help with evaluation

[Guest guest]

's Mom...I had Tori evaled at a local Behavioral Health Services center by a

Psychologist. I already knew she had Ds/PDD but needed it confirmed to get her

the services she needed. If you go to the Autism Research Institute's site

there is actually a " survey " you can do on than pretty much gives you his

weaknesses and strengths. This helped alot and pinpointed Tori's weaknesses to

a t. Our kid's with Ds have enough to deal with a being labeled; however, if

there is a dual diagnosis, they deserve the services out there to help them.

Kennedy Kreiger has a " score sheet " depicting kids with Ds and sensory issues

and one for kids with Ds and ASD. You can compare both sections and this too

will help you and others see his weaknesses. They provided the sheets to us at

a workshop when the NDSC conference was in Phila.

Hope this helps! Keep fighting!

Liz-Mom to Tori 4 1/2 yrs.

help with evaluation

We are new to this group - my son is almost 6 and I've been saying

for years he has autism and down syndrome. I saw Dr Bases at HUMC in

NJ but he says no - based on a 1 1/2 hour appointment and my son's

ability to connect with him on a small social/play scale. I have

reviewed all the tests given for evaluations of autism/pdd and have

read every word in the Disability Solutions special issue from 1999.

My son shows almost every sign of autism. Do I let the school

schedule a complete outside evaluation or do I consider the Kennedy

Krieger Institute for a complete evaluation personally? Anyone with

any ideas on what to do when your gut says one thing and everyone on

a professional level says something else?

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[Guest guest]

I can relate - my father's a psychiatrist and does not believe that

our daughter has autism. He thinks she makes too much eye contact and

is too verbal and social. As much as I respect my father's work in

his field, he is not an expert in autism, nor in child psychiatry. I

trust those who work with my daughter every day and ARE experts in

that field.

At any rate, the other ladies were right: go with your instincts.

Find those answers, and find them with people who will take a LOT of

time with your child before reaching a conclusion that might otherwise

be erroneous.

You mentioned only one doc that said your son was not autistic, but

then said that " everyone on a professional level " disagrees with your

gut feeling. Are the teachers, therapists, and experts at school

disagreeing with you as well? (I'm just curious about what routes

you've already explored.)

Our experience was a little opposite of yours. We had not thought of

autism, hadn't heard of the dual diagnosis, etc... We were thinking

our daughter was ADD or something, but not sure what. Finally her

teacher came to me, told us she had had a behavior/autism specialist

observe our daughter, and thought that she was autistic. We opted for

the full evaluation, and although it took 6-7 months, it was worth it.

The teachers started implementing new techniques (with some success)

even before it ended, and that evaluation, along with the results,

will be valid in any state if we have to move. Granted, her school is

pretty good about special education services, and we were unaware of

any other good place to go (like KKI) nearby.

Given all this, I would recommend considering the following. If you

haven't done the evaluation at school already, it may help in that the

people who work with your son every day will also help in the eval (or

at least they should). It's also more convenient, and once done, it

is possible that the school will then pay (or help pay) for an

independent external eval (maybe that's what you're talking about)

with someone of your choice if you disagree with their findings. I

know that was the case in TX, but it may depend on the state. I would

also consider how the KKI evaluation will hold up in other states, if

there's any chance you might move in the near future.

I hope this helps! We're still new to all this, but I can say that no

matter what happens, this listserve is a wonderful resource. I wish

you the best of luck!

(mom to Ellen, 7, ds/autism)

>

> We are new to this group - my son is almost 6 and I've been saying

> for years he has autism and down syndrome. I saw Dr Bases at HUMC in

> NJ but he says no - based on a 1 1/2 hour appointment and my son's

> ability to connect with him on a small social/play scale. I have

> reviewed all the tests given for evaluations of autism/pdd and have

> read every word in the Disability Solutions special issue from 1999.

> My son shows almost every sign of autism. Do I let the school

> schedule a complete outside evaluation or do I consider the Kennedy

> Krieger Institute for a complete evaluation personally? Anyone with

> any ideas on what to do when your gut says one thing and everyone on

> a professional level says something else?

[Guest guest]

Thank you for those who responded to my first post. When I said

professionals, I meant the teachers and aides at the Felician School

where my son goes and our school district case manager, and the

developmental pediatrician at HUMC. I have not really spoken to any

of the therapists at this new school about it. I can say is

like no other DS child I have ever met. I have been active in a

local support group from day one and I have always been a " presence "

at my son's school - and he has been in school since he was 2! I did

do an intake survey over the phone today with KKI in MD and am

awaiting Dr. Capone's response if he wants to see . I'm not very

concerned about his new school placement yet, just what additional

therapies and techniques that can be added to his IEP to address the

issues. ABA was introduced to at a very early age by a spec ed

teacher sent in from the state. did and still does respond to a

task tried, completed, or meeting approval with a clap of his hands

and a " yeah " - the ONLY word he says. I am starting with trying to

get the school to have evaluated by their behavioral specialist

who is the spec ed teacher for the autism children in our district.

I want her to see him at our house, in his environment. I feel that

this is a truer respresentation of my child in his natural state.

After that, I don't know which way it will go...one day at a time. I

appreciate the " talk " because I feel most people close to me are

tired of or indifferent to the issue. You have to feel it in your

heart when the strings are tugged by the child...