I've seen your previous post on this same issue. I'm going to say something blunt and I'll probably be called mean and nasty and be told to go back to GP and have my post reported and all that but --

You have fears about ID. Fine. However, parents on the Special Needs Forum are dealing with ID, and we don't consider our children "less than." We don't weep and wail and gnash our teeth and sob into our sleeves and shake our fists at the universe. We actually like life.

If you have an obsession with ID, and a phobia about ID, I don't consider that to be a special needs issue. I consider that to be an anxiety issue and you should post in Health and Medicine.

If, on the other hand, you want tips about educating a child who actually has ID, I'm all about supporting you. If you want a support group, I'm here. If you want resources, I'm ready to provide them. But I consider your phobia and your fears of ID to be a tedious, overblown, and an eye-roller. Please get help for yourself.

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:I guess it is just suspected at this point. Subtle delays, not profound, but the social/adaptive delays worry me a lot.

Subtle does not sound like ID. What are speech scores like? Language is an OK placeholder for intelligence. It can be dramatically lower than IQ, obviously, but rarely is it going to be dramatically higher.

what do you mean by speech scores?

Have you had a comprehensive SLP eval with tests of vocabulary, language, etc . . .? What did the standardized scores from there look like?

Sorry - just now following up. They look 'average' apparently.

Subtle delays, and average speech does not sound like ID.

Are you the parent with a provider (social skills?) who suggested the possibility of ID, when your developmental pediatrician has not brought it up? If so, that situation to me sounded like a provider who wasn't clicking with the kid, for whatever reason, and jumped to a diagnosis she had no business making.

Yes, I am, and I admit that that comment haunts me. But my son also has a nero condition that often goes along with ID and always reduced normative IQ scores, so, of course, I am concerned.

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:I guess it is just suspected at this point. Subtle delays, not profound, but the social/adaptive delays worry me a lot.

Subtle does not sound like ID. What are speech scores like? Language is an OK placeholder for intelligence. It can be dramatically lower than IQ, obviously, but rarely is it going to be dramatically higher.

what do you mean by speech scores?

Have you had a comprehensive SLP eval with tests of vocabulary, language, etc . . .? What did the standardized scores from there look like?

Sorry - just now following up. They look 'average' apparently.

Subtle delays, and average speech does not sound like ID.

Are you the parent with a provider (social skills?) who suggested the possibility of ID, when your developmental pediatrician has not brought it up? If so, that situation to me sounded like a provider who wasn't clicking with the kid, for whatever reason, and jumped to a diagnosis she had no business making.

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:I guess it is just suspected at this point. Subtle delays, not profound, but the social/adaptive delays worry me a lot.

Subtle does not sound like ID. What are speech scores like? Language is an OK placeholder for intelligence. It can be dramatically lower than IQ, obviously, but rarely is it going to be dramatically higher.

what do you mean by speech scores?

Have you had a comprehensive SLP eval with tests of vocabulary, language, etc . . .? What did the standardized scores from there look like?

Sorry - just now following up. They look 'average' apparently.

OP - Also for a very young child, I would suggest having an audiological evaluation and perhaps good vision screening just to rule out even slight deficits in those areas. If a child is not hearing at all frequencies this could impact speech development, too. In terms of what you can do as I noted in another post, keep your expectations wide open and give your DC as many opportunities to be with typical youngsters his/her age in natural settings. By this I mean going to library story times, using church or gym nurseries, going to playground and toddler pools in nice weather and as you can having play dates.

Our middle daughter who is a pediatric PT and has two very, very verbal children has had story time each night and in early years read the same books over and over. The only tv her kids had in earliest years were the Signing Time videos and especially for the five year old girl really did help bring on early communication skills. In terms of adaptive skill scores, I would put an emphasis on motor skills" pincer grip, play things which will encourage hand strengthening such as play doh, clay, directed play using say "color name"+ object to reinforce that abstract concept, in natural settings counting out objects, preschool settings will deal with the letter introduction and you could reenforce at home. Also just normal things of learning to feed oneself, to dress oneself as one goes along, to put away one's toys, to learn to share toys. Learning to follow one step and then two step directions is also another key.

I know waiting is very hard, but there is a reason why "official" clarification for testing for an intellectual or developmental disability does not happen until age 6. And if a child is fairly nonverbal at that time, it is key to get a place and a psychologist who has the background to test such a child. Here is one site with some milestones in terms of adaptive skills: http://www.ldonline.org/article/6039/. Also, if DC has a special interest in say cars or animals then use that interest in terms of teaching basic skills including language, colors, numbers etc.

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:I guess it is just suspected at this point. Subtle delays, not profound, but the social/adaptive delays worry me a lot.

Subtle does not sound like ID. What are speech scores like? Language is an OK placeholder for intelligence. It can be dramatically lower than IQ, obviously, but rarely is it going to be dramatically higher.

what do you mean by speech scores?

Have you had a comprehensive SLP eval with tests of vocabulary, language, etc . . .? What did the standardized scores from there look like?

Anonymous wrote:

Anonymous wrote:I guess it is just suspected at this point. Subtle delays, not profound, but the social/adaptive delays worry me a lot.

Subtle does not sound like ID. What are speech scores like? Language is an OK placeholder for intelligence. It can be dramatically lower than IQ, obviously, but rarely is it going to be dramatically higher.

what do you mean by speech scores?

Anonymous wrote:I guess it is just suspected at this point. Subtle delays, not profound, but the social/adaptive delays worry me a lot.

Subtle does not sound like ID. What are speech scores like? Language is an OK placeholder for intelligence. It can be dramatically lower than IQ, obviously, but rarely is it going to be dramatically higher.

OP - at this point focus on getting appropriate therapies for your child. ST, OT.

Where do you live? Are you working through Child Find/Early stages? Is your child in preschool?

I guess it is just suspected at this point. Subtle delays, not profound, but the social/adaptive delays worry me a lot.

We were similarly told (with a concern about lower IQ though not in the ID range) that waiting until at least 5/6 is advisable, because the options for testing between 3-5 aren't great. Honestly, I didn't follow up to ask what made them not great (not accurate, more likely to reflect issues that aren't cognitive, etc). But that does seem to be the standard recommendation (ours from a developmental ped). And in our case I think an inaccurately low score (and it sounded like the reality would be with our issues if we did get a low score, rather than ruling it out as a problem, we still wouldn't' actually know whether it was accurate until we could retest at a later age) had a lot more downsides than the current not really knowing state.

It's possible there would be reasons that would overcome that - in terms of usefulness of testing, I'd guess suspected ID (<70) might be one of them, but to the extent things are shifting and not so accurate, there seem to be some pros/cons. If you just want to pin it down, I'd say wait based on what we were told. If there are other reasons to pursue at the moment - school to get appropriate services, or it would change the course of X or approach to Y, it might be worth considering, in which case you'd want a good tester.

Okay. That makes sense. I am having such a tough time waiting, but of course would not want to push it.

Anonymous wrote:If ID is simply suspected, i'd wait for several reasons.

One is that neuropsych type testing is very limited for a kid that age, and what can be done is unreliable because they're not really consistent. So, you'll need to retest anyway down the road.

The other is that the damage that can be done by low expectations is huge. Schools are quick to track kids at that age, and to make judgements about what they're able to learn. Often times when a kid has a low IQ (accurate or not, see above about unreliable testing) then the school will see it as their responsibility just to get their academic scores up to match their IQ. But kids with ID are often capable of more than that.

I would absolutely do lots of specific testing == OT, PT, SLP, academic, ADOS (if there's any chance that's an issue), and lots of therapy, but I would stay away from neuropsych or psychoed unless you have a very good specific reason.

This. My child is a very different person at 6 than 4. We were told to wait till six to do one. I do not think he needs it now. If they do iq testing, make sure they do the nonverbal iq. Basically there is ot, speech, pt and a few others. Get services. 3.5 to 5.5 was the critical time for us.

If ID is simply suspected, i'd wait for several reasons.

One is that neuropsych type testing is very limited for a kid that age, and what can be done is unreliable because they're not really consistent. So, you'll need to retest anyway down the road.

The other is that the damage that can be done by low expectations is huge. Schools are quick to track kids at that age, and to make judgements about what they're able to learn. Often times when a kid has a low IQ (accurate or not, see above about unreliable testing) then the school will see it as their responsibility just to get their academic scores up to match their IQ. But kids with ID are often capable of more than that.

I would absolutely do lots of specific testing == OT, PT, SLP, academic, ADOS (if there's any chance that's an issue), and lots of therapy, but I would stay away from neuropsych or psychoed unless you have a very good specific reason.

If you did this - where did you go? Would you recommend?