Tuesday, December 4, 2012

Autism Poetry

It is starting to be noticed that non-verbal autistic people are writing books. There is mine, out for one month, and a few others by teenagers. Why is that the books are written by teenagers? I think it is because we are the from the first generation of autistic people to be taught typing.

I have a good friend, Sydney Edmond, who wrote a book of poems, The Purple Tree, four years ago. Like me, she studied with Soma and was released from her solitude. Like me she has a mom who is trying to give her a fully normal experience in life. But unlike me, she is a poet. I wanted to introduce you to another autistic writer, but with a totally different voice and style. Autistic people are as different from  from each other as anyone else.

Here is a taste of Syd's lyrical poetry.

The Ocean in Winter

As I linger on a thought
looking out to sea
I wonder if a little bit
the sea remembers me.

We wallowed in the summer,
We walked in spring and fall,
Winter's here, and I fear,
It knows me not at all.

It wails upon the shore,
eating up the sand,
angry, loud, and thrashing,
making it's demand.

Teaming waves will tear at you,
some will tear you down,
laughing at your thrashing
until you're surely drowned.

Is this the sea who played with me
beneath a sky of blue;
that tickled at my toes
and lapped my ankles, too?

What is it makes it happen?
I want to understand.
Want my sea that sings to me
to come and take my hand.

And so I'll wait as patient
as the birds up in the sky
for warm  sunny days,
and a sea that plays,
to return.

6 comments:

  1. Hi Ido:

    Love your blog and will be buying your book this week. Thanks so much for sharing your experiences. I am the mom of two boys with autism. My 18 year old is verbal and can read but struggles to put his thoughts into language and to comprehend what he reads. My 6 year old sounds alot like you-very bright but non-verbal with alot of motor planning issues. We homeschool both our boys using a developmental approach called RDI. It's been very successful in helping them learn to regulate their behavior and in just improving their thinking in general. But the motor planning problem is a whole different mountain to climb. I'm wondering if you would mind answering a few questions for me? First, do you think it's too soon to start teaching my youngest how to read with a letter board? Not sure I'd be successful if I tried because he has alot of trouble getting his hands and eyes to work together . . . Also, we started him on a modified PECS system (flat pictures don't work well for him because they require good visual discrimination) so we use "symbol items" that have texture. For instance, he gives us a poker chip with a rough surface when he wants his tramp. So, he is starting to understand symbols. I'm wondering if sand paper letters would work? One other question . . . did you enjoy listening to someone read to you. I read books to my little guy and sometimes he appears to pay attention. Other times he runs around or leaves the room. I know that outside behavior is no indication of his actual understanding, so I don't know if he enjoys the stories or not. Again, thank so much for sharing your experiences and insights. It helps parents like me and our kids more than you can know!

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  2. Hi Teresa,
    This is from Ido's mom on his behalf. Ido worked with Soma Mukhopadhyay who helped him learn how to type. She is based in Austin, Texas. For those who live far away, she has "camps" where kids work with her every day for 5 days. We did that and it was really helpful. Her website is www.halo-soma.org. If you can't travel there, she has recently published a book describing her methods "Understanding Autism through Rapid Prompting Method" http://www.amazon.com/Understanding-Autism-through-Prompting-Method/dp/1432729284/ref=pd_sim_sbs_b_6 that may be helpful to you in teaching letter board and typing. Pecs was not useful for us. Ido craved fuller communication.
    Once we learned that Ido understood everything, when he was seven, we provided him with age appropriate books and learning. Even if your son moves around, if he stays in the room where you are reading, he is still listening. The hardest things for our kids to do is to control their own bodies.
    Thanks for getting Ido's book. I think it will answer many of your questions. Best of luck!

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    1. Reading Ido's book right now. Amazing. Thank you Ido-you are helping me to understand my 6 year old who has severe apraxia so much better. And Tracy, your intro really moved me. My 18 year old was in a center based ABA program for 12 years. We actually founded the school and I withdrew my son when I became totally disgusted by the methodology and the rigidity of the practitioners. I found that it took some years to rebuild trust with him ( ABA has a way of ruining relationships between parents and kids). Anyway, I have a question for you and Ido. My older son is verbal (he can talk but doesn't communicate much). He can also read and write. But every time I try to get him to write or type to communicate, he's been so resistant that I let it go ( while he can talk, it's difficult for him). He fights it tooth and nail. Why did Ido "fight" soma when she first started teaching him? Is there anything either of you can suggest that may help me overcome his resistance in a gentle way? Also, and I hate to ask this, but is there any way that I can privately message you one more question? It has to do with apraxia and what I'd classify as a self help skill.. Thanks again to you both for helping people to see autism in a different light. It's a tough battle because a lot of people now have a vested interest in maintaining the status quo (which around here is ABA, ABA, and more ABA).

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    2. Hi Teresa,
      Lots of non-verbal kids I know resist typing at first, and sometimes for quite a long time with certain people. It is a difficult skill for them. They are used to living in silence, often feel very anxious, particularly with certain people, and have trouble initially with the motor planning. It is a process. You can check out some strategies at www.halo-soma.org. She taught Ido how to type and use a letter board and has a book explaining her methods. Don't start with open-ended questions. Start with questions with answers you already know or by having your son spell out things he wants. "I want orange juice," for example, in order to get it. Most importantly (and difficult) is to try to keep calm when your child resists.
      Re a personal note, give me your email and we can write to you, or you can leave Ido a note on his facebook page idoinautismland.
      Best of luck,
      Tracy (Ido's mom)

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  3. I just tried to post a link to your blog on Facebook, and it was blocked as being "Spammy". You might want to contact them and get it unblocked. I can post links to your book on Amazon, but not to here. I'm a teacher of teachers, and I wanted to recommend your blog to some of my students.

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  4. Thanks. facebook has been giving us problems recently and no longer streams from the blog to facebook. We have been trying to fix it. Facebook does not make it easy..

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