Re: Adele

[Guest guest]

Welcome Adele. I am Donnell and I have a son, DJ, with DS and autism, who is

12.

He is also medically fragile, has a g-tube and many medication and doctors and

appointments to go with it - not to count the therapies, therapists, etc. I can

relate to the difficulties of keeping records and reporting back to doctors. If

you are interested in sharing ideas to make this easier, I am willing. I have

some things that have worked for me, but I'm willing to learn more!

Welcome to this wonderful group. I know you will enjoy it. I, too, am fairly

private but have found this group to be so supportive and helpful. Chime in

when you can.

Hugs,

Donnell (mom to DJ, age 12, DS/ASD)

P.S. My mom-in-law's name is Adela. Similar! And she's a very good friend

and support to me!

Adele Bergstrom wrote:

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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