Tuesday, August 10, 2010

I need input..new blog?

Okay. God's been elbowing me again.

So I am thinking about a new project. A Down Syndrome/Special Needs Blog.

Elise's Blog as it were:

There are a lot of websites out there with all kinds of technical information out there...I can find it fairly easily and so can most parents...But after the initial blitz of information, I find that I, and most parents that I talk to, LOVE to hear about what other kids are up to...those who are older, and "been there, done that" and those who are "peers", fighting the same fights. It makes it not so lonely.

At first I contemplated just a stream of consciousness type of blog...day to day struggles/triumphs, reflections and useful links...maybe even thematic...

After today...(Long Story) I am considering that maybe a weekly question/answer type of thing for "outside" parents...those with typical kids, but who want to know what "we" are going through, how THEY should interact, what they should tell their kids, what they ought to ask but don't know how to...

What do you think? Good idea? Bad Idea?

If you are a Typical Parent, and you would like to see something like this, what would YOU want answered? If you don't feel comfortable asking "out loud", please email me: underwater9800@yahoo.com I promise not to get offended. I REALLY want to know what goes through your heads.

If you are a Special Parent, what do you wish you could tell people when they look at your kids cross-eyed? What do you wish they knew? What could they do to make things easier for you? What could they do to make things easier for your kids? Please email me, too!! I know what is in MY head, but I am not the only one fighting here...we need to support each other...and we need those around us to know more.

Please help me work through this!! Thanks!!

And regardless where you fall on this subject, please pray with me, that I "get it right"!


  1. I love this! I really think a weekly post would be great.
    As a "typical" parent, I'm always concerned how to acknowledge a child with special needs in public. I know most people stare, or look and turn away, but when I see someone with Downs, my face lights up and I can't help but smile. (Hm, maybe I'm weird.) And then I always wonder if the parent or whomever is with them, or even if the person, thinks I'm some weird whacko that is just patronizing them. I don't want to come off that way. I think I do it mostly since we are building our family through adoption and have always felt that God has placed a "special needs" adoption on our hearts and more specifically, for DS to be that special need of our future child.
    So, sorry for rambling. But, I think my question was, how do you wish the public would act towards Elise?

  2. I would definitely enjoy reading this blog and think you should just do it all - questions and answers, stream of consciousness, cute Elise stories and updates. I can think of no questions i have right now but I will send them your way as I think of them. I think a blog would be a great resource. I use blogs as research for all kinds of things. Sometimes you don't want the science, but the personal stories.

  3. I agree with the previous posters...and I love that you want to do a special blog about it all! I say go for it! In my case, my "special" child may be developing on track--(since his syndrome doesn't have an impact on his development)...but because he looks "different" I can relate to the same types of stares and occasionally have people ask me things like (in hushed tones as though they know it crosses a line of some kind) "is he okay??!!?" and seem so surprised when they observe him long enough to realize he is actually pretty "normal". (sorry, venting...) I HATE our overly stereotyped perfectionistic society where everyone judges so much from how things look on the outside. I think that is one of the hardest parts of being a "special" parent...we know our kids are different for various reasons...but we just see them as our children and expect them to follow the same household rules (as it fits with their development) and of course we love them just the same...if not with a bit more intensity because of all we have had to overcome with them not to mention the ongoing fears for their health, lives etc...plus, we fight a little harder for them, since we have been given the unique role of ADVOCATE and parent. ANyway....I'll stop rambling....but I'd absolutely LOVE to see you address all of these kinds of things...it would be a great resource and you certainly have the talent for it!

  4. At this point, I am still in the trenches. I can't think about being an advocate right now b/c I'm too busy dealing with the day-to-day issues and still grappling with the diagnosis. So...maybe just some mental and emotional advice from someone who's been there? :)