peanut free school that not only accomadates his allergy but also accomodates his autism. Yes, he is autistic and has next to no awareness of his allergy. This is really compounding the problem as I am sure you can see.

or 2)- try to get one of those peanut-sniffing dogs. and , try to get the school he is in to accomadate a dog with my son at all times.

or 3)- i could homeschool, and I did this for years.I loved it too. the problem was he needs a lot of speech and occupational therapy, and this started becoming a real issue with cost. We paid 100 a week out of pocket alone, and that was just for speech. and, we arent rich. and now, i am going to school, and I am not going to be able to finish this easily if I can't ever drop my son off anywhere. Finding a babysitter for a 13 yr old peanut allergic autistic boy is not easy...

So, I think you all know where I am going with this. I am really stressed and would love some feedback. Where would you go in this situation if you were me??

Thank you so much for reading :)

-Stressed out mama

Posted on: Thu, 11/03/2011 - 10:48pm
cervonil's picture
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Joined: 04/28/2010 - 12:30

Gosh that is a really tough situation. Are there any peanut free schools available? That seems to be the best situation if you can find one.

Posted on: Thu, 11/17/2011 - 2:21pm
pa daughter's picture
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Joined: 11/17/2011 - 20:49

What state do you live in? The reason I ask is because certain states have certain laws pertaining to food anaphylaxis. Food Anaphylaxis is recognized under The Rehabilitation Act of the Americans with Disabilities Act as a disability. Public Schools have this thing called a 504 plan and the IDEA that you could have in place to address your child's autism and food allergy. This guarantees the child a FAPE...free and public education. Meaning that if the school you are districted to go to cannot meat your needs, they are required to pay for you to be where your needs can be met. Check out the info here:
http://www.ldonline.org/article/6108
http://www.fns.usda.gov/cnd/Guidance/special_dietary_needs.pdf
http://www.yellowpagesforkids.com/
http://www.wrightslaw.com/
I urge you to check out the information on these websites. I did this research all on my own and waqs so enlightened.
We recently pulled our daughter from her private prek because the room mother felt it was not her duty to be mindfull of our child's peanut allergy as she placed peanut butter cups into the kids halloween buckets. She stated to me that it was not her responsibility and when i went to the principal about the issue, nothing was done. We decided to pull our kid out of there because being around this parent was like being around a person with a loaded gun. How could someone be so mean?? And what would she expect if it were her kid?
Anyway, I hope this information helps you and I wish everyone here the best of luck!

Posted on: Sun, 11/27/2011 - 12:37am
peanutskill's picture
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Joined: 10/26/2011 - 18:18

My daughter had an anaphylactic reaction to peanuts that put her in the hospital for 13 days. 7 days of which she was on mechanical ventilation. Her reaction caused total respiratory failure. Let me tell you about Peanut Free. It is next to impossible. Even if the school does not allow peanut products not everybody is going to listen. And even the ones who do....may eat peanut stuff before school and there is no telling how long the peanut protein stays in the spit and lord forbid they dont wash thier hands. It is scary. I am trying to work on a peanut dog, cause my docs have pretty much said they dont believe she would survive another exposure. I went 8 years after diagnosis with 1 cross contamination and either another cross contamination or she freaked out cause she thought was cross contaminated and gave herself symtoms (not sure)the school threw away the offending food and told me they werent sure what was going on. anyway good luck and if you would like some help with your school I would be willing to do what ever. My website is www.delaneyspeanutdog.yolasite.com it tells a little of her story and you can contact me through the site, feel free to use the picture of my daughter on a ventilator to your advantage. They also can train dogs to assist autistic children. Where do you live, you should be getting speech and occupational therapy through the school district.

Posted on: Wed, 01/11/2012 - 1:44am
krhodes7's picture
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Joined: 11/20/2011 - 20:17

I am in your situation. We live in Massachusetts. My 4 year old son has a severe PA (has gone anaphlactic to skin contact-touching someone who has touched peanuts before seeing him 3 times) and autism. The doctor put in orders about a year ago that J couldn't be in the same room as anyone who had contact with peanuts 12 hours before seeing him. He got homebased services from the school (tutor and OT) but never got the PT or SLP on his IEP. This year the school is refusing homebased services and we were working with them to get him in school. His peanut sniffing dog will be ready for him at the end of March. After months of fighting and having an amazing allergist fight with us.. The school has now agreed to 1) send a letter home stating that peanuts are not allowed in school-but at this time not willing to enforce it if students have peanut products brought in. 2)give J a 1:1 who is trained to recognize his signs of reaction, carry an epi and benedryl and keep children from touching J's face/hugging/kissing (they are preschoolers) 3) allow his peanut dog- once we get it- to coming in in the morning and sniff out the room and the PT/OT room and playground (I will be in the building with the dog incase he needs to switch rooms during the day) 4) teachers touching J and the school nurse will not touch peanuts before or during school. 5) Prek/Kindergarten will not allow any home baked items in the room for snacks, only packaged labeled foods or fruits/veggies.
We are still fighting the "no enforcement" we have found a peanut free public elementary school near us and requested out of district placement but they are not willing to send him. If they do not agree to send home items staff notice are peanut products then we will be filing and taking them to a hearing due to the fact that they are not giving him his services listed on his IEP.
It has helped immensely to have the allergist letter stating he is medically unable to attend school. Without it we would have nothing. We also will not allow him to attend until its safe. I also had the developmental pediatrician write a letter explaining that although he is very verbal he can not tell us when he is having a reaction. He is home with me in the meantime- I think if he were in school then the school would not be making these accomodations because its "safe enough" for us to send him today, so why not tomorrow. We bring him to OT through insurance and have a social skills therapist come home 6 hrs a week through the autism waiver program- through his insurance.
Also, your son has a right to the services on his IEP (at least in Mass) even if you homeschool, you should be able to bring him into the school for the services- not sure if it is safe for him to do this as the school is- it wasn't for our son.
I still will be panicked when he is in school, but like you I am not trained (although I have my degree in early childhood ed) to provide all the services he needs.
I really feel like the IEP is the only reason we are getting the accomodations we are. I am making sure these are listed on his IEP under accomodations as well as on his 504 so that if he transfer schools the plan transfers too.
Hope this helps.
Kristen

Posted on: Wed, 01/11/2012 - 1:44am
krhodes7's picture
Offline
Joined: 11/20/2011 - 20:17

I am in your situation. We live in Massachusetts. My 4 year old son has a severe PA (has gone anaphlactic to skin contact-touching someone who has touched peanuts before seeing him 3 times) and autism. The doctor put in orders about a year ago that J couldn't be in the same room as anyone who had contact with peanuts 12 hours before seeing him. He got homebased services from the school (tutor and OT) but never got the PT or SLP on his IEP. This year the school is refusing homebased services and we were working with them to get him in school. His peanut sniffing dog will be ready for him at the end of March. After months of fighting and having an amazing allergist fight with us.. The school has now agreed to 1) send a letter home stating that peanuts are not allowed in school-but at this time not willing to enforce it if students have peanut products brought in. 2)give J a 1:1 who is trained to recognize his signs of reaction, carry an epi and benedryl and keep children from touching J's face/hugging/kissing (they are preschoolers) 3) allow his peanut dog- once we get it- to coming in in the morning and sniff out the room and the PT/OT room and playground (I will be in the building with the dog incase he needs to switch rooms during the day) 4) teachers touching J and the school nurse will not touch peanuts before or during school. 5) Prek/Kindergarten will not allow any home baked items in the room for snacks, only packaged labeled foods or fruits/veggies.
We are still fighting the "no enforcement" we have found a peanut free public elementary school near us and requested out of district placement but they are not willing to send him. If they do not agree to send home items staff notice are peanut products then we will be filing and taking them to a hearing due to the fact that they are not giving him his services listed on his IEP.
It has helped immensely to have the allergist letter stating he is medically unable to attend school. Without it we would have nothing. We also will not allow him to attend until its safe. I also had the developmental pediatrician write a letter explaining that although he is very verbal he can not tell us when he is having a reaction. He is home with me in the meantime- I think if he were in school then the school would not be making these accomodations because its "safe enough" for us to send him today, so why not tomorrow. We bring him to OT through insurance and have a social skills therapist come home 6 hrs a week through the autism waiver program- through his insurance.
Also, your son has a right to the services on his IEP (at least in Mass) even if you homeschool, you should be able to bring him into the school for the services- not sure if it is safe for him to do this as the school is- it wasn't for our son.
I still will be panicked when he is in school, but like you I am not trained (although I have my degree in early childhood ed) to provide all the services he needs.
I really feel like the IEP is the only reason we are getting the accomodations we are. I am making sure these are listed on his IEP under accomodations as well as on his 504 so that if he transfer schools the plan transfers too.
Hope this helps.
Kristen

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