Now Down Syndrome awareness

[Guest guest]

I wish Down Syndrome awareness month wasn't the same month as Breast Cancer awareness. All kinds of publicity on that. I actually looked for signs/posters online that I could get to take to work and my sons school and plaster them everywhere. Does anyone know where to get publicity stuff like that?

To: DownSyndromeInfoExchange Sent: Wednesday, November 12, 2008 3:13:06 PMSubject: Re: [DownSyndromeInfoExchange] Prozac statement from me

, I TOTALLY agree with your statement about us vs. the Austim group!!! They have gained so much in a relatively short period of time, and we're still way back here. Or so it seems. They have so much more awareness than we do. Tristan's teacher didn't even realize last month was Ds Awareness month - and her sister has Ds! But you should see the school during Autism Awareness month!

On Wed, Nov 12, 2008 at 3:03 PM, ~ Romero~ <noliptoday@bellsout h.net> wrote:

Carol,

Sorry but if your going to be saying all the positive stuff someone has to counter with the risks for balance.

I get that it takes time and money for research. And as I have said before while we all wish it was already done, until it is, we are all taking educated guesses and risks.

I think the main worry on this list is that someone new comes on here, sees part of the thread and only reads the positive stuff. I personally know of a mom who was unable to convince her pediatrician to give her child prozac so she gave her own prozac to her child. And continues to do so, and sees nothing wrong with it. Hence my harping on getting a doctor to give the prescription AND follow through with monitoring the child while he or she is on the medication. With the rest of the stated protocol easy to find and get, this is the one element that isn't, and so the one element that causes the monitoring rather than just the parental statements either negative or positive.

All,

Yanno this is the pit of my frustration with all things DS. We need to learn from the Autism group. They work together, for a common goal, which is a cure. We work for a fix. Two very different things. I personally think that holds us back in so many areas. We have so many fractured groups doing different things out there and no one wants to work with each other. Everyone seems to think they are onto THE way to do things. And while they may or may not be, each is left to fend for themselves for funding, research etc. Okay that's just my frustration talking.... I'm done.

      Jules Romero

-- *Re: [DownSyndromeInfoEx change] Re: Prozac and head growth

yea that is what I worry about.

To see Amber keep declining over the years. When I knew of something that would

help. And I sat back out of fear and did nothing....

I know everyones screaming RESEARCH.... .

I wish everyone could share with out that being repeated over & over & over........ .

I think everyone has read that and got it... Not being ugly now.

Just saying I got it. I think everyone else has too.

Carol