[tri-mosaic] Re: [tri-med] neuropsychs

----- Original Message -----
From: <Kjejohns@xxxxxxx>
> Just curious!   How many of you have seen a neuropsych for your trier??
Why
> did you go??  And what did they do for you??

I know many people on the lists are against IQ testing but particularly for
mosaicers I think it can be helpful - if done appropriately of course. IQ
testing is more than an IQ score.

Alex had his first neuropsych evaluation at about age 2 1/2. I pushed to
have it done for a few reasons. Mainly because I was sure he wasn't
"severely cognitively impaired" as the doctors were telling me (due to the
T-18) but that he was delayed because of a lack of communication skills. The
second reason was because we were travelling to Utah to see John Carey and
doctors at John Hopkins and I was worried that I would need to "prove" that
Alex was worth treating.

I was EXTREMELY selective about who did the testing. It was done under the
guidance of a developmental pediatrician who specialised in developmental
problems in children with a hearing loss - she understood the impact of poor
communication skills on learning. (Alex was essentially non-verbal at this
point and I was being actively discouraged NOT to sign). The actual tester
was a psychologist who also specialised in children with communication
disorders.

We chose the Griffiths as the test because that had norms for under 5's plus
could be administered and modified to remove a lot of the physical and or
communication parts of the test.

We also chose not to do a total score but to report only the subtests. That
way officially no-one had his IQ result (though anyone, including me, who
has any understanding of these tests could work it out) I didnt want the
education system getting their hands on only an IQ score unless I wanted
them to.

I have the subtest results here but it confirmed what I suspected. Alex had
minor problems with fine motor, gross motor etc. Major problems with
communication and zero problems with problem solving (abridged version).
That confirmed what I suspected - he didnt have a problem with cognition but
did have a major problem with communication. I therefore redirected all my
efforts into setting up a formal communication programme for him and having
the paperwork to back it up helped immensely. If anyone is curious his IQ
score at 2 1/2 was about 76 or mild to moderate cognitive impairment however
always with the proviso that the results were impacted by communication
problems.

Fast track to school age. I again decided that it was time to get a "new"
picture. Alex was now verbal, although minimally so. He now had hearing aids
as well as sign language etc.

The snapshot at age 5 was very different. He no longer had major problems
with communication, but mild to moderate. Gross and fine motor still held
him back some. He did not have a learning disability despite having a
phonemic awareness disorder, probably because his problem solving skills
were so good. So the information that we got was very different but equally
as valuable. (it also criticised me - I had to back off and let Alex do for
himself, particularly in self help areas such as eating LOL) His total IQ
score had gone up to 95 putting him very much in the "normal" IQ world. It
meant that no-one could argue against mainstreaming. It gave us the support
we needed to have him in a learning disability prevention program (eg
reading support) to prevent problems because of the hearing loss and so on.
It also showed of course that with the right supports Alex could overcome
the issues of his physical problems.

School do not officially have his IQ score - they still only have the sub
scores and a general statement that his IQ is within the "normal" range.

Alex will be having another in a few months (you cant have them any more
often than 2 years because of retest artifact) and that will be for a
totally different reason - I am frightened that he is regressing and losing
the skills that he has. Because we have these baselines we can easily see
even though he will be having a different test. The last two were
Griffith's, this one will probably be a WISC or maybe a WIPSI. The type of
test is important. ALL these tests are geared to measuring against the
normal population - not to show how far behind they are but to show the
areas of deficit. However there are specific tests geared towards physical
issues eg gross motor problems, language problems, ethnicity (can be VERY
important), behaviour issues and so on. Choosing the right test, and the
right tester, one with experience in the area is important.

So in my humble opinion - should you have a neurospych done? Depends on what
you want out of it. (oops feeling those splinters) I think they are good IF
they are used correctly. They can be misused eg to categorise a child as
teachable or not teachable. But that was NEVER the intent of this sort of
testing. It has always been designed and intended to be used to identify
defecit areas so that they can be remediated. Anyone who simply uses the
total score doesnt understand what the testing is all about and SHOULDN'T
HAVE ACCESS.

<<trip, stumble, fall>> getting off the soap box..........

One of the most difficult things to do is to paint darkness which
nonetheless has light in it.
- Vincent van Gogh

Keep Looking for Rainbows!!!
Karen, Mum to Alex (7, T-18 mosaic)
Sydney, Australia
http://members.optushome.com.au/karens
http://www.trisomyonline.org

                  Building ___ooOOoo__ Rainbows
                       www.trisomyonline.org
                  Families Helping Families On-line

Other related posts: