Burst forth my heart

Burst forth my heart.

I have discovered that there is an institute in Syracuse, NY that trains people to use AAC.

I learned to type as a young child (8 years old, perhaps) and was typing fluently and to communicate by age 10.  My family was remarking over Thanksgiving about how I had “impeccable grammar” in second grade.  That’s just how I got put together, I suppose… impeccable grammar, built right in.

I did the fifth grade typing curriculum, meant to last a quarter of the year, in a few days.

Since I can remember, I’ve been a typer.

As I got into high school, my typing moved beyond school projects and IM conversations to include letters, thoughts, and feelings.  I would make friends over IM, then see them in person and flat out ignore them, unable to speak.  It was a joke, but it always kind of hurt.

It was about that time, in high school, that I began to dream of having friends who also typed instead of spoke.  I knew nothing of autism, AAC (alternative/augmentative communication) or FC (facilitated communication), but I had a dream.

My verbal ability began to fall apart more and more in college, and it was then that the amount I typed to communicate actually outweighed the amount I spoke.  I would email and IM from across the room with Leigh… and when things really got rough, she would actually facilitate my typing, sitting next to her on the couch.  Still didn’t know what FC was… but I was using it!

Upon a weeks-long loss of speech earlier this year and the reception of an iPod Touch, I began to type face to face with people when my speech went dry.  Still, the people I typed to always spoke back.  I hoped and dreamed of typing to someone who would type back to me…

At this point, I am able to carry on conversations about, well, autism, Elsie P, and Food Network statistics, but little more.  I’m always running around with my typing asking if I can read it out loud to Mom, Sister, and Therapist.  After all, “I have a cat,” while perhaps endearing, does little to express who I am and how I feel.

I saw Wretches and Jabberers not long ago and fell in love.  And then, having gotten an iTunes gift card and download of the film for my (early) birthday this year, upon watching it… well, I cried.  And cried, and cried. It’s not a sad movie!  But, I believe that because it is such an incredible validation of my voice and my being, that the emotion spilled forth.

Full circle, back to Syracuse.  I emailed them.  I am curious if they ever bring their AAC users together to type about life.

It’s just a dream, right?  Or is it?

My heart… burst forth my heart.




11 thoughts on “Burst forth my heart

  1. yay yay yay yay

    Best experiences of friendship
    are ones we build ourselves,
    without oversight of
    other people’s expectations.

    My best moments of friendship
    have been the ones that
    we each do
    our own thing in the room

    and on some good thought or idea
    imed each other from across
    the room and
    taken joy from that simpleness

    Of communicating in our langauge
    instead of “out loud”. typing
    words that
    don’t need voices

  2. I had no idea that anyone else did this! Now I know that it has a “name” and how to describe it to people. I often become non-verbal in stressful situations. I am only just now discovering the options for help (including “disability law” and rights to help that I never knew I could get). Thanks Lydia for posting! You’re always in my thoughts and prayers, you are heaven sent and I am so thankful for the help you have been to me.

    • Jeffrey, I also used AAC for years before I knew what it was called. I thought I was the only person in the world who typed to communicate like I did. Also, many doctors, etc will tell you that people with autism do not lose speech under stress– do not listen. I have encountered probably a dozen of us who have and do. Thank you for your prayers; that means a lot.

  3. So, so, so wonderful! I also type to people who speak to me & read a-loud things I’ve typed as a way to communicate.

    But your dream… I think it may be the dream of many other people. I didn’t recognize it as a dream within myself… until I read this post… yet I think it has always been there. Is okay if I share your dream too?

  4. I loved your post. Our son has used AAC and starting typing a few years back. He too longs to be around others that communicate the same way. We were fortunate enough to meet Bob Williams, another nonspeaker who is a wonderful person who happens to use AAC to communicate. Try to google him. He helped with the Americans with Disabilities Act and now works for the Social Security Administration. We have also met many folks through Syracuse University Institute on Communication and Inclusion. They have been a huge help in supporting our son Jacob to communicate at his best. The Whittier, CA group (wapadh.org) is amazing as well. I encourage everyone to see Wretches and Jabberers. As our friend Bob said, there is no community without communication.

    • Jeanne, I came into contact with a young man just about 10 miles away from me who uses AAC! We’re going to meet at a coffee shop and do some typing. I hope to go to Syracuse at some point, too… maybe I’ll see you and Jacob there! I will look up Bob Williams.

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