new member Adele and others

[Guest guest]

Hi Adele,

I am a relatively new group member as well. In fact I think this is my third

" posting " . I wanted to respond to your letter mostly because my son will be 15

in March and I think it is often important to be communicating with others who

not only share in the diagnosis but the age range as well. Jake has DS and PDD

as well. Cute as a button but obstinate and can be aggressive at times. He is

mostly aggressive when we are forbidding him something or taking something away

from him (which is almost understandable!) I think he struggles so much in his

communication that lashing out has been one way that he communicates. Of course

he always gets some kind of talking to or a time out - but honestly at this age,

I wish we didn't have to treat him like a toddler with reinforcers for good

behavior and interventions for bad, etc.

He has been on Depakote for a number of months now (his only med presently)

because he seemed to match the description of adolescents with autism who have

subclinical seizures. Every so often he would just fly off the handle (mostly

at school) but occasionally at home and he just could not be reached at that

point. The times it happened with me I noticed that he was gradually becoming

overstimulated (like at a bowling alley with a bunch of " special " friends and

their parents). Anyway, haven't seen an episode in a while and he now sleeps

through the night which he did not do before the Depakote! But we are still

waiting and evaluating it.

I would be interested in hearing more about Carl, as I said, our sons are close

in age. I am particularly interested in the behaviors you mentioned because

there are other behaviors (such as talking loud to himself) that Jake does. It

is interesting in that I know when Jake is being a kid with Down Syndrome and I

know when he is being " autistic " . Do others have this experience?

hope to hear from you and others.

________________________________

> To:

> From: lubita_53@...

> Date: Sun, 6 Jan 2008 09:20:34 -0800

> Subject: new memeber

>

>

> By way of introduction, my name is Adele, I live in Minneapolis with my

husband and three children, all of whom are special in their own way. Our

youngest son, Carl (15 in Feb.) has Down Syndrome coupled more recently with the

PDD-NOS diagnosis. After all these years I joined this group along with the

UpsNDowns group several weeks ago because I was feeling particularly burdened by

our son's behavior and the ensuing doctor appointments, phonecalls, etc. We have

tried a variety of approaches and are now experimenting with various medications

in an effort to maximize his ability to learn and mature without his negative

behavior getting in the way. As he gets older (and bigger) the public displays

of oppositional behavior become especially problematic. Neither I nor my husband

choose to keep him medicated yet we must admit that the two medications he's on

(Citalopram and Abilify) seem to help him. He also takes Metformin and

Synthroid, as prescribed by a

> pediatric endocronologist. I think what wears me out more than anything is

trying to track the various medications, keeping notes to report back to the

doctors, and playing the role of coordinator for all his various services. It

seems to get in the way sometimes of just being a " mom " to our son, and

experiencing him on that level. Fortunately, despite his difficult behavior and

obsession with food (we have no sooner finished lunch than Carl is asking,

" What's for dinner? " That is usually his first question when he gets off the bus

in the afternoon as well!) Carl is full of compliments and love, e.g., " You have

such a cute face! " I've heard it many times and yet it never fails to brighten

my mood. How many people tell you that in a day?!?

>

> So, there's my story. I am a fairly private person so I don't know how often

I'll be adding my two cents' worth but I look forward to tracking the info

shared on therapies, medications, options for people with DS and PDD-NOS as well

as the personal feedback and sharing and will make an effort to respond to

emails and questions.

>

> Warm regards,

>

> Adele

>

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