My favorite moment from the Weekend America interview didn't actually make it into the broadcast. Reporter Michael May was asking Schuyler questions about how she communicated. She was giving some of her answers on her device, but she was also verbalizing a lot. I was there to help translate, as her words can be hard for the uninitiated to understand.
"Schuyler, how did you talk before you got your device?" he asked.
She thought about it for a few moments, trying to remember back that far. Finally she held up her hands.
"My hands!" she said, indicating that she was learning sign language before she got her Big Box of Words.
As she answered, a smile crept across her face. She then held up her feet and pointed to them, cracking herself up as she answered.
"But not my feet!"
That's actually a shame it didn't get included. Would have been a great illustration of how witty and funny so many of our non-verbal kids really are; they get dismissed a lot...as you know!
ReplyDeleteOur copy of the book finally appeared last Saturday. My mother-in-law finished it cover-to-cover over the weekend and raves about it -- "excellent writer," that kind of thing... I know she's influenced at least two others to buy and read and I'll be bringing it to the next SPED-PAC meeting for parents there to see it.
ReplyDeleteI thought you might get a kick out of how I read it... I started at the beginning for about three pages... Then impatiently skipped to the end... Read the Epilogue. Backed up a chapter and read through to the end again. Eyed the middle a bit. Then went back to my starting point, now that I was reassured about how it would go (as if I didn't know the ending anyway!) and read straight through to the end (again)... And once I really got into it properly, I stayed up until 2 AM this morning to finish. I just love reading the part where you find out about Schuyler's Box class... Where you go out on your own to find out about the PRC device... About going on the attack when they took away her voice in summer school... It's fabulous material -- you've written and crafted an excellent book that parents of non-standardized kids should ALL read for encouragement and inspiration. Bravo!
Congratulations on all the wonderful happenings :) Must go get my copy soon to support you!
ReplyDeleteJust found your blog and your story. The inspiration, spunk and spirit of your family will influence others more than you can possibly imagine. You have been through the fire but you did not disintegrate into ashes. You may smell a little smoky, but this is what makes you so believable and so compelling.
ReplyDeleteKeep telling your story - you're making the path more tolerable for someone out there.
Too adorable!
ReplyDeleteSoo cute! Have you seen the Schuyler cupcakes?
ReplyDeletehttp://cupcakestakethecake.blogspot.com/2008/02/schuyler-cupcakes.html
Stories like this about Schuyler make me feel more and more like she's going to have a bright future. She just kicks so much ass. :-)
ReplyDeleteSoo cute! Have you seen the Schuyler cupcakes?
ReplyDeleteYes, that photo was taken at my first book signing event. I believe I took that photo.
I love your little Schuyler 'scoops' - they put a smile on my face!
ReplyDeleteI am slowly making my way through the book (much to the angst of my husband) - I am enjoying every moment of it! The parallels to what we've experienced with Chris through the years are startling...the 'something is not quite right' feelings, frustrating doctor visits, the MRI experience, the 'birth to three' programs, IEP's, teaching TEACHERS how to teach your child, the 'specialists', discovering AAC, FINDING the RIGHT AAC...the list is endless and will continue to grow. And of course, the very striking neurological similarities to Chris - it seems impossible that there is anyone else out there like him, yet here is Schuyler with her 'vowel sound speech' and glowing character. You document it all so well, and the emotional piece of it is spot on.
Great job Rob ~ I know we only just 'met', but I'd say you've done your daughter and Julie proud and that you have earned 'Top Dad' honors through and through. Good, good work!
I'm not sure if I've commented here before or not, but I would have died laughing with what Schuyler said. I truly appreciate that kind of humor. (We recently had an "All Hands" meeting at work, and as we were trecking to the conference room I asked "but what about my feet?"... see....)
ReplyDeleteI haven't had a chance to pick up the book yet, but plan on it. Your whole family rocks!
Hope you'll be pleased to know that the Kinderhook Memorial Library has a copy of your book. As the requester, I got to read it first. It was as enjoyable as the blog/journal has been all these years. While I had been along for most of the ride (been reading since New Haven days) the book was still a good read. Congrats on a job well done.
ReplyDeleteChris in NY
I just finished the book! I read it in two sittings, on one day. Nicely, nicely done.
ReplyDeleteI just finished it. It was not too emotional to read - having already met Schuyler through blogging. I still cried a little, stomped my feet in anger, and cheered when she soared beyond the expectations of all, but especially of the teachers. You and Julie are a formidable duo! I hope many more parents of all children will find the courage to expect only the best for their children also.
ReplyDeleteI sat today and read your whole book. I LOVED IT!! I work as a School Social Worker and also have a child with special needs. I will be passing this on to parents at work, and also to many friends and family. She has such a spirit and what a sense of humor. Thanks for sharing your story!
ReplyDeleteOh my. Anne Lamott speaks at the same B&N in Austin the Wednesday after your Sunday appearance.
ReplyDeleteWhy, oh why couldn't either or both of you have been scheduled one short week later during my Spring Break?
Lovely moment!
ReplyDeleteI was so excited when I heard the interview on the radio! I was like, "Hey- I know that guy!". And my book arrived last week, all beautiful and shiny and real.
ReplyDeleteCongratulations, Rob - it's so exciting to see this all come about.
~Leah
my pink toes
Well said.
ReplyDelete