The MR label

[jlo]

To all that read this;
My son Colby turned 6 at the end of November. He is in his first year of Kindergarten. As mostof you know his developmental delay label is now beng changed to MR His Preschool teacher told me this was coming and tried to covince me to contact the State of RI Dept of ED to fight for a change. Well being a mother of 2 and a full time employee, this was just to much for me to bite off.
I'm not in denial that my son has mental retardation to some degree But I just feel that being labeled with Down Syndrome would define my son better. His teacher already tried to put this in and it was kicked back. So is this just a RI thing or every state has this same criteria.

[momofrussell]

In the school system they need an "educational diagnosis".. so DOWN SYNDROME is a medical diagnosis not a school diagnosis. I know... may not make sense to some but that's the way it is. So, they use MR for the school DX. Some states/districts don't use MR but they will use terms like "trainable handicapped" or something to that effect. They are just broad terms to qualify a child for services. They are not intended to "define" our children I know it hurts still the same but that's really not what they are for.

And that's the short of it.. it's JUST to qualify your child for services and not to truly "label" him. Your IEP should still have listed his medical DX of Down Syndrome and any other medical DX's. Russell's IEP lists "MR" and "VISUALLY IMPAIRED" for his school dx's and his IEP also states that Russell has DS, Autism and is Visually Impaired.

The one DX I do know if that is a medical and/or school DX is Autism. Again, don't know why it's different for this but it's the way it is. BUT... you don't have to have an "autism" dx with the school to get services for a child who has a medical DX of Autism. (did I confuse you now? LOL)

Did your teacher ask you to contact the RI dept of Ed to fight for a change JUST for your son or to fight to get the MR off the IEP for all kids?

A.

[jlo]

Thanks for responding the teacher that wanted me to go to the State told me years ago all children with verying disabilities were put into the MR category.
She did tell me kids on the Autistic Spectum had they're own label so why not Down Syndrome.

What you did say makes sense and i should just get over it.
Thanks again for your input.
Jenn

[Jessie]

Jenn,

I feel your pain. I still remember the first IEP meeting I went to with Jason's dad and I was so upset that they labeled Jason as "Moderately Cognitively Impaired". The politically correct version of moderatly mentally retarded. It is very hard to hear those words. For better or for worse I've come to accept the fact that they have him "labeled" exactly as he is. Labels in general just suck!

Jessie

[ALLISA]

When Erin recieved her dual dx of Autism last year....the team that evaluated her at CHidlren's recommended that her "primairy diagnosis" as needed for an IEP be listed as "severe MR as a result of DS and PDD NOS"....when her IEP rolled around...they wanted to list her as ds.....and I actually fought to keep the "label" she recieved from the evalutors.....

So we are actually coming from opposite camps

I think that for the case of an IEP.....I'd prefer to have a label that will open the most doors and services to my child....pretty self-serving I admit....but that is the point of an IEP, no ?

[momofrussell]

Yes... Allisa... the IEP is based on DEFICITS our children have. And based on Russell's needs and "deficits" we get ALOT for him

A.

[Kristin]

We just had Clarice's IEP at the end of December. This was the year of the 3-year testing. They reclassified her as MR from "Other". Her IQ finally fell into the MR range. They went into a long explanation about the designation, which I already knew was coming. As Clarice ages, she will not be able to keep up with the "norm" and the gap will widen, and the IQ will probably go down. I look at the designation as a way to get the proper services for her. She is labeled as MR and severe communication delay. This provides us with the appropriate services without arguments.

As each of us knows, our kids vary widely in their abilities and needs. A designation of Down Syndrome would not tell the educators what the child needed. MR, as much as most of us do not like the designation, identifies the delay and allows for a more accurate (we hope) indication of the child's needs.

I thanked the psychologist for her explanation of the change to MR, and moved the IEP forward. If my high school students want a clear and concise lecture about definitions all they have to do is call one another a "retard". It is a hot button for me, and a chance to clarify what the term actually means.

[cindylou]

Kaylee is 13. Her label is speech and language disorder and developemental delay. They have humored me thus far. It will change this next IEP, but I think I will pay the $500 or whatever to a private psychologist to do the testing so that the school district will not have a IQ# in their file. I can then provide a report from the private psych saying she tested in the MR range.

I know teachers look at the # and teach according to that and I can't stand thinking they won't try because of a #.

I know also that there are good teachers out there that attempt to teach all--but there are quite a few who would use the # as an excuse for not having to try to teach her their material..

just my opinion-
cindy

[momofrussell]

Why don't you just say no to the IQ testing within the district Cindy? You can deny any/all testing if you want. Technically you can... it's an IDEA thing.

A.

[cindylou]

A-
Yes, I know that I can refuse. Have been for 8 years now.

I think they think I'm in denial. They put their tight little condescending smiles on and say "don't you think it's time we have her classified with a more appropriate label?"

Then I reply that I really don't want an IQ # to define Kaylee. That I know that each teacher gets her file and opens it up every year and looks for a number. I know teachers--some of my best friends are teachers.. doesn't that sound annoying?? But I feel like it would hinder them getting to know Kaylee and just giving her the material and seeing what she does with it.

She can't wouldn't be the first thing they said. They might say "I don't know what she's able to learn.." oh, neither do I so I just say give it all to her. Modify, adapt- of course.

Well, now they're saying "unless she test MR at least 3 X before her 18th birthday she won't qualify for state programs as an adult? I don't know where they get this info--but that's the last bomb they tried to drop on me.

'Course, if anyone knows me they know that I can't stand having the lack of gov't assistance held over my head. I have a family-we take care of our own.

I understand that their are programs that might be nice for Kaylee as an adult--don't get me wrong--but to think that our gov't is somehow responsible for my child is just contrary to me and my belief system..

so--their 'threat' didn't really make me feel threatened.

I am tired of the discussion with them-so I will probably proceed with testing this summer privately. (Though I totally hate to give in to their pressure..)

Is there any benefit to an IQ# from anyones perpective?
A- you said that Russel gets more services based on his #? I'm just afraid that they would use the # as a reason to say Kaylee can't go to her neighborhood school and be included at any level.

always torn about all this-
cindy

[momofrussell]

Your post makes so much sense for you and Kaylee and I love to read your "fire" in you about your inclusion and your daughter! I am SO at the other end of the spectrum but that's ok.. we need good advocates at both ends right?


I didn't say his IQ # is why Russell gets more services.. I said:

"And based on Russell's needs and "deficits" we get ALOT for him."

We were just having this discussion on another board too because a mom asked about IQ testing for her daughter. I know they did their battery of tests for Russell when he was 6 here in MO but to be honest, if an IQ test was done and they told me a number? I have NO CLUE what it is.. I can't remember. LOL That was back when he was in Early Childhood. Since then we've had a few other teachers and placements along the way and a couple of times they have asked if he has had one and/or the number.. and I have no clue! LOL I am sure if he did have one, it's in his master file somewhere...I'll let them find it! Since we had a music therapy eval last year, we actually aren't scheduled for any evals or testing for 3 yrs after that.. but we are in a new district and we all figure he'll probably need some evals before that time. I am ok with that..not much will change... and if anything changes it will be the school DX of Autism he DIDN'T get when he was 6... they might decide now he has Autism LOL But, even without the Autism DX through the district... Russell STILL gets what he needs... which is how it's suppose to be.

I actually have no issues with Russell and any of the tests they do... I know where Russell is and what he needs... and IEP team and the tests concur.

But that being said.. you bring up a great point about you not wanting Kaylee getting that score and having it used in adverse ways. As much as legally they are NOT suppose to use testing and scores to drive an IEP and placement they do. Sadly, they use those scores to pigeon hole tons of kids like Kaylee that deserve what is rightfully theirs!

A.

[jlo]

Hi
I'm so glad I posted my dilema. I loved reading what you all wrote. I have to say, like I said before, I'm not in denial and if the label keeps him getting the services he needs and deserves then so be it.
Another question I have for you all is Colby's Special educator is only in her second year of teaching her own class and Colby is her first student with Down Syndrome, so besides this wonderful website and all the books i have are there any other links I should give her? She wrote in Cobys log today she would like to learn more about DS. She already does amazing with him and colby andI like her alot. I like that she has such an interest with him.
Jenn

[momofrussell]

Woodbine makes alot of good books... maybe share a link of those books?

www.woodbinehouse.com/

A.

[trishasmom]

And that's the short of it.. it's JUST to qualify your child for services and not to truly "label" him. Your IEP should still have listed his medical DX of Down Syndrome and any other medical DX's. Russell's IEP lists "MR" and "VISUALLY IMPAIRED" for his school dx's and his IEP also states that Russell has DS, Autism and is Visually Impaired.

I pulled out our most current IEP and it doesn't even have DS or MR listed, It lists, Speech Language Impairment, Hearing Impairment, Autism Vision Impariment. It mentions nothing about her DS or being MR. Now on the other it mentioned the above but included DS but not MR. But as I told them the DS is not what they have to treat it's all the other things going on that we need to work with.

[dannysmom]

I live in RI as well. My cousin is a guidance counselor in the elementary school system in my city. She did tell me that they use the phrase MR to identify children. With Daniel being only 19 months....it is still a ways off, but not too far. I realized last month that we were 1/2 way through EI....and that means 18 months away from the school department. My EI educators all know that I am NOT to be told "Daniel functions at "x" level". If they need those numbers to justify his services, then so be it....but to me, Daniel functions at Daniels level. It's been hard for me to accept, in the beginning....his delays were not so readily seen.....but I can see it now. I don't know what I will do when IQ testing comes around. My gut tells me I won''t let them test him for fear of treating him differently if he scores low. I know I'll be searching for support in the coming months.