Developmental Delay and MR?

iVillage Member
Registered: 12-05-2007
Developmental Delay and MR?
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Sun, 05-11-2008 - 4:52pm

I posted a while back about my son Dylan. He is now 18 months old and has hypotonia and Developmental Delay and in tons of therapy right now (PT, OT, soon speech, and floortime). He has made lots of progress, but it comes very slowly (as you all know). He can walk for a short bit holding 2 hands, cruise, sit up on his own, army crawl and babbles a lot, but no words yet. I was wondering, does this mean that no matter what amount of therapy I do for him, he is bound to be MR? I know that they can not test his IQ really until age 3, but if he is this delayed now, should I throw in the towel basically and assume he will be MR? Do any of you that have dd children older than 3 have a child that is not considered MR? I know this may seem very forward, but everytime I search online about developmentally delayed children under the age of 3, it translates to MR in adults. I just realy beg and plead that this is not the case with Dylan, and when I see progress, I feel like I can not give up hope that things can change in the next 1 1/2 years, but I usually feel like I am just in denial that he really is MR. Thanks for your input.

Jody :)

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iVillage Member
Registered: 06-28-2007
Sun, 05-11-2008 - 5:11pm
Jodie,
I don't think it automatically means mr. I don't remember the details of your previous post and Its easy to let it get to you. The internet is great for research but not always appropriate. You have to be able to sort through it. If you are seeing progress I would keep up with everything. I think you need a balance between opimism and reality. Waiting to see how its going to turn out is hard.
In our case, Kristin who is 2 1/2 has an underlying brain disorder (no specific diagnosis though)and she still cannot sit unassisted and is at a 3-6 mo level developmentally. There is not doubt in my mind she will be mr but I am still trying to do everything I can to put her at the highest level she can be. From your post I don't think I would automatically assume mr and even at 3 the testing can be difficult. Hope you continue to see progress and try to keep up hope that he will surprise everyone! Kari
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iVillage Member
Registered: 03-24-2008
Sun, 05-11-2008 - 9:09pm
Wow, Jody, you could be me. I've haven't posted a lot but just yesterday posted about my concerns about my daughter and her future. Anna is 25 months, tests around 12 (and the neuro thinks that is a generous assessment). Look under the "kitchen table" section for "voice of experience gdd/hypotonia" or something like that. I, too, have the same concerns as you do. Anna has hypotonia/idiopathic GDD. Normal MRI. No real reason so far for her delays. Just began crawling on all fours, wears AFOs which help her stand (she doesn't pull to stand, though), no words (except repeating "mama" "dada" but hasn't assigned these words to us). This past visit the new neuro gave me a handy mathmatical equation to figure out IQ, to which Anna's is 50. I feel torn between being positive (Anna has consistently made progress since we began EI at 11 months), keeping working, working, working (OT, PT, ST, EI group each week) to help her progress and... well... grief. Grief for what could have been (what should have been). Why. Why is she like this? What did I do, or didn't do? What is her future? Ugh. And, I know, I know, it could be worse. Many others out there (and on this board) have much greater difficulties than my family does, but I still want the freedom to feel bad about all of this. And, part of what is hard, is not knowing.
Ok, so none of this is much help to you, but maybe it will help to know there are others like you out there. I hope you find the information you are looking for. I'm pulling for you guys!
Heather and Anna
iVillage Member
Registered: 08-14-2005
Sun, 05-11-2008 - 9:36pm

I think it depends. I think it depends on what's causing the delays. If it's in the brain, it could depend on

iVillage Member
Registered: 03-27-2003
Mon, 05-12-2008 - 7:40am

Carol's right......and one more thing to remember (and I'm not just placating you!!!) is that kids with receptive difficulties rarely do well on IQ tests - verbal, non-verbal, etc..

iVillage Member
Registered: 03-24-2008
Mon, 05-12-2008 - 7:41am

Hi Carol, the formula is mental age over chronological age divided by 100. So, Anna is 25 months, testing at 12 months equals 50. Does that make sense?

I don't know why I care about that number, probably shouldn't. Really, what does it test anyway? I remember taking an IQ test in school and was told it measured ability to learn, but doesn't it just measure your ability to learn quickly? People can learn, just at different speeds, right?

And, Carol, thank you for posting about Meghan. She looks sort of what I picture Anna looking like when she's older (see my avatar pic). And, like you write, she's doing academics! She's in school! She's a regular kid (albeit having more challenges than her peers)! I guess I have a skewed (and completely un-PC) view of MR. I should try to learn more about it before I randomly judge.

Happy belated Mother's Day everyone!
Heather
mom to Anna (hypotonia, GDD)

iVillage Member
Registered: 05-28-2005
Mon, 05-12-2008 - 8:25am

According to the American Academy of Neurology Practice Parameter
http://pedclerk.bsd.uchicago.edu/devdelay.html

GDD is reserved for children 5 and under. And it means delayed in at least 2 areas of these areas: Speech, Gross, Fine, Social, Cognitive.

Kids that are labeled GDD are not always MR. But kids that are determined to be MR later are were GDD. It depends if the there is a cognitive delay. So for example a child that has gross motor and a speech delay would be GDD but may not grow up to be considered MR.

This sheet also outlines how neurologists are to proceed with testing if they suspect GDD and even MR. How they look to rule out Fragile X etc.

DD has casually become a nice way of saying MR but it's not accurate according to this.

In fact this sites says that DD is relatively common.

I hope this helps
Suzanne

iVillage Member
Registered: 02-26-2004
Mon, 05-12-2008 - 8:39am

Honestly, Chances are he will have at

a href="http://s34.photobucket.com/albums/d134/stephhastings/?action=view&current=chris11006.jpg" target="_blank">Photobucket
iVillage Member
Registered: 08-14-2005
Mon, 05-12-2008 - 10:13am
Thanks for the formula Heather! Of course, the really tricky thing with that is measuring the mental age. For a lot (most?) of our kids, taking tests to accurately measure what they know, understand, can learn, is pretty difficult. It's a guess - so for Megan, we just keep our expectations high.
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iVillage Member
Registered: 04-09-2003
Mon, 05-12-2008 - 2:35pm

Just to add to what everyone else said, I don't think you are in denial that he might be MR, but you should, I suppose, be open to the fact that

 

iVillage Member
Registered: 12-05-2007
Mon, 05-12-2008 - 9:24pm

Thanks everyone for replying to my post. I understand and respect all of your thoughts. The reality is, my son is delayed and we are not sure what's causing it. He is having an MRI on July 1st, so maybe that will tell us something (I really hope it doesn't show anything and comes back normal of course). I see consistent progress, but it's so slow. :(
He is doing better and getting stronger everyday and I know that I should just be happy with that and keep staying positive and believe that he will be "ok", maybe a little quirky, but self-sufficient and independent and happy, but then sometimes I assume he won't and then I get depressed. I just wish I could look into Dylan's future and see what he will be like so that I can have some clarity. If he needs some extra help in school fine, but is that going to be all? I just don't know...
Do all of the school aged kids out there that are DD go to special needs schools or are they at normal schools with IEP's?

Jody

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