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"I Have A Voice"

posted Friday August 29th, 2008

OK, this isn’t my typical fare, I’ll admit. Someday I’ll get up the guts to post “Pink Slip”. (Curious? it’s on YouTube.) Tonight, here is something I found on a blog run by a woman named Jessica. Her daughter, Sophia, is a little older than my Sophie, and Jessica had some sage advice (you can see it in the comments on my micro-chip post) she left on Girl in a Party Hat. I checked out her blog, which is lovely, and watched this.

(If you’re looking for a good cry…..)

http://www.youtube.com/watch?v=t_0K-gPlyb0

(I watched it a second time with Annabelle. One of the people featured appears to be an adult.

“Oh, you can have Down syndrome when you’re an adult?” she asked.

“Yes.”

“So Sophie will always have problems?”

“Well, yes, some.”

“Oh. I’m glad I don’t have Down syndrome. I speak PERFECTLY.”

Pause.

“But I think Sophie likes Down syndrome.”

“Why do you think that?”

“Because she has fun.”)

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4 Responses to “"I Have A Voice"”

  1. The sweet opening of “i have a voice “, albeit with loving intent, is partly balderdash.

    My adult son with Down’s does indeed manifest conditional loving, a coping style thoroughly learned from family dysfunction.

    He has learned to align with one parent to avoid the pain of passive aggression. He rarely chooses to tag along with the other parent to visit his other relatives. Thus, he has closed the door on half of his extended family.

    Granted, the former example is largely due to strong external influence. But since high school, he has refused to have anything to do with other MR individuals. Likewise, normal young adults do not include him. Thus, he is often alone.

    He was a docile child, never prone to running away.

    Perhaps people with Down’s share a few superficial similarities, but some folks are too hasty to categorize Down’s people like a breed, like one might characterize Chihuahuas or Pit Bulls.

  2. i love you, robert polk. you should know you have a following among the readers of this blog! and me, first and foremost. i need to send you a separate email — i will, soon — but wanted to say that. you are the godfather of girl in a party hat!

  3. R POLK – I agree SO much! My almost-14 year old daughter (who has DS). She is DEFINATELY not an unconditional lover.

    I feel like laughing (or “murder”) when Ricki throws a tantrum somewhere, and someone comes up and says, “Oh, but these children are SO Loving and SO Wonderful” (Always makes me wonder if they think I’m disowning her when I’m just giving her a bit of my mind!)

    But the end of the video, with all the adjectives is tremendous.

  4. I’m addicted to your blog, Amy. I love reading it. I love reading about Sophie and Annabelle.

    I’m not close to anyone with DS but I know someone with DS and I love him dearly. My boyfriend (23) works with mentally disabled people (excuse the wording, I don’t know how else to put it.) and one of the residents there has DS. His name is Paul. Though he can get a bit rowdy sometimes he’s still very very fun to be around.

    I’m only 17 (18 in April, yay~) but I can say that I am.. proud? Is that the word? We’ll use it. I am proud of you. I am proud that you chose to raise a little girl with DS and I can, well I want to say, that I think you’re happier than a parent with a child who doesn’t have DS. Yes, there are problems and yes, there are always questions and things you go back and forth on.. but you have a unique child. A BEAUTIFUL child. A beautiful girl.. who I have fallen in love with.

    Who else in this world can say they have a little girl who is as cute, cunning, and clever as Sophie? No one.

    Thank you for making this blog and continuing to update, but most of all thank you for helping to open my eyes.

    — Lisa

    Oh, I found this on youtube and I thought you’d like it: http://www.youtube.com/watch?v=-_-P4t2jR1g&feature=related

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My Heart Can't Even Believe It: A Story of Science, Love, and Down Syndrome is available from Amazon and 
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