February 11, 2013

A Break from Passing

Today at Support for Special Needs:
"So Schuyler learns to pass, and I try to show her that she doesn't need to while at the same time helping her to construct this Potemkin village of outward normalcy as best as I can. It's complicated; I feel guilt when I assist her in building the mask, but I also sometimes wonder if by encouraging her to embrace her difference I'm not setting her on a path that, better or not, may very well contain more pain, more disappointment. Schuyler's own wishes are much clearer; she wants to be like everyone else. She all too frequently expresses the heartbreaking sentiment that she wants to talk like everyone else. When we do her homework or study for her tests, especially for the mainstream classes she attends, I can feel her frustration at not quite getting the things that she must be aware come so easily to her neurotypical classmates."


5 comments:

Unknown said...

That feeling of "among my own tribe" is what we're hoping diabetes camp provides our daughter this summer. Do they have camps for AAC users?

Rob Rummel-Hudson said...

They do, although they can be very expensive. This might finally be the summer we try to send her, though.

Unknown said...

Some diabetes camps are nearly free because they are funded by the Lion's ....maybe the Lion's do AAC camps? The ADA camp we are going to has "scholarship applications." And I for one would contribute to a Send-Schuyler-to-camp fund!

Hope Anne said...

Thank you again for all you and Schuyler are willing to share for those of us who are "newbies" coming along. Our daughter is 8 and completely non-verbal, but she has only been with us since the end of June 2011, when we added her to our family through adoption. I knew parenting a non-verbal child would be hard but since we had to little medical info available for her prior to her arrival here in the USA, no one really knew what was going on. There is some slight hope that she might still develop useable speech some day but in the meantime we are crippling along. Your book was the first thing to give me a "safe haven" where I felt like I could relate to much of what you shared.

ea33568e-78b4-11e2-ac8c-000bcdcb2996 said...

Hi, my name is Rochelle and I am 16yrs old. For English class we have to do a project on an autobiography, biography, or memoir, and I chose your book. I had fully anticipated doing my project on Soul Surfer, a book I've read many times and loved. But at the last minute something caused me to reach for this book, Schulyler's Monster, placed on a random shelf, hidden in-between the countless # of non-fiction books in the highschool library. I don't know why, I had no idea what it was about. I've just gotten to chapter 18 and am sincerely moved. I am prodestant, a Christian, a "believer" but I fully understand your frustration with God. I'm not sure what you think of him now but I hope you are giving him a chance. And as untrue and crappy as it sounds, He truly does not give us anything more than we can handle, which means you are a very strong man. I wanted you to know that your story has touched my life and will the touch the 17 students and 1 teacher I'll be presenting it to. I've seen YouTube videos and schuyler is very pretty and bright. I'll be praying for you, not because I pitty you, or think you need any help (because your probably doing very well), but because your here, Schuyler is here, and I'm here and I want to. Thank you for sharing your story.