Vincent’s EI has been out for some 8 weeks due to an emergency surgery. As of last week she is back, and Vince has been really happy playing with her again. He has been showing off signing and running about. Due to her surgery, she can’t pick him up, so we have been at the center she is employed at rather than her coming here for his last two sessions.
Today as I was there and Vince was running around in the hall, climbing everything (a lot) he could find, the EI manager/boss came up to me. She asked if there was anyway I would be willing to talk to one of their classes of EI students. Basically, the person who was supposed to come had cancelled in the last minute and there was a lecturing hall full of students waiting for her. As Vince was being cared for and offered a huge breakfast (the bribe they gave us for having to cut across town for his session), I went and talked in front of the class about being a parent to a child with special needs, and what I found important for the EI to understand from the parents view.
I told them for us it has been important to understand why we are doing something, or what a specific movement/practice will bring and what are the little steps in between the big steps. I told them that I believe they should go and check the national down syndrome boards once a month or so for the latest updated information. I also told them to listen to the parents, as the parents turn out to be the biggest experts and many do research on a daily basis.
I also got to tell our storyabout finding out that Vince having DS. I told them how we thought we would never smile again, I told them about waking up in the middle of the night with the words Down Syndrome pounding in my head, I told them about the fears of the unknown and I told them of the fears of the society and rude comments on the street. I told them how the two first people we told in real life did not know what Down syndrome was and how we had to try to explain it when our son was 7 days old, barely knowing what we were talking about. I told them about the huge lump in my throat when I just thought of the word Down syndrome. I told them about how we were not able to open the information package about Down syndrome for months as we just could not deal with all the facts.

Then I told them how I have the coolest kid in the world 🙂 How none of that stuff bothers me anymore (except for on rare occasions) and I told them that my kid is running, climbing, signing, talking (we have a word! DOG it is) and running around charming every one around him. He laughs a lot and he enjoys being the center of the attention. I also told them I would not trade him for anything in the world.

It is funny how I can almost not remember exactly how hard it was. It is like all that stuff happened in some other life of mine. Down syndrome is no longer a word filled with fear, crushed dreams, sadness or unknowns. All it really is is just one tiny piece of something extra. Crazy how thhings we do not know can scare us so much!

Pst. I did all that in German. So my first public speech in German.
Pst 2: Conny and Ulli: the lecture hall had the pics of Marina from the 2007 calender 🙂

15 Responses

  1. How great that you an opportunity to advocate – and in German no less 🙂

    Yay for the Dog sign too – that is one of Delphine’s favorites.

  2. Good for you! That’s so cool.

  3. wow. that’s impressive on so many accounts. grabbing an opportunity so spontaneously and offering such crucial and personal information- and in german, no less.( yours is obviously better than mine!) i’m certain lectures like yours will be remembered in a whole different kind of cellular way.
    hope vince’s breakfast was good, too!


  4. Jag är stolt över dig Christina och Vincent och Bookie.
    Puss mamma Vincent

  5. Very very cool! I am so glad you got a chance to speak for yourself and for us other parents out here! 🙂

  6. I wanted to let you know about “Strong Love” a new film I produced about a couple both born with Down syndrome who decide to marry. I thought readers of your blog might find it a useful resource. In “Strong Love” the parents are the experts and had faith in their children despite what the “experts” told them some 30 years ago!

    A recent review from the Down Syndrome News:
    “Some scenes will make you cry, others will make you laugh. All in all, it’s a picture of life full of surprises, challenges and joy.”

    We have posted a short excerpt from the film of Holly and Jon practicing their wedding vows if you are interested in previewing it. http://www.youtube.com/watch?v=tLFhP5olHvE

    Strong Love is the story of world-class weight lifter Jon Shapiro and his childhood sweetheart Holly James, both of whom were born with Down syndrome. This documentary follows the couple over the course of three years, starting with their decision to get married. Their challenges, their triumphs, and their complex, sometimes surprising relationships with family and friends are at the heart of this inspiring film.

    STRONG LOVE will have the following screenings in the USA:

    April 19th at Truth or Consequences Film Festival, NM

    May 10th at the Metropolitan Museum of Art, NYC- Sprout Film Festival: http://www.gosprout.org/film/prog08.htm

    May 31st – Mendocino Film Festival, CA – http://www.mendocinofilmfestival.org/

    Please contact us for more information.

    56 minutes

  7. Yeah! How great for the EI people to hear your perspective. I really hope that someday I have the opportunity to speak to health care professionals or students about the whole “parenting a child with DS” experience. I bet they really learned ALOT from hearing you!

  8. Inspirerande, Kicki! Vilken tur de hade att just DU var där just den dagen.
    Kram till dig!

  9. Du ÄR bäst! Har vetat det länge. Puss

  10. Hey, that is funny! The calendar is still valid, although 2007 is over.
    I couldn’t hold a speech like that, and definitly not in another language.

  11. good for you! I can’t believe you were able to get up there and speak in front of a crowd with no advance notice! I wouldn’t have been able to do it!

  12. Jag är djupt imponerad!!! På tyska! Och vilket mod du har, som bara rätt upp och ner ställer dig där och lyckas förmedla så mycket viktig information.

    Jag blir alltid imponerad när jag besöker din blogg! Men den här gången……


  13. Hej Kicki, I am very proud of you!
    puss puss Booker

  14. Kicki, du får mig att gråta av stolthet när jag läser dina fantastiska tankar och funderingar kring att ha ett barn med DS. Jag är så stolt över att vara din vän. Du, din karl och din underbara son är en sann inspirationskälla för oss alla. Och att du dessutom håller föredrag på tyska- vilken tjej!!! Älskar er!

  15. You did so well! Thank you for the difference you will make in all the student’s future interactions!

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