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Thread: "mental retardation" vs. developmental delays?

  1. #1
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    Default "mental retardation" vs. developmental delays?

    Hello friends,

    I'm wondering if you could help me sort out a terminology question. What does the term "mental retardation" mean when you read it in a medical journal article? How does it relate to the term "developmental delay" -- is "delay" just a more PC way to say the same thing, or is there a substantive difference?

    The reason for the question has to do with my 2-1/2 year old DD Miriam. Her neurologist has told us he thinks she fits the profile of Linear Nevus Sebaceous Syndrome. This rare syndrome has a classic triad of symptoms:
    - Nevus on the face or scalp (it's a "blotch" of abnormal tissue. Miriam had 3 plastic surgeries to remove the nevus on her scalp that she was born with)
    - Seizures (Miriam was diagnosed with epilepsy in September 05)
    - Mental retardation (Miriam has cognitive & speech delays)

    The mental retardation bit has kind of thrown us for a loop. The term just sounds so dang permanent. We're kind of struggling right now with how we should be thinking about this.

    We'll be talking with the neurologist again soon, because we've got other decisions to make. He recently bumped up Miriam's dosage of anti-seizure meds, because she's of course growing but we were also starting to see little "startles" that he thought might be seizure fragments. However, this week that she's been on the higher dosage, we're starting to suspect that she's experiencing a rare side effect of the Depakene, namely overactivity. She's been bouncing off the walls, and also throwing incredible scary temper tantrums in which she slams her head onto the floor. We wondered back when she first went on the Depakene whether it wasn't making her somewhat manic, but the neurologist said you wouldn't expect it, and so we have been operating on the assumption that that's just part of her developmental issues. But now we're wondering, is it possible that we've spend the last 9 months working with an OT on issues that are really mostly (or entirely) medication side effects?? Ye gads. Anyway, there's probably a medication change in Miriam's future, along with whatever side effects that new medicine may bring.

    Until we get the chance to meet with the neuro again, I'd love to hear any words of wisdom on my terminology question!!

    Thanks in advance,
    Joanne
    & Miriam, 5/27/04
    Epilepsy, speech & cognitive delays, sensory issues, Linear Nevus Sebaceous Syndrome?

  2. #2
    Suzi is offline INCIIDer - A Community Creator
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    Default I think at a young age they may apply the word

    delay because they can't really say what is going to happen as the child grows? I'm just guessing at this. I know going through testing my dd for learning differences that alot of testing cannot be done until they are older...like 6 or 7 years old. I know that mental retardation is typically defined as someone who has an IQ of 70 or less. I don't think they can administer an IQ test until much older than your dd.

    Have you done any research on your dd's cognitive delay and what that means or has your dr gone over it with you? Regardless, your sweet dd is the same person with or without the labels. It is also so important to get the best early interventions you can. From my experience, I've learned that is the most important thing. to you and hope you get some better anwers than mine! I'd be sure to have a list of questions to ask your neurologist about the terminology in the report.

  3. #3
    angeleena is offline INCIIDer - A Community Creator
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    Default we have wondered the same thing, our dd

    has "delays" and we wondered if that means mental retardation or what?

    Sometimes I feel like the teachers and other kids at her preschool treat her like she is mentally retarded. The main teacher knows our dd and knows how much she is capable of, as dd is cognitively ok. But, it is a teaching preschool, so lots of student teachers go through and sometimes they say things like "She had a great day, she said "No Thanks" when i offered her crackers..." or something totally simple for her like it is a big deal.

    I think they think she is mentally retarded. argh.

    I tried to tell some of them that she tests cognitively normal, but speech/self care behind, but they still do not get it.

    -angi
    ella 3 yrs

  4. #4
    Restless is offline INCIIDer - A Community Creator
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    Default Barge for Angeelena (m)

    I haven't been on this board much, as my DS tested out of Special Ed for Apraxia, and is in a regular kindergarten. I stop by here and there, and jump in when I think I have something valuable to add.

    I don't know what Ella's issues are, but is she in Special Needs Preschool (aka Preschool Disabled) program? If not, you may want to contact your school district to have her tested for this program...She'll get the therapies she needs to help her reach her potential, in a way that is respectful and motivating.

    If this is the SNP treating her like this, I would request a meeting ASAP.

  5. #5
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    Default Thanks Suzi...

    Quote Originally Posted by Suzi
    Have you done any research on your dd's cognitive delay and what that means or has your dr gone over it with you? Regardless, your sweet dd is the same person with or without the labels. It is also so important to get the best early interventions you can. From my experience, I've learned that is the most important thing. to you and hope you get some better anwers than mine! I'd be sure to have a list of questions to ask your neurologist about the terminology in the report.
    Well, I wish we actually had a report! What we have at this point is just a verbal comment from the neurologist (he's actually a family friend, and this information about the syndrome was confirmed during an informal conversation after church on Sunday). So all that we really have is what we've researched online ourselves. I'm a librarian and pretty good at sorting out authoritative information -- it's what I do for a living after all! But we do need to sit down with the neurologist and our list of questions.

    As far as researching the actual delays, we've been tracking them for well over a year now. We first began suspecting something when she was about 10 months old and was having trouble learning how to work an EASY toy. She got tested for EI in January this year and since February we've been receiving services. Right now she's getting ST, OT & special educator one hour a week. What we haven't known, though, is the cause of the delays. If our neurologist is right, it looks like this may mean that we're looking at a genetic issue. (Sooo many questions - geez, it only just now occurred to me to wonder if this has implications for her children, or whether she can ever have them... ) But in terms of research, it's a whole lot harder to find information on something when you don't know why it's happening.

    Whoof, this is all so depressing! Thank you for the hugs. I need 'em.

    -- Joanne
    Last edited by AnnieJo; 11-22-2006 at 02:03 PM.

  6. #6
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    Default

    Quote Originally Posted by angeleena
    Sometimes I feel like the teachers and other kids at her preschool treat her like she is mentally retarded.
    How frustrating, not to mention inappropriate! It sounds like the student-teachers are in need of some serious educating.

    In Miriam's case though, I'm afraid, we DO have cognitive delays. And I'm filled with fear about the whole issue of "treating her like she is mentally retarded" because... well, y'know, some cognitive issues ARE lifelong.

    I guess it depends on what it means to treat someone as if she is mentally retarded. I hope that no matter what my daughter's issues turn out to be, she can be treated with respect and as someone who should be encouraged to live up to her full potential. I dunno. Maybe that's a pipe dream. Sigh.

    -- Joanne

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