Re: Leah's big IEP coming up

[Guest guest]

All her

therapists, the special ed school supervisor, a regular kindergarden

teacher, our case worker, her special ed preschool teachers. Big group

of people and then there's and Me. So the big question is what

should and I be aware of to prepare ourselves for this meeting.

,

One of the "biggies" for us was Door to Door transportation (bussing), with an aid that knows how to correctly do the tie-downs. Here in Tennessee the hot weather is horrid so air conditioning in the classroom was also a special request.

The boys' were in public schools for a few years and for the most part the school staff were absolutely wonderfull but as the progession of their disease continued no matter how much the teachers/staff bent over backwards trying to make it work it just couldn't. The fatique issues and vision issues were just compounded. Had we stayed in the public school district it would of just been free daycare. Though now they are currently enrolled in the School for the Blind. HUGE HUGE difference all around. The quality of excellence coupled with the teacher-student ratio is so wonderful. It may be due to the boys instead of being the only ones "challenged" they are now just one in a crowd ....giggles having the blue handicapped tag for our van is not helpfull since most of the folks there have 'em too.

Zach (moderate MR) and Cory (moderate to severe MR) have gained educational levels (yeah!! they are currently reading on a 3rd grade level!!!!) because the teachers aren't overwhelmed by their disabilities since they've taught special needs kids from day one. The old adage of trying to fit a square peg in a round hole just doesn't come into play. Oh it's not all a bed of roses ...well maybe it is ...just we sometimes find a thorn or two such as the PE teachers expect the boys to "do stuff" ... and of course the boys want to please them so they end up stressing their bodies out and having a crash on friday thru the weekend and recup just in time for Monday again. About every 3 weeks Zach's out for 2-3 days from being sickly.

We've tried to explain the fatique to them but they don't see it ... they see the boys laughing and happily trying to complete the activity ...the PE staff doesn't see them the rest of the day or at night with the muscle spasms. We could have a doctor's note but then the boys would complain because they'd feel left out. Catch 22.

I'm starting to get off-topic sorry about that! I guess as far as your up coming IEP meeting ... just keep in mind that you are able to call another M-team meeting at anytime as often as you like if things aren't working out or if you find that something else might work better. The IEP is the "written in stone" thingy ... yet modifications can be made when needed.

Oh, I just thought of something .... depending on Leah's speech abilities you might want to consider having a "daily log" ... so that the teacher/aide can write a few sentences about each day .... for example "Today we painted rocks in art, the music teacher brought in drums, Cory had 1 bm after lunch" or "Cory was very sleepy today, didn't eat well but temperture was normal." That way we would have a clue what was going on during school time and be able to have a conversation with Cory since we aren't able to ask open ended questions such as "What did you do at school today?"

Good luck and best wishes!!!

Romona

mom to Tori (age 15, initation for Worthy Advisor <Rainbow> next week!! WaaHoo), Zach (age 14, multichallenged eyes to toes, I can see HBO Comedy Specials in his future, he's such a joker!!!), Cory (age 11, multichallenged eyes to toes, stubborn yet a great hugger!) and wife to Tony (my hero!!!)

[Guest guest]

All her

therapists, the special ed school supervisor, a regular kindergarden

teacher, our case worker, her special ed preschool teachers. Big group

of people and then there's and Me. So the big question is what

should and I be aware of to prepare ourselves for this meeting.

,

One of the "biggies" for us was Door to Door transportation (bussing), with an aid that knows how to correctly do the tie-downs. Here in Tennessee the hot weather is horrid so air conditioning in the classroom was also a special request.

The boys' were in public schools for a few years and for the most part the school staff were absolutely wonderfull but as the progession of their disease continued no matter how much the teachers/staff bent over backwards trying to make it work it just couldn't. The fatique issues and vision issues were just compounded. Had we stayed in the public school district it would of just been free daycare. Though now they are currently enrolled in the School for the Blind. HUGE HUGE difference all around. The quality of excellence coupled with the teacher-student ratio is so wonderful. It may be due to the boys instead of being the only ones "challenged" they are now just one in a crowd ....giggles having the blue handicapped tag for our van is not helpfull since most of the folks there have 'em too.

Zach (moderate MR) and Cory (moderate to severe MR) have gained educational levels (yeah!! they are currently reading on a 3rd grade level!!!!) because the teachers aren't overwhelmed by their disabilities since they've taught special needs kids from day one. The old adage of trying to fit a square peg in a round hole just doesn't come into play. Oh it's not all a bed of roses ...well maybe it is ...just we sometimes find a thorn or two such as the PE teachers expect the boys to "do stuff" ... and of course the boys want to please them so they end up stressing their bodies out and having a crash on friday thru the weekend and recup just in time for Monday again. About every 3 weeks Zach's out for 2-3 days from being sickly.

We've tried to explain the fatique to them but they don't see it ... they see the boys laughing and happily trying to complete the activity ...the PE staff doesn't see them the rest of the day or at night with the muscle spasms. We could have a doctor's note but then the boys would complain because they'd feel left out. Catch 22.

I'm starting to get off-topic sorry about that! I guess as far as your up coming IEP meeting ... just keep in mind that you are able to call another M-team meeting at anytime as often as you like if things aren't working out or if you find that something else might work better. The IEP is the "written in stone" thingy ... yet modifications can be made when needed.

Oh, I just thought of something .... depending on Leah's speech abilities you might want to consider having a "daily log" ... so that the teacher/aide can write a few sentences about each day .... for example "Today we painted rocks in art, the music teacher brought in drums, Cory had 1 bm after lunch" or "Cory was very sleepy today, didn't eat well but temperture was normal." That way we would have a clue what was going on during school time and be able to have a conversation with Cory since we aren't able to ask open ended questions such as "What did you do at school today?"

Good luck and best wishes!!!

Romona

mom to Tori (age 15, initation for Worthy Advisor <Rainbow> next week!! WaaHoo), Zach (age 14, multichallenged eyes to toes, I can see HBO Comedy Specials in his future, he's such a joker!!!), Cory (age 11, multichallenged eyes to toes, stubborn yet a great hugger!) and wife to Tony (my hero!!!)

[Guest guest]

Hi ,

IEP meetings were a huge stress. You are right about the i's and t's. We made sure all of ours were dotted and crossed but there were no guarantees, even with being federal mandated, that they were followed. The stress level is so much better and J.D. has more energy since he is 100% homebound.

I do know that words like "as needed" and "when needed" can be totally misinterpreted. Also words like daily could mean once the required was done, the IEP was met although it might not meet the medical need. Also sit teacher could be that the child sat by the teacher one minute and the IEP was fulfilled.

J.D.'s dr sent a resident to his IEP meeting. Ask your dr for someone to attend. Also, your district is suppose to let you know organizations to be there with you at no cost to you. This is an emotional time and it does help to have someone. Also, take a tape recorder. Let them know in advance so they can also have one ready.

Good luck.

Darlene

[Guest guest]

Hi ,

IEP meetings were a huge stress. You are right about the i's and t's. We made sure all of ours were dotted and crossed but there were no guarantees, even with being federal mandated, that they were followed. The stress level is so much better and J.D. has more energy since he is 100% homebound.

I do know that words like "as needed" and "when needed" can be totally misinterpreted. Also words like daily could mean once the required was done, the IEP was met although it might not meet the medical need. Also sit teacher could be that the child sat by the teacher one minute and the IEP was fulfilled.

J.D.'s dr sent a resident to his IEP meeting. Ask your dr for someone to attend. Also, your district is suppose to let you know organizations to be there with you at no cost to you. This is an emotional time and it does help to have someone. Also, take a tape recorder. Let them know in advance so they can also have one ready.

Good luck.

Darlene

[Guest guest]

and ,

We just completed Wyatt's evaluation for Kindergarten in November.

Like you we met with many specialists prior to the meeting and then

again at the meeting. One thing that the group had said that seemed

to have really helped them and us set an IEP that would work for all

of us was that we were very consistent in our expectations of what

Wyatt could do and what the school could offer. and I spent a

long time discussing what it was that we want for Wyatt and for our

family. We realize Wyatt is not going to be a rocket scientist,

heck he is not even going to be able to do basic math so we decided

we did not want to focus on anything that you would traditionally

learn in a school setting. We looked at what we value as a family-

enjoying the outdoors is a big one for us. So one of the goals is

that Wyatt learn how to use a motorized wheelchair so that he can

have a sense of independence and can explore outside on his own a

little. Our 2nd goal was that he be able to distinguish between a

yes switch and a no switch so that if we ask him a question he can

respond yes or no. Our third and last goal was that Wyatt not be

mainstreamed, but that he is in a class of mixed ability disabled

kids. Wyatt is very social and he would become easily bored if no

one was running around him. Everyone on the team agreed with our

goals. They were clear, realistic, appropriate for Wyatt's ability,

and something that is attainable. Everyone we met with and every

form we filled out we said the same thing. I personally believe

that that is the key to having a good working IEP- realistic, clear,

attainable and just a few goals. I am also a high school teacher

and one thing that really stresses me is when I receive someones IEP

and they have 20 things listed and I am suppose to be responsible

for 10-15 of them and the student is responsible for 5, i.e. I have

to give them extended time instead of the student coming to me and

saying I need extended time. I know from a parents viewpoint it

seems like no big deal but from a teachers it is. In a mainstream

class there could be 25-35 students. It is tough to keep track of

all of the kids, especially high school I have 175 kids each

trimester.

This is getting long and I don't know if it is helping, but one last

thing. Coming again from a teacher/schools viewpoint they are also

going to be thinking about liability issues. I would love for

someone to take Wyatt up and down the slide however Wyatt is 30+

pounds. You really need a staff member that knows proper lifting

techniques, that is in good shape, and most likely young. The

district is not going to want to have to put someone on disability

pay because of an injury from doing extra lifting and carrying. It

is too expensive for the district to do. I hope this helps some.

Good luck.

Geri-Anne and Wyatt, complex I

> Hi all:

>

> I know we've addressed this in the past; but....Leah is having her

three

> year IEP coming up on Thursday morning, January 15th. All her

> therapists, the special ed school supervisor, a regular

kindergarden

> teacher, our case worker, her special ed preschool teachers. Big

group

> of people and then there's and Me. So the big question is

what

> should and I be aware of to prepare ourselves for this

meeting.

> She is being placed in kindergarden next school year so I want all

the

> i's dotted and t's crossed. So to say. I will be addressing the

issue

> of playground, heat issues with that. But I want an aide to be

able to

> carry her out of her kidkart and slide down a slide with her. We

just

> got done building an accessible playground here in Appleton

because none

> of the schools have equipment for kids with disabilities (well

except

> the oversized chair with no straps) and Leah loves to play and I

don't

> expect her play is to just be pushed in her kidkart especially

when she

> sees the slide and will point to go and play. Anyway you pros out

there

> guide me in the right direction. Trying to get all my thoughts,

> questions together so we can present Leah's issues well and about

mito

> and our concerns. Leah has made many neat gains this year which is

> great; but I don't want them to forget what mito is and how it

affects

> her and what may happen down the road; right now she is not

regressing

> and her disease has not progressed (which we are extremely happy

about)

> but I know an illness can change that. We do have a person here

in town

> that can come and be an advocate for us as a parent and charges

whatever

> we can give afford to give her or donate to a charity in her name.

> Would it be wise to see if she can make it to the meeting to have

her

> come along? Well enough said. Will wait and see what you all

come up

> with for questions for us to think about and advice. I, or I

should say

> we thank you in advance for all your wise words.

>

> Nerenhausen

> mom to Leah