Help! 1st time IEP!

[Riley'sMom]

hi everyone,
riley, 2 1/2, will be starting preschool in 2 weeks. she also has Down Syndrome so she will be in a special ed class at the elem school. because of this she will have an IEP, which will also include her diabetes care. we are meeting this week to work on it. i was hoping to have done a lot more "homework" this summer, but the pump/cgm start and stomach virus/hospitilization kind of kept us busy...
any suggestions on where we should start as far as her rights, what would be appropriate for us to demand, and what wouldn't, teaching the staff, guidelines appropriate for someone this young, etc? i know they do have a nurse there all the time, and she has had students with T1 in the past. riley will probably be there 2 or 3 mornings a week, 8-11, which will include morning snack but not lunch. she has only ever been with us or my mom, so this is all new to us!
thanks!
jessica

[Riley'sMom]

i should add, there are 10 kids in the class with 1 teacher and a few aides. number of aides is determined by the needs of the class. last year there were 10 kids/1 teacher/2 aides.

[selketine]

Maybe you already got the IEP thing in hand for the DS but I found the Nolo guides really helpful. http://www.nolo.com/product.cfm/ObjectID/53269B09-7112-4E95-A90F8979BEA1F73A/118/

As for the type 1, I'd look at some of the 504 plans here at the CWD website for things to include in the IEP. The Ame. Diabetes Assoc. also has a great packet they'll send for free if you call 1-800-DIABETES. In the meantime you can find a lot of stuff including a sample generic sort of 504 on their website: http://www.diabetes.org/advocacy-and-legalresources/discrimination/school.jsp

[pfgordon1994]

hi everyone,
riley, 2 1/2, will be starting preschool in 2 weeks. she also has Down Syndrome so she will be in a special ed class at the elem school.
What needs does your child have other than the diabetes care? Does she toliet on her own? Does she recognize when she is low? It is possible that a 1:1 assistant would be necessary to meet you child's needs. I recently taught summer school where there were 12 students, 2 classroom assistants and 2 one on one aides.
Patty

[Riley'sMom]

thanks for the great info!
as far as her needs, she is completely dependent on us. still in diapers, doesn't know highs/lows, only saying a few words right now. i was wondering about the 1:1 myself. thanks!

[Kaylee's Mommy]

I would request 1:1 aid for her as well.. especially since she is so young and can't do anything herself..

make sure she also has and ICP as well (individualized care plan) everyone that has her will have a copy of this, bus drive, gym teachers (not that she'd be doing gym at this age but you know what I mean:) ) and it tells them what to do when numbers are high or low.. how many units to give etc, and what to do when low.... it will also have her picture with it so anyone can identify her quickly..

[momofphoenix]

Ohhhh preschool I remember tho's days :D
Phoenix had just been dx'ed before starting preschool, I didn't know what I know now for his IEP's (he has an IEP and a IHP)
Advocate for her, I truly feel you cant ask for to much when it comes to your child. A one on one would benefit her tremendously, expecially till everyone gets to know her signs of lows and highs.

We have everything on Phoenix's IEP down to being able to use the restroom when ever he needs. I had to have it put in writing that if he says he needs to go to the restroom that he is able to get up and go right then and there, (his preschool teacher would tell him NO and then an accident would happen)
Look into a 504 too, you can have both a 504 and IEP double protect her while she is in school.
Let us know how the meeting go's

[allisa]

Hey Jessica !

I would say that she should absolutely qualify for a consistent 1:1...same person ( NO switching of aides on different days ). For a non-verbal child who can't distinguish lows....it is a MUST to have someone with her who can learn her symptoms and signs and can predict when she may be low.

The schedule she is on now....sounds like a perfect intro....not too long, no major meals....I think if I were in your shoes I would request monthly meetings to touch base with teacher & 1:1 to clarify any educational issues or diabetes care stuff that comes up. I'm sure they'll say "open door, come in whenever you like" and that is great....BUT....still put it in writting so that you have that monthly option of tweaking ANYTHING, extending school hours, independence, etc. Your daughter has multiple needs, and she WILL need some extra time and effort....

My biggest advice to moms going thru IEP for first time is push, push, push for as much ST as possible(at least 90 minutes per week to start).....this will be so important for her not only with EVERY day life tasks, but to be able to tell you when she is low would ( I'm sure be WONDERFUL)....ST should be able to help with that....a PECS program should help train her to understand her lows. Every time she tests and is low she should be given a Picture to represent low ( wether it is an arrow, or even the word in capital letters, or a pic of a glucose tab) something so that she will come to understand that when she FEELS this way.....this picture lets others know....also....I am a huge beleiver in Total Communication.....so all 3 should be re-enforced....PECS, sign for low and the verbal word low.....I've never had to teach a special needs child how to communicate a low, but I imagine it would be like potty training ( and YES it was HARD and LONG, but necessary & worth it !!).

When potty training, we used PECS, sign and word to get her to understand the feeling and know what to do when she felt it....you'd have to do the same with lows and I'd say A GOOD speech therapist should be able to assist with that.

Does your endo have any thoughts on how school should be helping ? Do you visit and Down syndrome clinics at Children's Hospitals near you ?

Does preschool starts early for her ? Erin stayed with EI until exactly 3 and then right into preschool. How are you feeling about this next step towards independence ? Are you nervous, looking forward to it ? Do you like her school and are you satisfied where she is ?

We have talked before, but I have to say again....I have such a huge amount of admiration for you and the task you have caring for a child who has Diabetes on top of another disabilty.

I can't wait to hear how her first day is....good luck with IEP ....I have one this week, too .....because I rejected her last one.....oh yeah.,...I'm sure you know.....BUT .....NEVER EVER sign IEP at meeting....take it home, read it over, digest think and then sign....you can always sign and reject a portion that you want changed.....and if it's not too late ( not sure when your meeting is) call SPED and ask for the IEP ahead of time. My dept. always has it neatly typed and written in advance ( which is BAD....the correct way to do an IEP is have it blank & ALL fill in together)....but most do it the other way....so I'd inquire how your town does it. It is MUCH NICER to read it quietly at home and have time to think and digest than reading it in a room with everyone waiting on you to finish.

sheesh....reading over my post I sound very confrontational when it comes to these meetings...and I'm really not :).....LOL....but it can be overwhelming when you first start and you put so much faith & trust into teachers and district when the truth is....give yourself JUST as much faith and know that you can make very informed decisions.

Good luck....and post up...I want to know how it went !!

[haileysmom]

i would say that you def should ask for a one on one aide. i am a special education teacher in a self-contained classroom and i have children with downs. i think it would be really good for ya'll to have a one-on-one- that stays the same every day - that way maybe the aide will be able to look for signs of her highs and lows. also, maybe the aide can be taught to check blood sugar, so they don't have to spend so much time out of the classroom going back and forth to the nurse (this is something i am REALLY going to fight for when my daughter starts kindergarten...right now she is in pre-school and all checks and shots happen in the classroom) good luck with everything. also, make sure you ask for everything you think you will need at the first iep meeting. and make sure everything you want is actually written in the iep- BEFORE you sign it....to make sure it gets in there and gets carried out!

[Tamara Gamble]

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Tami