Gifted Issues Discussion homepage Forums Twice Exceptional UPDATE - IEP help - academics, PDD-NOS, allergies

So, I can use any help I can get on this one. DS4.5 is due to start Kindergarten in the fall. As some of you remember, he is in special ed preschool right now, mainly for social interaction reasons and has a diagnosis of PDD-NOS, which may or may not be correct (possibly Asperger's, possibly "just" quirky gifted). In 2 weeks we have a "placement" meeting at which his teacher, his OT and his ST and also the special ed director will recommend whether to hold him back (for social / high activity reasons) or whether to send him off to Kindergarten. They are also aware that we are considering homeschooling. And we DO want to give K a shot, simply because he LOVES school. He's not getting anything out of it academically but he loves being with other kids. (I wish he was one of those kids complaining about school since that would make our decisions a lot easier :().

And the placement meeting will also be his annual IEP meeting where we will go over what does or does not need to be done when he is in K. And here is where it gets complicated due to multiple issues.

1. Do we want to keep an IEP when he doesn't have too many problems right now? For practical reasons, I would probably want to keep it just in case he does have issues once he is in K so we don't have to fight for a new IEP and also I want to keep an eye on his pragmatic speech as that is the only occasional squeaky wheel at the moment. (other than constantly talking and always wanting to answer and just wanting all the attention because he just loves school :))

2. He has multiple food allergies for which at the moment he has some sort of a health plan but it is nothing formal. The only formal paper is a note from his doctor at the nurse's office regarding what he is allergic to and how to treat it and when to use the epi-pen and our authorization to give him treatment when necessary. The allergies are one area that REALLY worries me. Even now when he's with only 9 other kids and on a class designated school bus we have ran into issues where contrary to the class policy (no eggs allowed due to his severe allergy) he came home with Valentine's day snacks in his backpack where some of them had eggs in them ... clearly disclosed on the packaging) or when a substitute teacher told him when he wanted a snack he's not allowed that "one or two wouldn't hurt you"!!! And I can only imagine Kindergarten will be a lot harder to manage as he would be on a K-6 bus and in a class with 20 other kids. At least it's only half day so we wouldn't be dealing with lunches yet, only snacks but still. A lot of chances for exposure. They will make his class egg-free again but with our experience, we have trouble relying on the school staff making sure he really doesn't get exposed.

Plus, aside to eggs, he is also allergic to soy, though not as severely but did have an episode in the Fall when he started having problems breathing after having a glass of soy drink! So we will probably put soy on the zero tolerance list because of the reaction he had. (plus a Gluten free / Casein free diet that we are managing on our own but school knows about it and he has it written down by his doctor in his school papers)

So, my thinking is, having a DETAILED allergy management plan of some sort in his IEP to make sure nobody takes any short cuts and because it does affect his education. Plus we are worried about school bus rides as the buses do not have an epi-pen and he can come into contact with kids who for example had scrambled eggs for breakfast, didn't wash their hands and poof, here comes a reaction . Can we request a school bus with an epi-pen on board and trained bus driver??? (I know I could drive him to school but it would not be manageable given our younger one's sleep issues)

3. as of couple months ago, he is now officially allergic to cold (or to temperature changes). And living in Chicago's northern suburbs guarantees periods of serious cold! ... exposure while waiting for the bus ... BAD ... school experiments with cold water / ice ... BAD (After I contacted his pre-school teacher about his cold allergy and our attempt to keep him from any exposure she let him play in a sensory table full of ice and wondered why he broke out in hives. Hmmm, let me think about that ... what part of MINIMIZE EXPOSURE did you not understand?). So, again, I have no idea if this is something we can have in the IEP? When we had deep freeze over the winter, I ended up keeping him home those days because just couple seconds of that cold air outside made him break out in hives again and his face getting puffy. So maybe a note from a doctor saying if temps drop below ?F he will have excused absences???

4. Sleep issues. Something we have been battling since he was an infant and never solved the problem. He has trouble falling asleep and staying asleep. After about 5 months of sleeping only 3-4 hours a day last year he finally started responding to Melatonin but even that is not a sure thing and he has days when he's up all night and finally falls asleep around 4am or 5am and at that point I just don't see it being of any benefit trying to get him up at 7:30 to go to school? It is a long time documented medical issue for him. Not just bad parenting or our laziness or anything like that. Is this something that should or needs to be in an IEP??? If you have kids with similar sleep issues, how do you handle those days when your child was up all night???

Sorry to have made it this long but ... it's complicated . I see it screaming HOMESCHOOLING at me but I know how much he wants to be at school and we really want to try. I am thinking start K in the fall and if things aren't working the way we want them to or if the cold allergy or the other allergies become a serious issue, we'd pull him out then.

I am not even attempting to address giftedness with the school because the gifted pull out program doesn't start until 3rd grade and when I tried to show the school where he's at academically while in preschool, they didn't get it (he's 2-3 years ahead in math and while he's not reading yet, he's almost there. I'm pretty sure he will be reading when he goes to K in the fall). So, basically he goes to school to have fun and learns at home.

There is a chance the school will recommend holding him back due to his August birthday being pretty much the youngest one in his class in K combined with some of the PDD issues but there is absolutely NO way we would hold him back. He's very much ready to fun forward.

So, as I said, any advice would be appreciated. I have 2 weeks to figure out what I need / want. Also, are all these points something I should send to the Special Ed director so she is ready to incorporate it in the IEP as I'm sure she will come to the meeting with basically a copy of his old IEP with minor changes ready for me to sign it? ... She already thinks I'm difficult but we ARE on good terms ... I think? lol

Well, as a long-time parent advocate w/r/t food allergy issues (and atopic conditions just in general), your procedural protections will always be better under IDEA rather than under Section 504.

In other words, if they are willing, I'd definitely keep this under the OHI umbrella as part of an IEP.

Also-- you can formalize your accommodations for food allergy by including the health plan already developed (emergency action plan, yes?) as an addendum/part of the IEP or 504 plan. No reason to not make use of the work that has been done there, KWIM?

I'd also add to that, though, some additional information about INCLUSIVE practices and the cold urticaria/food allergies. You're right-right-right to be worried about escalating risks in larger groups and with the longer day in K+. That doesn't even get into the entire birthday cupcake thing, or food-based curricular elements. Trust me, you'll be glad that you've dotted i's and crossed t's in another few years.

I also know of a really helpful online source to get a LOT of strategic help for those particular issues. I'll PM you.

Agreed!

Hmm, that's a tough one. Before DS went to kindy, we were super worried about all the GT stuff, and then a month before school started we found out that DS has a life-threatening allergy to peanuts, along with other serious food allergies. We didn't worry so much about the peanut issue, but focused on safety re: his multiple food allergies.

As for the bus, in our district the bus drivers were not allowed to help the kids in medical emergencies. They are instructed to pull over and call 911, which isn't all that great if a kid needs an epipen right now. I believe you can get a 504 or something and get an aid on the bus, but we opted to drive our son to school. Rules probably vary by district.

Here's what we did to avoid allergens in kindy: We chose to send all of our son's food and beverages and requested that all peanuts be kept out of the classroom. We asked that all lunches be eaten in the lunchroom. Any class projects involving food were to be run by us for ingredient checks. We supplied the school nurse and the classroom teacher with epipens, letters from doc, lists of ingredients and other names for our kiddo's allergens. We requested that all teachers in contact with our son, including subs, had training to recognize signs of anaphylaxis and how to use the epis. We sent a safe treat box for when birthday treats were sent in, so our son could choose something from the treat box. We sent in safe snacks labeled for our son, plus extras to share. We requested handwashing after the kids at lunch/ate snacks (which has added benefit of reducing germs). DS sat at a nut-free table at lunchtime. There were still some incidents (so and so brought in peanut butter cups even though the Halloween list said no peanut treats, can we give them to the kids as we don't want the kid who brought them to feel bad? I told them they had to serve them outside the classroom).

As for gifty stuff, since we met the spring before kindy, the principal was able to pick a teacher who was good with differentiation. DS eventually got curriculum compacting with the GT coordinator for math (even though technically the GT program didn't start until 3rd grade).

You have a lot to think about! Good luck.

Mk13, I'm in a bit of a hurry and can't respond meaningfully to everything at the moment, but just wanted to mention that the "Health Plan" your ds has for allergies may be more binding and formal than you think it is. Some school districts (ours included) handle food allergy issues through what's called an "Integrated Health Plan" (IHP) rather than having a 504 or including them in IEP accommodations. Our experience with the IHP was that it's been every bit as meaningful as a 504 would have been *here* because the district does honor it in the same way they would a 504.

The flip side of that is - when you're dealing with food allergies and young children, our experience has been that although some teachers and school staff are understanding and care very much about following the necessary protocols... and other adults simply don't believe it and cause problems, and it wouldn't matter if it was a 504 or an IEP or an IHP or um, possibly God lol. Hopefully as time has gone by people are becoming more aware and understanding - but fwiw, dealing with our dd's food allergies during K-2nd grade were every bit as challenging in terms of advocacy as dealing with 2e issues. And very stressful too - I hope your experience is much better.

Anyway, re the paperwork/documentation - I'd ask the schools you are considering sending your ds to what their food allergy policies are, including what kind of documentation/paperwork they require and use. But be sure to ask about logistics, who eats where, what foods are allowed in the classroom etc - all of those questions ultimately matter more than whether or not your child has a 504 or an IEP or an IHP. The guarantee the paperwork offers *is* important, but it's been our experience that the type of paperwork, for this type of issue (not for academic issues) is a bit of a wash - each works equally well from what I've heard. It's the people implementing the plan that are more of a challenge!

Best wishes,

polarbear

oh, and I forgot to mention he catches every virus out there so he spent probably more than half his school days at home sick. At least we know he has no problems keeping up with the school "work" when he only goes in part time! lol

At least the school he belongs to has two firehouses / paramedic stations within half mile so that gives me some comfort. But there is a god chance that our school will be closing after his Kindergarten year and the bus drive (and potential for problems) and the distance from the paramedics will increase substantially, but I guess we will be crossing that bridge when it actually happens.

Mk13, you'll need to know that his teachers and other staff members have been trained in how to recognize allergic reaction symptoms and how to use epinephrine. That would be more of a concern to me than feeling reassured by the firestation location. The other concern to watch out for is to be sure the staff *believes* an allergic reaction is an allergic reaction. We had huge issues with that when dd was in K-1.

polar

DS3 just started his speech and OT at that school DS4.5 will be going to so I can ask about the formal procedures next week. I am going to ask for contact for a gifted coordinator too (if we have such person in the district). All the special ed director has always told me is "don't worry, we deal with allergies all the time ... blah blah blah". But never any specifics outside of what we have going on in pre-school.

this is exactly something I need to bring up with them. I almost forgot! As of right now his Epi-pen is locked in the nurse's office, which for the moment is semi-ok as his classroom is right around the corner but it still makes me very uneasy (should the nurse step out of her office while he has a reaction, etc.) so I want to find out how to keep the epi-pen in his classroom next year (an any other rooms he goes to for music, gym, etc.) and for the staff to be trained to administer it. At the school he will go to most classrooms are located away from the nurse so it is a real concern. I just can't wait for him to be old enough to carry it on him and recognize reactions himself. He's getting quite good at it now. Last time when he had a reaction to cold after getting off the bus, first thing he told me was "I have a bump on my face" and sure enough he just started breaking out in hives.

We got this response too, but then it turned out that they had never really had a kid with life-threatening food allergies and had never been asked to do the things we asked them to do to keep our kid safe. I agree with polarbear in that you will encounter adults at the school who get food allergies, and those who think we're overreacting. We lucked out with having a school nurse who had herself had an anaphylactic reaction, so she was happy to write up a good safety plan, but that doesn't stop incidents such as the teacher thinking it's OK to have exceptions so we don't make a particular kid feel bad, for example.

And be prepared for the teachers to forget. I found that it was good to regularly bring in treats as a sneaky reminder that my kiddo can only eat approved foods. (Hi Mrs. Teacher, here are graham crackers that are safe for DS. I've marked them with a sharpie. Feel free to share them with the class too.)

It begins again with every new teacher, so it's extremely important to make sure your kiddo gets on board and knows all his allergens to the best of his ability. This helped when my kiddo started with a new teacher, who asked a question on the first day of school when my son was 6. DS answered correctly, so the teacher offered him a piece of chocolate. Since DS knew he was allergic to dairy and nuts, he was able to tell the teacher no, I'm allergic to that. I had spoken to the teacher 2 days earlier about DS's food allergies, but it hadn't sunk in yet. The teacher felt horrible and apologized and I brought in a giant bag of substitute safe treats for awards.

I think it's a good idea to try to contact the GT coordinator now, asking for advice. She may have good ideas, if only providing some differentiation instruction to the teacher. Good to get her advice on a teacher too, if the principal will go along with that.