intellectual disability — The Bump
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intellectual disability

Does anyone know the signs to look for to know if a little one has an intellectual impairment? Can an MRI rule this out or confirm? At what age would it be obvious? When or how do you know the level of impairment?

I am a FTM, so I don't have any experience with other kiddos. My LO is very behind physically and in speech, but I've noticed that he seems to be behind mentally too. He grunts a lot. He only smiles or laughs if you physically touch him. Nothing else really gives him much of a reaction. He is making progress with the help of OT, PT, and ST that we get once a week but it is slow progress. He is rolling with minimum assistance, but that's all. We are a long way away from getting on all fours.

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Re: intellectual disability

  • I think each state does ID testing differently, but I know that some kiddos will get IQ testing done when they are older.  A neuropsych is also an option.  Not sure what they would do for someone who is younger, but I am guessing that there is something that a Ped could test for.  I know that when we go in to our Ped for wellness checks, we have to fill out a Developmental Milestones packet, and that gets sent to the State.  If we fall below in any area, they discuss therapy, and I would guess if it warranted, additional testing.

    Just so you know, my daughter grunts still a lot too.  She is still just babbling and really has no words, except 'yeah'.  Is he able to follow any commands, like pick up the diaper?  He still may be too young for stuff like that, but those are the type of things I would look for.

    Good luck with all.

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  • He couldn't follow a command like "pick up a diaper". He doesn't seem to even know what a single item is, he doesn't even know to look at me when asked "look at mama". He literally just started to reach for things earlier this month. He doesn't know how to wave hello or good bye.

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  • He's 11 months? I think he's way too young. You mentioned he's very behind gross motor wise and speech wise. That is going to have an enormous effect on what you can see from him cognitively at this point, but (IMO) really only means he is not developmentally at a place where he can show you what he knows. Talk a lot, read, slow yourself down (this is the hardest one for me) and believe in his abilities.

    The fact that he's waving is awesome! I will share my experiences in the hope they give you hope :). DS at 11 months was well, rather a lump. He was just starting to say baba, didn't seem to recognize pictures or anything and wasn't even rolling. He could sit, but would need to check his balance with a hand or two often so had a very hard time functionally playing. He would reach when well supported in a high chair, but we had to help facilitate his play. He started getting more motor skills between 12 and 18 months and started 4 pt crawling (slowly) at 18 mo. Building that strength in his core and upper body through rolling and crawling helped stabilize his upper body for fine motor work and he learned to wave and eventually point (before it was hard to isolate his finger, but he'd do a broad gesture). The more he moved, the more aware of his surroundings he seemed to get (glasses helped as well) and the more he began to talk. Between 16 and 18 months his speech took off and by 2 he was speaking at an advanced level for his age. At 3, his motor skills are still behind - he's just starting to walk and he's a bit delayed in fine motor as well. But he speaks beautifully and from that, it's very clear that there's quite a bit of good things going on in his mind, he just wasn't able to show us through movement. There are cognitive tests through the Battale and other EI type measures, but IMO, especially if your child is delayed motor wise, they just can't show what they know until they've gained more skills. The one that always got me was does your child follow an instruction like bring me a shoe (from a different room)? Huh? It'd take my kid 10 minutes to inchworm himself into the other room and then how would he bring the shoe back to me? Stupid question when one isn't walking/crawling very well.

    It was a really hard and frustrating time so I feel for you - 9 months to about 21 months were some of the hardest/lowest points I think I've had emotionally. I tried really hard to hug and just love him a lot, feel like I was getting the right therapy/medical team in place to support him as he might need, etc. I found the books Teaching Motor Skills to Children with Cerebral Palsy and other Motor Disorders and Gross Motor Skills in Children with Down's Syndrome to be extremely useful (at the time we didn't know DS had CP though we suspected and he doesn't have Down's, but the books have great ideas). Later I found Anat Baniel's book Kids without Limits which also had some neat ideas.

    I hope he continues to make progress and soon shows you what he is capable of. The only other suggestion I have is have you seen a pediatric opthamologist yet? Since you mentioned he doesn't respond as much unless you physically touch him, I wonder if he is having some difficulty seeing/processing visual information too?

  • I think you misunderstood, he does not wave. He has an appointment with a pediatric opthalmologist at the end of March.

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  • Agh! I meant rolling and was typing many thoughts away. My son didn't wave until around 18 months. If he's just reaching for toys now and not crawling, he may just not have the core strength/shoulder stability to wave yet. Can he push up well in tummy time? If not, that's probably a great thing for them to work on in PT to help start to develop that strength and stability - it will facilitate the muscle control needed for reaching, playing, waving, etc.
  • I agree with Kar.  Sometimes a person with a physical disability can appear to have an intellectual disabililty as well - simply because they cannot perform a simple task.

    I also believe it is very natural for a parent to want to know what is going on.  I can't count how many times I've said, "I still don't know if she's smart," when talking about my DD with DH. We want to know what our children are dealing with. We want to feel prepared and we want to make sure we are doing all we can. But, at eleven months, you just can't know. I don't believe an MRI can tell you the whole story either.

    Lily's MRI showed overall grey matter loss. On the surface, this would indicate that Lily should have an intellectual disability. But, according to all the testing we have ever done, and all the therapists we have ever worked with, Lily does not have an intellectual disability.  Of course, Lily is only 2 and we won't know just how intelligent she is until she is older. But, that's with all children.

    If you are worried then you could ask EI what their last test revealed.

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  • I think MRI can rule out/confirm some things if it's a physical brain issue. Otherwise it might just be a wait and see type of thing.

    Have you seen a geneticist? I would maybe ask for a karyotype with a microarray.

    It has to be so hard without a diagnosis. I know we've talked about this some privately. We knew at 18 weeks pregnant that Lauren would have an intellectual disability and that it would be a direct result of her having Down syndrome.

    But Grant could also just have physical delays that look like developmental delays at this point. It's so hard to tell when they're so little. I'm glad you're taking him to see ophthalmology, that's a good place to look for "obvious" issues. Same for hearing- have you seen an audiologist? That would be a great step too.

    I think a geneticist will go over what his birth was like, what your pregnancy was like, family history (which is often extremely useless!) and talk about which things might be worth testing for. If it were me I would ask for a referral.

    Hugs! You are not alone and you have a whole community here to back you up and support you- however that looks to you.

    Lauren has Down syndrome and a complete AV canal heart defect
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  • I'm still waiting for the results of the geneticist. I do know that he was negative for fragile x. They are doing the microarray.

    He is seeing an audiologist shortly after his birthday.

    Our developmental pedi called today and cancelled our appointment at the end of March. How we are set to see him in June! That seems forever away.

    He just seems so out of it and not where most kids his age are in terms of awareness. He will smile and giggle, but it usually takes touching him. He will laugh on his own when he stares at lights. Nothing that you show him or say to him gets him to react.

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  • Did he have any birth related difficulties? Has he had an MRI? Even findings there won't tell you whether he has a cognitive impairment or what his potential might be, but it might give you a little more insight into what might be some of the reasons for his delays.

    That sucks that the dev pedi cancelled his appointment - given his age, can you ask your regular pedi to call and push to see him sooner? The dev group we worked with was pretty good at helping coordinate care.

    Does he seem to see and recognize you or just lights? Maybe look up CVI? It's a long stretch, but the not responding to things besides touch and light make me wonder.

  • I think time will tell and 11 months is to early to know how far delayed he will be. Though it sounds like by what you are describing, he does/will have intellectual disability.

    I think the tell tale signs overall is 1) the social/emotional/cognitive milestones. My DD never smiled in response to someone smiling at her, never (and still doesn't) follow directions, wave, talk or point. I believe mentally she is somewhere around a 8-12 month old. And she's almost 5.

    2) how far behind he/she is from her peers developmentally. The more DD's peers could do, the more obvious it became how delayed DD was. Everyone was racing past her (ever her 21 month old sister has well surpassed her in all areas of development) and the list of delays just kept accumulating.

    No therapist, teacher or doctor has brought up the dirty terms of intellectual disability or mental retardation but I know it's there. I guess they know I know so why pound it into me?

    Oh and her MRIs have always been normal. So I think it is biochemical. But she has a unknown genetic syndrome so we may never know. 

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