Triple Diagnosis: DS/Hearing Impairment/ ASD-PPDNOS New to list...Aloha to All!

[Guest guest]

Aloha!

My name is Desi McKenzie and I am (for the past 8

years or so) a single mom from Mililani, 'Oahu,

Hawaii, USA. My daughter Aubrey (dstr21,HI,ASD/PDDNOS)

who just made 10 last Thursday(!) is absolutely

gorgeous (such humility mommy!) with reddish brown

hair and eyes, and many abundant freckles! Her

nickname thus is- " Strawberry Shortcake! "

I am a self-employed piano, voice and choral music

specialist. Aubrey's older sister- just turned

13 and is an excellent role model! We also run an AYSO

Soccer VIP Program for children with special needs in

our community here in Mililani, Hawaii.

This is the first time I am posting on this list, as I

am finally ready to face Aubrey's finally

diagnosed-reality!

Some of you probably already know me from the

DSListserv where I have been for a long while.

I have been struggling with dealing with Aubrey's

increasing compulsive, repetitive, odd behaviors-

i.e. twirling socks (her hair until her finger gets

stuck in it), drawing multiple squares and figure 8s,

nose to TV, increasing self-isolation, nonsense

self-talk etc. which seems to have exploded over the

past six months or so...

Aubrey, has also regressed socially and academically

as a result of these increasing behaviors.

I have been very open with DSListservmates so that

they could learn from my journey...

Now...our family can really also use some " expert "

help from others on THIS list who have gone down the

same path...

In addition, DOE Evaluator also has asked me to send

out an SOS to other professionals on this listserv who

may better be able to point him out to sources

regarding other children with Down Syndrome who have

received this triple-possibly quadruple diagnosis (if

ADHD is added) so that he may refer to these sources

as he compiles final report and while he seeks

appropriate intervention for her in school and at

home.

The preliminary EBA report from the DOE Psych

regarding Aubrey has finally reached my hesitant

fingertips. Though the evaluator, who was extremely

thorough, seems to have struggled with making the

" autism " diagnosis within the verbage of his

report-Aubrey's ASD behaviors, whether officially

labeled or not (!) are certainly apparent and

problematic for her social and learning progress!!!

Evaluator wrote the following:

____________________________________________________

" Given the data that was collected during this

assessment, it appears that Aubrey does show

characteristics of some kind of autism-spectrum

disorder (ASD). Being that ASD issues fall on a

continuum, it would appear that Aubrey’s difficulties

tended to land more on the mild to moderate side as

compared to a severe designation. In addition,

Aubrey’s ASD symptoms did not fall “cleanly” on any

particular developmental disorder diagnosis (e.g.,

Autistic Disorder, Asperger’s Disorder, etc.). This

was probably partly because of the co-existing Down’s

Syndrome and hearing impairment issues. As such, the

student will be given a Pervasive Developmental

Disorder Not Otherwise Specified (PDD-NOS) diagnosis.

The mother also had concerns as to whether her

daughter was showing behaviors indicative of an

Attention-Deficit/Hyperactivity Disorder (ADHD). Both

her mother and the schools staff described Aubrey as

being inattentive, impulsive, and hyperactive, which

are the hallmark behaviors related to ADHD. However,

given the PDD-NOS diagnosis, issues related to ADHD

are an assumed to be a part of an autism-spectrum

disorder problem and are therefore not identified in

the DSM-IV diagnosis below.

Given that the examiner did not perform cognitive

assessment portion of this evaluation, it is not known

at the time of this writing what Aubrey’s cognitive

scores consist of. In the past, her scores have

ranged from significantly below average to average.

Given the unavailability of current cognitive scores

Axis II below is deferred.

XVI. Diagnostic Impressions (DSM-IV)

Axis I: 299.80 Pervasive Developmental

Disorder Not Otherwise Specified

Axis II: 799.9 Diagnosis Deferred on Axis II

Axis III: Down’s Syndrome, Hearing Impaired,

Allergies, Sleep Apnea, Asthma, Psychogenic

Constipation

Axis IV: Problems related primary support group:

Parents divorced, health problems in family

Educational Problems: Eligible for Special

Education services

Axis V: GAF = 41 (current)

____________________________________________

Any thoughts?

I have two immediate goals:

1) To take this one hour at a time if necessary, and

to remember that Aubrey is still the same beautiful

young lady she was yesterday, and a label is just

another label.

2) To use this new " label " to get EVERY possible

appropriate intervention available to her-in school

to improve her education, and-at home to better the

quality of all of our lives for now and the future.

Thank you for whatever help you can give Aubrey and

her evaluator, and especially her mommy and big

sister- who now know that they are NOT ALONE in their

daily struggle with " Strawbababababerry " and her truly

beautiful and unique self!!!

Mahalo! (thanks man!)

Malama pono, (take good care)

Desi McKenzie

Mililani, Hawaii