Special Needs

intellectual disability diagnosis

I have had many doctors and therapist tell me that they think my son is cognitively impaired. At what age can you receive an ID diagnosis?

Background - My son turned 2 in Feb. He was 40weeks and healthy, no nicu time. We still have no idea of a diagnosis other than we know he has a micro duplication that no doctor thinks is the issue. He is G tube fed, and cannot crawl, walk, talk, or communicate. He understands kisses and a few other small things. But not his own name. He has perfect head control and can sit when placed in that position.


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Re: intellectual disability diagnosis

  • Assembly_ReqdAssembly_Reqd member
    edited May 2014
    I have no idea. I was going to test Nate this December and decided to wait for him to develop more. I assume you have had his hearing checked, but that wouldn't explain the gross motor stuff. His MRI was clean too?
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  • We were told Chris was ID when he was 2. At 3 we were told he would be on track to be if we didn't get him more speech. At almost 6 we were told he had an IQ of over 135. My point is that the assessments at this age aren't accurate. That, and genetics can be responsible for all of his issues. It is the case with us. What is the genetic change?
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  • Agree with the others.
    Our Dev. Pedi doesn't recommend IQ testing before 5 outside of a specific need until 5/kindy because it can be hard to get an accurate result if the kid has any kind of speech delay.
    So I would keep the info in my pocket as a possibility but take it with a grain of salt at this point. 
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  • I am in a very similar boat as you.  DD has an ASD diagnosis, and initially was given a diagnosis of Global Developmental Delay. But when we recently moved into a new school district and began assessments for preschool placement (she turned 3 in April), we were then told she had "cognitive delays". They didn't give us a diagnosis other than Early Childhood Developmental Delays. She does walk, but is at a ~10 - 18 month level developmentally in all areas (the lowest is her speech).

    They did do cognitive testing on her, but I take it with a grain of salt since she is so young still. I also wonder when we would get that official diagnosis, but for now, the services she is getting are sufficient and it wouldn't benefit her.

  • His MRI showed delayed white matter growth. His duplication is on 5p14.2 and 14.3

    I'm not upset about the ID stuff. I want to get him the diagnosis now. Just not sure why the doctors tell me they think he is but they are not giving me the diagnosis. Not sure who to go to in order to get the diagnosis.


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  • My little one had delayed mylenation. https://www.rarechromo.org/information/Chromosome 5/5p Trisomy Microduplications of 5p13 and 5p14 FTNW.pdf

    I couldn't find info on the 14.3. Rarechromo.org was a big help when we were newly diagnosed.
  • Thanks mommy. Grant is actually talked about in that article. He is the one who loves wheel of fortune. :)


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