Nothing To Prove And All The Time In The World To Prove It

  For National Down Syndrome Awareness Month there are all kinds of blogs and essays written FAR better than anything you’ll ever see here, spouting the accomplishments and feats of people of all ages who have Down syndrome (the extra chromosome on the 21st gene that’s also called Trisomy 21).  I LOVE that people are bringing attention to people who have DS who are out there just livin’ life: going surfing (on my facebook wall today), riding horses, swimming SUPER crazy long distances (Karen Gaffney of Portland, OR), teaching a Kindermusik class, working independently at jobs out in the community, riding city buses to and from their homes, etc… 

   While I completely applaud and am 100% behind the efforts to bring attention to the accomplishments of those who have DS, I think we can sometimes portray an image to the outside world of “Look what my son/daughter is doing:  he’s (she) is ______________, he’s in “such and such”activity- isn’t he great?  He has VALUE!!”  Don’t get me wrong, I do NOT in any way fault ANY parent for tauting their child’s accomplishments and I completely understand why the parent of a child who just a generation ago would have been institutionlized from BIRTH would want the entire WORLD to know what all their kids can do despite the challenges of having an extra chromosome.  My concern is that sometimes we as parents of kids with disabilities are out there CONSTANTLY (and very subconsiously in most cases) proving that our child has value as a human being because she’s in a hip-hop dance class, or he sings in the choir, or he’s in a play at school, or he “reads at grade level” as if to say, “See, he’s not that different…..he’s in the cool club, even though he has a disability”. 

   Much of the examinations we feel from the outside world come from those who used to be, or should be the closest to us; friends, our own brothers and sisters, our parents and extended family members, rabbis and pastors, etc….  Last year my best friend was at a wedding reception and was seated at a table with some former friends.  I say “former” because my friend and her family just don’t have a lot in common with these people anymore, but before my friend’s daughter was born their families did lots of things with them (my friendn’s daughter is a year younger than Hayden).  These are folks who are pretty bound up in the world’s game of “what will “so and so think?”” and they act and talk accordingly.  At some point during the evening as the families were talking about their kids and just doing the normal chit-chat-thing, the woman turned to my friend and said, “Well can Claire READ?” (names have been changed to protect the innocent from being associated with this blog), as if to imply, “Can she at least do THAT?”.  Now, in my friend’s case Claire can read, but not because her mother’s been grilling her for years or shoving phonics down her throat since she was two (that’s more my striving style than my BFF’s developmentally appropriate method).  What really, really struck me about that whole exchange was, well what if Claire COULDN’T read?  Would she be pitied?  Would my friend and her family be judged because of it?  Would Claire still have value as a human being or did Claire just go up a notch in the eyes of their former pals because she CAN read?   To my friend’s credit she said “yes”, but in such a way that the conversation wasn’t pursued.  My friend can not STAND striving and can see right through the schemes (it’s no small miracle that we’re friends and I’m the beneficiary of some serious wisdom from this woman).  I just see a lot of striving in the disability community, as if we have to prove to the world that our kids DESERVE to live.  And thanks to Roe v. Wade and the fact that over 90% of babies identified (correctly or incorrectly) in-utero as having Trisomy 21 are aborted, maybe we DO have a lot to prove.

  So today I take a few minutes to celebrate Hayden for being Hayden.  He’s 13 years old and he LIVES for music.  Right now he’s TOTALLY into the TV show “Yo Gabba Gabba”, although his first love, Signing Time, is a very close second.  He reads and recognizes some words and his current favorite books are Dr. Seuss’s “Hop On Pop” and “The Dr. Seuss Songbook” (both from Jeff’s and my childhood collections).  He can spend HOURS in his room reading his sign language cards.  He loves to play on his sister’s old violin.  He’s learning to catch a ball and he rides his bike (with training wheels) under diress.  Within weeks of moving to L.A. he heard Vin Scully calling a Dodger’s game on TV and he’s been a Dodger fan ever since.  We have pictures of him taking batting practice, ala Manny Ramirez, in the reflection of our siding glass door and it’s pure joy.  He reads many words, signs even more, and he can hear and understand a staggering amount considering he has severe to profound hearing loss.  Most of the time when we go through our reading words he signs what I say, even if he doesn’t “read” the word for himself”  He is CONSTANTLY learning, but often times doesn’t want you to know what HE knows.  It’s all a game to keep Mom and Dad guessing!

  Hayden, thanks for being you!  Thank you for teaching ME that a person needs to be treasured and honored because God made you special and He loves you very much!!  Everyday you teach me that you have nothing to prove and that I’m the one with the unwieldly baggage.

1 Comment

  1. Gigi – you won a Caterpillar's Math Games on my blog me w/ your addybubbetta at hotmail dot comCongrats!

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