and ALL

[Guest guest]

and All,

As some folks here know, I cannot recommend this book enough:

MENTAL WELLNESS IN ADULTS WITH DOWN SYNDROME

http://www.amazon.com/Mental-Wellness-Adults-Down-Syndrome/dp/1890627658

(You might be able to find it in stores, but you can get it with speedy shipping

from Amazon very easily.)

As I started to read this book, my jaw dropped. So many little behaviors and

idiosyncrasies that I thought were probably due to autism are indeed seen in a

broad spectrum of people with DS. I mean to say that there is a VERY broad

range here of behaviors that are seen in people with DS. Does that mean that

more folks than we know also have autism? Don't know. Does that mean that

there is no such thing as a dual dx, that this is all " just " DS? Absolutely

not.

For those who haven't heard about this book, it was written by two of the

doctors who have worked at the Chicago area Adult DS Clinic. They have seen

something like 3000 adults over about a 20 year period, if I recall correctly.

I LOVE this book. The folks who wrote it are clearly very fond of their

patients. They write about everyone, not just the " superstars " . (Yes, I am a

little sensitive about how a lot of the books are presenting folks with DS. I

read Pueschel's book about adults at the same time I read Mental Wellness.

Pueschel was very selective, IMO, about only presenting stories about the " best

and brightest. " I find MENTAL WELLNESS to be much more honest.)

Here's the main reason why you should buy it and read it, though:

These doctors present many possible physical things to look for when someone's

behaviors/habits, etc., begin to change. They also present some really useful

strategies for a variety of situations. One of the things that was an eye

opener was the description of some folks' OCD-type behaviors. Some of the

anecdotes were downright funny but also very descriptive of ways to help our

loved ones cope with changes.

, the reason I am recommending that you read this book now is that there

may be some things in here that we haven't thought of (from our " list wisdom " )

that you can also take to your doctors.

Hang in there. We often see many new things going on during the puberty years.

I, too, wonder about endocrine issues. It seems our kids get thrown a huge

curveball sometimes during these times when the endocrine system is already

cranked up from thyroid issues. (My son's hypothyroid problem showed up during

puberty.)

Since she has Grave's disease, who knows what effect that has on her right now

as well? And have you checked and re-checked possible side effects from the

particular meds she is on for this?

Keep us posted. Glad you are getting so many responses during such a scary

time. I think that keeping some kind of videorecorder handy is a great idea,

too.

Hugs,

Beth

20 y/o Pete's Mum

Columbus suburbs, OH