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.

One of the schools DS was in was laid out so that he had some activities really far from the nurse's office. They agreed to have an epipen in the far-away area. The teacher kept one in her desk too. I would argue for no locks on the epipen storage.

One thing to check on is if your school district has a sp ed bus. Our school district has one and it stops directly in front of the child's house, and waits for the parents to bring/escore the child out, then the bus driver helps them get settled (if necessary). I would imagine this particular bus driver has to have some level of training/awareness of the childrens medical needs.

yes, I think there is something like that for the bigger kids too! He's on a special ed bus now but it's only dedicated to his little preschool class and the bus driver is great and understands all his issues. We even have an agreement when she'd text me if the bus was too cold when we were dealing with -20F windchills.
Maybe this would be a great option for the next few years before he's in that age when the neighborhood kids would start to single him out.

st pauli girl ... DS is really great at reminding everyone about his allergies too. It helps that he knows I have a lot of allergies too so he has learned to look out for me as well "Mommy, you can't have that! You are allergic to it!" and he is in a habit of wearing an allergy awareness bracelet with all his allergen foods on it and he is the one mainly responsible for putting it on in the morning.

I was also thinking about getting couple of those "I'm allergic to ... " "don't feed me ... " tshirts to wear at least at the beginning for the teacher to be reminded of it on a daily basis and to wear at other occasions so I can stop constantly hovering over him.

Also, how did you handle field trips? I am inclined to NOT letting him go on field trips this little simply because there will be too many risks (other people going there, cross contamination on the bus, at eating areas, etc.). One option would be me going as well but they don't allow siblings going along and I don't have anyone to watch DS3. So unless the school would guarantee there would be a trained person going on the field trip, I am just not comfortable to let him go. Or am I taking this too far? Just as some of you, I have had far too many experiences where the allergies just weren't taken seriously and we ended up with a few very close calls.

When DS was in kindy, when kids were messier, my DH or I went on all the field trips. Since then, I've tried to go on as many field trips as possible, because I like to get to know his teachers and classmates and it's fun, but I haven't been as worried once I got to know that teacher and they understood his allergies. I sign every permission slip with "as long as his meds are with him". What makes me most comfortable is that we still send all his own food and drinks (he's in 4th grade now). He sits with his class in the lunchroom now. His friends know about his allergies, too.

Depending on how sensitive your kiddo is, something else to check into is whether the rooms your kiddo will be in will have his allergens. (E.g., specials, gym, other classrooms, library.) When I picked up my son from an afterschool activity in the library, I found little cups of peanuts in there. The kids from the afterschool care were allowed to bring their snacks into any of the afterschool activity rooms. (Since I brought this up, they have since changed the plan so that the afterschool care kids must eat their snacks in the lunchroom only.)

We have not had a more serious reaction in over a year (not counting the breathing problem episode after soy milk couple months back). Eggs are our main concern and we try really hard to avoid them at all costs as the last two reactions to eggs he had were from simply my husband making scrambled eggs in the kitchen and DS's face starting to get all puffy and upstairs just from the air circulating from the hvac vents . After two of these reactions we just went completely egg-free in the house too. Until then my husband or I would still have eggs occasionally and then wash everything including us really well. I am planning on another round of allergy testing sometime in the summer ... we do it about twice a year since in the meanwhile new allergies seem to pop up.

He's also allergic to some antibiotics, I guess that needs to go in the plan too should he ever need emergency care.

I don't have any personal experience with life-threatening allergies, but at DD's (private) school they do take them very seriously b/c there are a couple of kids who have them. DD was quite fascinated by a classmate when she was younger who has severe peanut allergy--I guess the teacher talked about it or maybe one of his parents came in and did a presentation, but for example "he could never go to the Texas Road House" (because they have giant barrels of peanuts as soon as you get in the door). So all the kids knew about this kid's allergy, and we weren't allowed to put anything with nuts in the kids' lunches, snacks, or special-event stuff because they didn't expect the (1st-3rd grade) kids to be careful enough to be safe and not share, etc. It really wasn't that hard to work around, and the kids all seemed to be really interested in helping this kid avoid nuts! Now that they are older (4th-6th), kids are allowed to bring things with nuts in their lunches because the kids are old enough to know to not share (is the rationale).

BUT they have the epi-pens in each classroom in a bag next to the fridge, with the kids' names on them, and everyone including the subs is told about them and how to use them. So they are in clear view and ready to grab and use--no trying to figure out where the nurse is, where she keeps the epi-pens, etc. If you can't get the school to do that (or it's against the rules for some reason), I have seen 'necklaces' that have the epi-pen attached that fits down inside a shirt (so it's not so obvious)--would that be okay with the school? I think it's a valid concern how long it would take someone who may not be that familiar with allergies to a) recognize an allergic reaction for which an epi-pen would be appropriate; b) realize they should be getting the epi-pen rather than just calling 911; c) try to remember what room the epi-pens are kept in; d) go there; e) find the epi-pen; f) rush back to where the kid is and administer it; and of course g) hope it takes effect in time. Actually having said that it kind of seems like the kind of thing that should be rehearsed every now and then, like a fire drill, just so any kinks can be worked out. But I'm not sure anyone actually does that.

Sorry, I'm not trying to make anyone nervous, it's just that if you think about it it really does seem like something that should be taken more seriously.

Dbat, he will be self-carrying once he's older. But at just turned 5 years old when he starts K in the fall, there is no way we could let him carry it. Can you imagine the disaster when he out of curiosity would open it and use it on himself or someone else? Or any of the other kids took it from him . So, there will definitely be a time when he will have it on him but probably not until say 3rd grade or so. But I love the idea how it's displayed in your daughter's classroom!

There are going to be some things you can plan for and use in your decision making as you look at schools, and other things you are going to have to plan-as-you-go - field trips might be one of those type of things. Our kids' elementary school didn't have buses so parents always drove on field trips. I went along on field trips and drove kids in my car so I could be sure my dd had a safe car to ride in (and an epipen-trained adult in the car). You might find that there are other parents of kids with food allergies - there was another mom in my dd's kindergarten class who's child was ana-allergic to peanuts, so she also had a "clean" car and knew how to use an epipen, so I was ok with dd riding in her car.

The thing you can't predict ahead of time are the bizarre ideas/policies etc that might crop up at school that you never think to ask about. This happened with us and field trips. I didn't think about it on the first few trips because I was carrying an epipen anyway for dd. The school packages up epipens/meds etc needed for each child and gives them all to the teacher to carry. So this other mom and I had been driving our own kids and not worrying about those epipens because we had our own in our cars. Then there was a field trip where I wasn't going to be driving but the other mom was. BUT - she didn't have an epipen with her that day and she asked to get the meds for her ds and my dd to carry in her car... and... the school wouldn't let her! That's how we found out that the only person authorized to carry student meds on the field trip was the teacher, so if we were going to send our dd on a field trip where she was riding with another parent who didn't carry around an epipen for fun (joke about the fun part!).... dd would be riding in a car without an epipen.

Soooo... little things like that seemed to always be lurking - so you can plan for as much as you can predict, but also know that there will be things you can't plan for until you find out about them! But I'm guessing you've probably already experienced that!

Best wishes,

polarbear

Whoahhhhhh.... "locked" is really, really, REALLY bad.

Our DD has been wearing her epipens since she was not quite 3. Our rationale (suggested by our allergist, actually, in light of her super-fast and super-scary reaction history) is that you want your instincts to lead to the RIGHT (and best possible) outcome-- so what would you do if the allergic child appeared to be in distress? Run to him/her to find out what is wrong, right?

Anyway, locked is really bad. The reason is that you have to ask-- just how long would it take in a worst case scenario to get to them? Next IEP meeting, if you get pushback on having a set in the classroom, calmly ask them to PROVE IT to you that such a thing is unnecessary. Bring a stopwatch.

If it takes them more than 1 minute to get that epipen in front of you-- it's too long.

I think what I read in the school policy was kids that self-carry also have to self-administer. Which is why we didn't even consider him carrying it ... that and the fact that he wants to know how everything works so I cannot trust him with it just yet! lol But I will push for having it in his classroom and the teacher or aid or someone take it wherever they go.

Another thing I thought of too... If your child does any afterschool activities, the nurse may not be there. I have felt comfortable doing these things for my son when they have not been food related, and I talk with the instructors ahead of time and tell them about DS's allergies and his epipen. DS has an epipen in his backpack, which he takes with him to the afterschool activities. This possibly wouldn't be allowed if I went through any official channels, as I don't think the kids are supposed to self-carry in DS's elementary, but that's what we do.

The schools DS attended had this same policy, which is why we don't have DS self-carry at school. Really, if someone is having a horrible ana reaction, which may include passing out, how can they possibly self-administer?

lol that reminds me of my verbal agreement with DS's OT he goes to every other week. When I need to leave him there alone for a bit, I leave the epi pen there and I promised the therapist not to sue her if she ever tries to save his life! And I KNOW she is ready to break their own office policy should the need every arise.

Good thinking.

Yeah, kids are ready for self-carrying (and later, self-administering) at different ages. It's very individual.

The field trip thing is hard. We basically look at ANY disruption to standard routine as being high risk. So, with that in mind, holiday parties, field trips, testing days, substitute teachers, etc. are all higher-than-usual risk for human error. You'll want to build extra safeguards around those things-- probably spelling out responsibility for meds, for checking on safety, etc. much more explicitly than in the usual school day.

This is why in-class surprise treats are so problematic. Many parents choose to have a "treat box" for their child in the room, but there are a few things to think about with that choice. Who will have access to it? I've heard more than one story about safe treats being replaced with not-safe look-alikes by a well-meaning staffer that raided the stash. Also, at 6-8yo, a lot of kids begin to REALLY dislike being different, and for them, the safe treat box becomes an emblem of exclusion... and you can bet that the adults in the situation think nothing of leaving your child out several times a week (without even telling you) if your child has a safe treat box.

Thirdly, there are teachers who simply FORGET to let the child get anything from the box. Subs may not know it exists-- and may give your child unsafe items along with his/her classmates.

I'll second the notion of REALLY not trusting school staffers to decide on food safety. They don't have the day-to-day experience to draw from, so they are far more likely to make mistakes. What works well for some parents is to use a STICKER to indicate to the child that a particular food item has been checked and approved by mom/dad. Another word of caution there, though-- be wary of cross-contact in handling/serving of group snacks. It does no good to have 'safe' tortilla chips sitting next to the eggy veggie dip and a crowd of people reaching into the bag. KWIM?

They can't. Which is what we STILL tell people-- and my DD is almost 14.

It's a stupid policy, for sure-- but a common one. A good allergist can find ways around it, though, such as treatment orders reflecting a need for "immediate" access to emergency meds, but without an expectation of self-administration.

My daughter has had multiple anaphylactic reactions to trace amounts of several foods, including and especially eggs. We did about 1/2 year of a public preschool program, secured a stellar 504 Plan, and then pulled her to homeschool. A few comments:

First, I don't know the interaction of IEP plans and food allergy plans because my daughter didn't qualify for an IEP. I will say that I would be very leery of only having an Individual Health Care Plan to address the food allergies. A 504 Plan (or IEP) has legal teeth. The school district MUST follow it with consequences if they don't. An IHP has no legal teeth. They are being "nice" and doing you a "favor" with no consequences if they ignore it. Also, a 504 Plan protects your child's right to "participate and access" school, unlike an IHP. A 504 Plan ensures your child doesn't sit in the principal's office or hallway while everybody else has a Winter party or goes on a field trip.

Many people find that the plan they initially get is the plan they get for the remaining school years. School's tend to be inclined to say whatever accommodations they have done in the past are sufficient for the present and future years. I approached our 504 Plan (or food allergy protection in an IEP) with that in mind. I needed to get NOW what I was willing to live with for my child's remaining school years.

Even with that, I decided not to utilize the bus. Too many kids eat eggs for breakfast, so the risk, I felt, to my child was very high. Even though they would have the bus driver trained and willing to administer an Epi Pen, they wanted to simply keep the Epi Pen on the bus. I feared that however carefully I explained how putting the Epi Pen in the glovebox during subzero (-30 degrees F) that for convenience my daughter's Epi Pen would end up being kept in the glovebox. The risk, of course, is that then the driver can go through all the motions of giving her an Epi Pen, but with no effect, because the medicine has been rendered inert by the extreme temperatures in the glovebox.

I would fight to the end to get the Epi Pen unlocked. I pulled research articles in pediatric allergy journals that cited locked Epi Pen's as a very dangerous practice that led to deaths. I also found their own regulations stating that Epi Pens must be kept unlocked and instantly accessible at all times. When a child is in rapid demise, you have a very, very scary situation. Fumbling to open locks and fumbling to find the keys can have catastrophic effects.

I would also be very careful that the school doesn't have a policy that only a nurse can administer the Epi Pen. Because our school had a nurse a few doors down from my daughter, they were firm that only the school nurse could administer the Epi Pen. Even with two school nurses in the building, invariably one is administering flu shots at a different building and one is sitting in the lunchroom because she needs a 10 minute break. In short, times invariably occurred where NO ONE was available who could give my daughter an Epi Pen.

Again, that article in the pediatric allergy journal that examined the dangers of school for kids with anaphylaxis and the key deficiencies responsible for fatalities at school assisted me greatly. That article cited a failure to train multiple people how to use the Epi Pen as a major, dangerous deficiency found in some schools.

I found it very helpful to keep away from "what mom wants" and point to "what pediatric allergy research shows" and other studies, like Massachusetts study and suggestions for preventing food allergy fatalities in schools, to get the measures implemented that I wanted. That approach, I felt, even more so because I presented it in writing, also put them in a position that they hopefully knew that if they refused to correct known "major deficiencies" that resulted in death/severe consequences to any child that they were in a precarious position.

I also would caution you to consider emphasizing that ANAPHYLAXIS LOOKS LIKE ASTHMA!!!!! A chilling cohort of kids die because it looks like they are having an asthma attack. They even say they are having an asthma attack. They and others grab their inhalers. They frequently die because what appeared to be an asthma attack was actually an anaphylactic reaction. I asked the head of a pediatric allergy clinic how I could distinguish (and tell others to distinguish) between an asthma attack and anaphylaxis. She said they are indistinguishable and told me that I should treat an asthma attack with an Epi Pen if there is any chance that my daughter has ingested her allergens. (Of course, double check with your own M.D.) But I had her write that into the emergency action plan for the school.

Hope this helps.

I would be careful about Epi Pen's on buses

Thank you again all for the great suggestions!

So, with any recommendations / notes from the doctor / allergist ... I should have all that ready prior to the IEP, right? To give the team heads up and to save us from having to meet again?

YES. Have copies available to "share" with "the team."

Go in with a bullet-point list that goes (from most to least critical) down your list of "must" haves, and make SURE that they hear all of it. If necessary, pleasantly offer to continue at a second meeting.

Don't be pressured into signing anything without thinking it through.

INSIST that the health plan be made part of the IEP. Your child qualifies as OHI (other health impaired) because he would otherwise have a 504 plan. He is NOT able to care for his basic needs to the same degree as same-aged peers.
Mom2277 makes exactly the same points that I'd encourage you to consider.

It might help you to actually visit your child's school and 'walk' through a typical school day-- that way you can take careful notes of hazards that aren't apparent to other adults. (Egg cartons for science projects, mayo jars recycled to hold paint brushes, etc.)

One more helpful thing to take a look at is Rhonda's outline:

http://foodallergyadvocate.com/

I've known Rhonda since ~2002. She is AMAZING. And thorough. Read through her version of a food allergy 504 plan-- cross through those things that don't seem to apply, but she WILL make you think of things that you'd otherwise miss.

One thing I'm not sure how to handle ... Nick's current pre-school teacher will be in the meeting so I am not sure how to address the issues we've had while he's been in the class without causing trouble for her (she is nice and trying hard) plus he still ha 2 months of school left in that class. Or maybe I should just completely avoid mentioning the incidents (unless they come up) and concentrate on next year? I just feel that if I did mention them, this whole thing would be taken more seriously.

I did previously mention to the special ed director that we are considering homeschooling because of all these issues and she really wants DS in school (citing the usual socializing concerns) so it's only up to them to man up and provide a TRUE safe environment!

No, I would use those examples. Be professional about it, of course, and sympathetic--

Wow, I just KNOW that none of these things would have happened if {Teacher} had been working from a document with clear expectations and protocol...

See? You're doing them a FAVOR by insisting (patiently) that it all be in writing in one document...

Keep it! As a child on the autism spectrum grows, issues often become apparent that weren't apparent before. There is a big leap into K and again into 1st about expected classroom behavior and skill in following instructions and getting along with others; there are likely to be bumps or places where you find a skill is missing. The IEP lets you address those as they arise.


Totally. The teacher needs training and access to the Epi-Pen, as do any others who look after him throughout the day. In our school most teachers are trained.


There will be other kids in K who are also reading; the math is more unusual. I'd say your chances of getting anyone to notice before or during K are slim; as long as he's happy, work on the social skills and know that there will be time to make adjustments.


Here it would actually be a violation of procedure for the school to suggest holding a kid back. They are required to accept all kids who are of the right age.


Definitely work out the allergy stuff in advance. It may also be worth envisioning what you want in terms of social and behavioral and communication goals.

DeeDee

DeeDee, you must be a psychic or someone who can see into the future? lol There was an incident at the school today and I only found out about it from the school bus company and not even the school! About 20 minutes before the bus was supposed to come to bring DS home I got a phone call from the bus company letting me know that the teacher/s had to carry DS onto the bus kicking and screaming and the driver wanted to give me heads up about it so I wouldn't be surprised when he came home all agitated and that the school would probably call me with the details of what happened. When the bus came, he was calmer but still upset and his face all covered in hives from the anxiety. When I asked what happened, he said his new job was the "door holder" (the kids all get a new job for the week every Monday and his job was the door opener / holder) and when they were leaving the school the teacher opened the door instead of letting HIM do the job. ... seemingly unimportant thing except when you have a kid on the spectrum who is a stickler to the rules, especially when it is a school rule. So, he had a meltdown because he didn't get to do his job and they carried him up, put him on the bus and that was it. 5 hours later and I have yet to hear from the teacher / school. I have done my share of carrying him into his room to calm down but I do make sure I explain to him WHY it is being done and usually I can reason with him over things so I can avoid these situations. He does calm down when he understands what is going on.

I know I am probably overreacting but I don't think this is the way school should had handled it. Had the bus company not called me to let me know about what happened, I'd been pumping him full of allergy meds thinking he had an allergic reaction to something seeing the hives on his face! Plus if this is the way they handle issues like these, there is NO way I would let my younger one who also qualifies for the program in. He can't really verbalize what's happening during the day and the slightest things upset him. No way would I let anyone handle him in this way!

Since I have no experience with this, am I correct to be concerned? Or is this how your kids' schools would handle it too?

Now, back to the IEP topic ... this is something I need to address in the IEP to make sure things are handled well. Those of you with kids on the spectrum or with similar issues when the kids are very particular about certain things, very literal, etc. ... what do you have in your kids' IEPs as to how to deal with these situations? We never had to address this when we put together the current IEP but back when we did (in the Fall) I was worried that these problems would come up and was told we would address them if the need would arise.

Only insofar as my DS with AS is 10...


I'd want a phone call about that, from the teacher, right after it happened. Is this the special needs preschool (or is that the other kid)? Is it typical for him that being angry makes him break out?

This kind of rule-based meltdown is totally characteristic of preschool/early elementary kids on the spectrum. How often does this happen with your DS? If more often than rarely, handling it has to be written into the IEP, for his safety and to help the teachers do the right thing.


Part of his social skills training will have to be learning that jobs like that are guidelines, not rules; that if you're wronged, you can speak nicely to the person who you feel wronged you (sometimes), but you can't flip out at them; often you have to swallow hard and go with the flow; things like that.


You will not be able to mandate that the school handle things as you would at home; the relationship is different. However, you can create, either within the IEP or as a behavior plan, a list of strategies that help your DS.


I don't think you can generalize that this is always the way they handle things. (It sounds less like a policy and more like "oh no, the bus is here" and a snap decision on someone's part.)

But you should give the teacher a call, and discuss what she saw, and what she did. Then you can make a plan with her for what happens the next time his social rigidity gets in his way to the point of meltdown: best strategy for calming him down fast, what to do if he doesn't calm down fast, etc.


First of all: we had a home ABA program in which flexibility was the #1 goal. That enabled all other progress.

The Present Levels in the IEP should describe his current skills. That is, how often he is inflexible, what it looks like, what he is thinking. It should include calming and redirection strategies that work for your DS, and goals for teaching him to be flexible in the classroom (written so that data can be taken on them). This usually requires 1:1 teaching that is then generalized to other settings.

HTH,
DeeDee

DeeDee,

Yes, this is the son that is in special ed public preschool. I waited till later in the evening and then emailed the teacher. I can't believe she did not call. If the bus driver / company found it bad enough to give me heads up, so should had the school. I stayed calm in my email but did let her know I did not agree with the way things were handled and offered to come get him should sometime like this happen again (I offered to come get him should there be issues right from the start back in the fall but they only called me twice due to allergy related issues). This was the biggest tantrum he has had at school since starting in November. He has been doing a great job handling himself well most of the time. Most issues arise when they have substitute teachers / drivers and the routine / rules isn't what he's used to. When we had his IEP back in the fall I asked if we could put in more details as to how these situations would be handled (I expected them to happen a lot more frequently) but I was told these would be handled once issues would actually arise.

As for the hives, I have seen him a few times break out in hives when under major stress (major to him). He spent all afternoon telling me how sad he was and how he felt this wasn't fair. I did my best talking him through it but it should had been handled at school. So yes, I feel like we have to have some sort of behavior management plan to handle these situations. Most of the time he's the model student unless someone disturbs his perfect little world. Days like today remind me that we DO have a child on the spectrum.

We have had a minimum tantrums in the last year or so (compared to daily occurrence the years before) but the last two or three weeks he has been somewhat on the edge and I just can't figure out what is causing it. No changes at home ... routines, food, arrangements or anything else and I am not aware of any changes at school either but somewhere there's a hidden trigger that I need to figure out.

But I guess today happened right in time as we are getting the new IEP together!

Might not be any of these things, but given you are thinking about environmental changes:

Changed cleaning chemicals (home or school)? Washing powder? Shampoo? body lotion? You wearing new perfume? Candles burning at home? New clothes that haven't been washed in your own powder? A pre-made food that was safe has changed it's ingredients and isn't safe anymore? Weather?

I don't have a fantastic sense of smell (my DH does) but I still get headaches, behaviour changes, etc from chemicals/smells - only I don't know why, where as my husband gets less sick but whinges bitterly about the smell and why isn't it bothering me, and then I go "Oh it IS bothering me, that's why I have a raging headache all of a sudden!". Last week when I picked my DD up from daycare I could smell their washing powder intensely everywhere inside AND outside in the yard. My eyes were burning and I had a headache by the time I left (5 mins exposure). It's on my list of possible triggers for issues DD was then having the next day... The thing that boggles my mind is that in my house I have the crappiest sense of smell, but when I asked the cook if they were doing washing she gave me a very puzzled "How the heck do you know that???" look as she said yes, apparently the incredible stench of washing powder was not bothering anyone else.

Best friend's DD (with food and chemical sensitivities) had a complete breast refusal for days as an infant before my friend realised she'd started using a new body lotion. And same child had a night of prolonged screaming until mum took her clothes off and realised as she did it that the clothes were hand-me-downs washed in someone else's powder....

Well, the teacher emailed me back and there WAS more to the story. From what she said, he had been upset and in a bad mood all morning, even complaining to the teacher and the teacher's aid that he doesn't need to come to school because he already knows all the stuff. He has NEVER done this before! We did see him dumb himself down for a bit but lately he has been rushing forward learning on his own and might be really getting bored at school?

She also said she talked to him when she put him upset on the bus but that still doesn't excuse why I never got the phone call about this and since the bus driver found it important enough to have the dispatcher call me, it probably wasn't a nice situation.

I just can't wait for the school year to be over ... 7 more weeks to go ...

I might have found the "trigger" ... I just posted about it at the same time you were writing a reply. The teacher emailed me that he started complaining about not learning anything at school and that he doesn't need to be there because he already knows everything they learn. That would definitely explain the mood he has had the last two weeks. I guess we are now entering the usual gifted mood swings on top of the ASD moods. Oh, the joys!

I would actually not tell your DS this offer is on the table, nor would I agree to let school send him home whenever he's upset. Rather, I would want to empower the teachers to know how to help DS learn to calm himself down and correct his own thinking mistakes. You don't want him to learn that if he is upset at school, he gets attention from mom and escape from the situation. You want him to learn to react reasonably and problem-solve in the situation.


There will be more and more of that kind of change in routine over time; he will have to get used to it. I would recommend doing things differently on purpose at home; not all the time, but sometimes, so that he knows that he is still okay if you drive the other route to the store, you shop the store backward instead of forward, you try a new brand of bread or a new recipe, etc. It is not easy to train a child on spectrum to be flexible, but it is probably the biggest investment you can make in their future. People who can sustain relationships and hold jobs mostly do it by flexing some; that is a skill to be cultivated.


It is okay to set a timer and say "I'll listen to complaints for three minutes (or whatever), and then complaining time will be over and we'll move on to something fun."

DeeDee

I like DeeDee's advice about setting a timer and giving him 3 minutes to talk about how it's not fair, and then move on. I also found that the concept of "fair" was something my kids latched onto when they were little, and many times they were latching onto it in situations where "fair" really wasn't the issue at all, but it's an easy concept for a child to grasp. So another thing that I found helpful was to also try to frame the situation for my kids (they aren't on the ASD spectrum, so our approach may not be appropriate or might not work in this case)... but fwiw, it helped us when my kids were getting stuck on things being "not fair" for us to talk about the concept of "fair" and where it applies and then put a frame around the situation they are upset about and talk about whether or not it really i ssomething you can view as "fair" vs "not fair" or maybe more so just "something that happened" and needs to be dealt with. I am probably not explaining it well at all! But it did help my older dd, who used to be a bit rigid in looking at things like this.

Best wishes,

polarbear

DeeDee, I should had worded it better. I meant if there were issues where he would be really upset leaving the school, I would not want them to put him on the bus like that.

I change out things / situations on him all the time and he is used to it and most times is fine. When he's not than I can usually talk him through whatever issue quite easily.

I am thinking the teacher just had one of those days when short on patience yesterday. Anyone can have these but I still believe a phone call (at the least) would had been appropriate. If the bus driver and the bus company found it bad enough, I don't believe it was as innocent as the teacher made it sound in her email back to me. The teacher's email mentioning DS4.5 coming to school in a bad mood, complaining about easy work, not being happy, then throwing a tantrum ... yet his daily report saying he came to school "happy"??? And his OT told me he was in a great mood when she saw him yesterday morning ... so it all just doesn't make sense. But he's a very happy little guy today so that's what counts .

I did have a chance to see where the Kindergarten classes will be in the fall and looks like they'll be right across from the office and from the nurse. Since K is only half day, at least for this first year I don't have to worry about food contamination during lunch in the lunch room and the nurse will be as close as it gets should there be other issues. One thing I can cross off my list!

Now I have to gently ask to see if they can offer any differentiation at all to keep him out of trouble!

I asked 3 different people at school today if there is a gifted coordinator in our district and all said no. Since there is no state funding and our school district is needing to save money so bad they are looking into closing one of our 4 elementary schools, there is no such person and the gifted programs is pretty much a joke (basic pull out starting in 3rd grade). So I'm guessing any differentiation will need to be worked out just between me and his K teacher if he/she will be at all opened to it.

Mk, I don't want to be discouraging, but it's really hard to get differentiation in half-day K. The teachers are trying really hard to bring everyone up to a baseline of competence before first grade, and teach being-in-school behaviors like listening, waiting your turn, and walking nicely in line. The being in school behaviors will be extremely useful for your DS, and totally worth doing IMO, but it is extremely rare for a kindergarten teacher to be able to differentiate instruction in academics.

We found it useful to think about those early grades as DS's alternative curriculum; everyone else was learning to read and write and do math, which he already had in spades. What he did not have was self-management, grasp of school routines, play skills, friendship skills, sitting still and attending at circle time, coping with the unexpected schedule changes, and self-calming strategies. We invested those early elementary years in his learning those behaviors, and we are glad we did. That made it much easier for the school to then see the need for academic acceleration in later elementary, and he had developed the skills to function in the school setting that made the acceleration possible.

It would be lovely if one could have it all tailored in K for the gifted/autistic-- our experience was that even if you can't, it can still be okay and worthwhile. It's not all about academics in the early grades; it's about whole child development.

DeeDee

I was just looking more into the future to see what comes in the years after K though I'd love to see him at least being somewhat challenged in K too since I'm worried he'll look for trouble ... But apparently big NOTHING is waiting for us ahead. This sort of goes along with what the special ed director told me when I asked at what point in the future could we get both sons tested (she does know they are ahead in many areas). Her answer was something like "Oh, we won't even need to get them tested. We'll just see how they will do at school." ... now it makes sense there knowing there's nobody overseeing the gifted program. I'm pretty sure the gifted program is just based on the teacher recommendation.

So all this info is mainly important to me especially since we are considering homeschooling at some point. In a way I'm glad K is just a half day. He can do academics at home and learn the structure and social interaction at school. Hopefully it won't be too bad.

Just a quick update. Our IEP meeting is tomorrow and yesterday I emailed the special ed director regarding the allergy and other accommodations we would like to get covered in the IEP and her response was that the allergies would not be covered in the IEP and that he would have an Emergency Health plan (the same thing he has now).

The emails said
"The allergies would not be addressed in his IEP, but through his emergency medical plan. Accommodations could be placed in his IEP if the allergies were to interfere with his learning and access to his environment..."

Being the parent, I see his allergies affecting his learning and environment on a daily basis. How is it not enough to have something in writing that would help us prevent incidents from happening??? The emergency medical plan is for TREATING allergic reactions not really for preventing them.

She said if I need more clarification we can touch up on it again tomorrow at the meeting. So I emailed back saying we need more than just a health plan to keep him safe ... IEP or 504 if we cannot get it in the IEP but I tried to explain why I believe his allergies ARE interfering. Seriously, how cold they NOT???

... I'm so frustrated with the school district and he hasn't even really started school yet!

another quick update. I was just over at the school where DS4.5 should be attending next year and asked the office administrator and nurse about what he'd really need (they were sitting in the front office so was perfect timing!) and the administrator (or whatever her full function / name is) said that because he has an IEP he cannot have 504 (which I sort of figured out on my own) and that his health plan would be included in his IEP ... that there is a spot in the IEP where it would be put in. Is this how yours (who have IEP with allergies included) was done or was it actually written in the IEP among the accommodations that are needed? I feel like they are just trying to blow me off (whether unintentionally or not I'm not sure). I don't want just a treatment plan included ... I want actually specific accommodations to prevent the risks. Or am I misunderstanding this whole thing?

My understanding is that should ALL be rolled into the IEP.

Agreed. There should not be a case in which a child with an active IEP has got separate 504 plans or IHP/IHCP's, since all of those things are part and parcel of the child's care/educational environment.

If the IEP is faded, then those things that remain are rolled into a 504 plan.

An IHCP isn't about access. It's about safety and a treatment plan. Not management and certainly not about planning inclusive education.

Mk13, my ds who had an IEP did not have an IHP (what our schools call the health plan) and my dd who has the life-threatening food allergies did not have an IEP or a 504, she just had an IHP. There was a place in my ds' IEP form that an IHP would be inserted into if there was one. If that's what will happen with yours, I think that is a-ok.

I was concerned about having the IHP instead of the 504 for my dd, and had some other concerns as well re what we could and couldn't request that the school do to keep her safe. Our school was contentious, so I called FAAN (Food Allergy and Anaphylaxis Network) (I haven't checked in on them in a long time, and I can't remember if they are still FAAN or have they morphed into a different group?)... anyway I talked to the FAAN lawyer (who will answer questions for parents) and his advice was that using an IHP in place of a 504 is a *very* common practice in the US for students with food allergies and that it was generally not an issue. The 504 is intended to be used when the necessary accommodations to allow FAPE aren't provided routinely by the school... but when a school is using an IHP process as the route to provide accommodations for kids with food allergies, that's considered to be legally acceptable under the ADAA (I might not be stating this technically-legally-correctly, so please don't take my word for *anything*) - but - it might be useful to call FAAN yourself or send an email and ask what would by typical and appropriate in your situation.

Best wishes,

polarbear

ps - we did have specific accommodations as well as treatment instructions etc written into our dd's IHP.

Thank you everyone! It will be an interesting meeting tomorrow. The current health plan we have provides treatment information (when to use what kind of thing) but nothing about prevention and accommodation. He would once again be in an egg-free classroom but we already know from experience that is not enough. We'll have twice as many kids the teacher will need to monitor in terms of what snacks they bring, washing their hands, etc. Knowing the school's relaxed approach to all this, I want to have the accommodations in writing.

I'm really getting to a point of thinking WHY in the world am I trying so hard to get him into safe K program for just 3 hours a day when it's not even mandatory in our state to go to K. Maybe I should just look into outside socializing options (library, children's museum, gym, etc.) and homeschooling / unschooling and just forget about public school at least for now. Especially since he may be switching schools starting in 1st if our building gets closed and we may be going through all this AGAIN. So if things don't go too well tomorrow, I'll probably just tell them "forget K" ... just give us school speech therapy (so we can keep the IEP alive) and we'll talk again next year.

The meeting is behind us. Thank you all again for the great help and suggestions! We made it through without any emotions getting out of hands and everyone walked out of the meeting fairly happy. I loosened up regarding having the allergies in the IEP but we are getting a lot more detailed Health Plan and will get pretty much all the accommodations I was asking for as long as we have it officially requested by DS's pediatrician or allergist, including either a special ed busing to and from school (due to the cold allergy) or regular busing but the bus would stop in front of our house and wait for us to come out of the house rather than us waiting at the bus stop in the middle of the winter in the cold. Plus getting an assigned seat that would be cleaned properly to avoid exposure to egg residue possibly left over from other kids. So, all in all we did good

Couple things I didn't like ... the school nurse was there too (fine with me) but she kept prodding at me in regards to what reactions DS had in the past and always ended up with "so, you didn't actually have to use the epi-pen" ... when she asked the same thing for the 3rd time it was starting to get to me. The fact we have never actually had to use it is NOT because his allergy wouldn't be severe. It's because we are doing a great job AVOIDING any chance for life threatening reactions! Very strange coming from a NURSE! Does a kid actually have to go into shock for them to understand the dangers?

And a little bit of disconnect I saw in how different people perceive DS ... while one of the therapists and even his teachers are concerned with how much he gets sick that the "academics" standards may be hard to keep up with with in Kindergarten the special ed director said something along the lines of "he'll be one of those kids that will make us look GREAT on standardized testing" ... I'm thinking the second one is more likely. He's already way passed the K standards in most area except for writing and some reading! Being home sick a lot is probably what will keep him from being bored and acting out too much! lol

And just as we thought we had it all figured out, we hit another road block. A week ago DS4.9 was tested for more allergies on top of the ones we already knew about. This time we included environmental and seasonal and what do you know, he tested positive to every single thing they did (trees, grass, dust mites, mold, cats, dogs, etc.) And all of theme big time allergies, some at 4PPP on a 0-4 scale. So we started daily allergy meds to make DS's life more comfortable and then he started to show signs of allergy and exercise induced asthma and THEN to top it off, on Saturday he had two episodes where he basically stopped breathing without any warnings (asthma attacks most likely) so now we have an inhaler from the emergency room until we see the allergist again on Wednesday and he will decide what to do next. It seems the air outside was so saturated with the tree pollen he's so highly allergic that he just went into something very similar to anaphylactic shock. At least we know it's related to his seasonal allergies so shouldn't be an issue all year but it was very scary so now we are to square one in terms of his school health plan. Can't even put him on the school bus the next two weeks since they have no a/c and drive with the windows down plus the bus driver wouldn't be allowed to use his inhaler if needed anyways. And the teacher wouldn't use the inhaler either. She said they would take him to the nurse's office, which in his case might be too late since he went from being 100% fine to not breathing within seconds.

So, back to thinking about homeschooling. Especially since it just dawned on me that even though the boys are 19 months apart, they could be on the same curriculum since the younger one is more advanced (though not cooperating! lol)