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Location: Toronto, Ontario, Canada

Writer/Curator/Founder of The Autism Acceptance Project. Contributing Author to Between Interruptions: Thirty Women Tell the Truth About Motherhood, and Concepts of Normality by Wendy Lawson, and soon to be published Gravity Pulls You In. Writing my own book. Lecturer on autism and the media and parenting. Current graduate student Critical Disability Studies and most importantly, mother of Adam -- a new and emerging writer.

“There is no hope unmingled with fear, and no fear unmingled with hope.” -- Baruch Spinoza

Monday, March 17, 2008

 

In Adam's Words...

Adam approved the following excerpts:

21 Comments:

Blogger kyra said...

i just love learning about adam from adam. thank you for sharing.

4:21 PM  
Anonymous leila said...

Absolutely amazing... Is he reading books for adults yet? His vocabulary is so sophisticated.

My autistic son is 4 years old and he communicates mostly through talking, even though he has trouble forming sentences spontaneously. He can type, but he never uses the computer to communicate thoughts, he just likes to play and type things like colors and names of his favorite characters.

It's so hard to know how much my son understands; I never know if I'm underestimating him or if I'm making it too hard for him to understand. Sometimes when I try to have a "serious" talk with him, he says "The End", to make me stop talking that way. : ) It cracks him up and I end up laughing too.

5:04 PM  
Blogger Estee Klar-Wolfond said...

That IS funny. Adam says the same thing to me when he wants me to stop talking!! His is an abrupt and melodic way of saying it like the way I have sort of sing-songed it at the end of story books.

Adult books? Yes. From the time he was 11 months old did I notice his love of ALL books. He read Henry VIII and Gotham from the bookshelf. He has his nose poked in all kinds of books, but to some people, it would appear that he's just looking. He puts them, for instance, on a couch or the end of his bed and jumps up and down while he reads them, sort of holding on to the edge of the bed, leaning close down to the pages.

Of course, his favourite is also the alpahabet. Even today, I could give him a baby alphabet book and it would soothe him when he needs to be soothed. I often take those on the airplanes, but he is much more interested in reading stories these days.

I've also noticed an increase in his own "pretend play," since he has also been interested in more stories.

5:21 PM  
OpenID dancingmom said...

Beautiful. Thanks to you and Adam for sharing.

6:03 PM  
Anonymous leila said...

Estée, exactly, the "The End" is said in a sing-songed voice, and a big smile on his face because it's his way of joking with me. I have the impression that my son gets annoyed if I'm on the "serious Mommy mode", by my tone of voice. He'd rather listen to me speaking in the "fun mode". He is really sensitive to changes in tone of voice - it's the only sensory issue that really gets him, because he doesn't care about loud sounds for instance.

Now, I hope you don't mind my question. But I was wondering if you're trying to come up with strategies to make him feel less "opposed" by the demands of our chattering society! Today when I dropped my son off at preschool he looked really patient and not turning away, but I could tell he was cringing while this girl kept blabbing at him about leprechauns... Poor kid had not idea what she was talking about and tried to focus on his alphabet toy!

8:47 PM  
Blogger Phil Schwarz said...

When Jeremy (who is 17 now) was 6, he discovered that he liked planets and stars too. He still does! He and Adam should type to each other sometime.

9:27 PM  
Blogger Phoebe Gleeson said...

ah! Adam is so so much like my Bede! Bede used to read our Norton literature anthologies, around age 2 to 3. I think he liked the heft of the tome, the onionskin paper, the sound of the pages. I knew he was reading them, but nobody else believed me for a year or so. I know also that he was reading before that, he started around 18 months. He handed me blocks with letters on them and said each sound, then didn't speak again for a year. his speech is still very limited at age 5, but he types CONSTANTLY.

We too didn't pursue any therapies. nothing felt like it would help him be him. we supported him, always ready to rethink our position if it seemed that an external method would benefit him. we will probably try occupational therapy this year, in fact.

thank you Adam for letting us read your words. if Bede is ever in your part of the world, perhaps we can all meet.

9:28 PM  
Blogger kristina said...

lovely words, lovely sounds, lovely boy.

10:46 PM  
Blogger Jen said...

I find these videos so incredibly moving and encouraging- thanks to you and Adam for posting them.

4:18 AM  
Blogger abfh said...

Hi Adam. Thanks for sharing about yourself.

If you like saying the word "banana," I bet you would like the Apples and Bananas song by Raffi.

Here's a version of the song by Keith Urban on YouTube:

http://www.youtube.com/watch?v=rVw_z6jRFVU

8:39 AM  
Anonymous Anonymous said...

Your blog has been an incredible source of insight for me. Thank you for your years of work on it. Please thank your son for me. I appreciate his allowing us to read his thoughts.

Might saying things you don't mean (e.g. banana) be a form of meditation. Like monks chanting ohm to center and control their thoughts? I sometimes say nonsensical without meaning to things when my thoughts overwhelm me. (My wife make fun of me for it.)

Might the pool not only be a physical thing that he enjoys but also a metaphor for thought itself. If he finds the pool to naturally symbolize a large basin of thoughts, he probably assumes you do too. The same way we assume everyone thinks of red as a hot color and blue as a cold one.

Or maybe he just really likes the pool. I certainly do.

Thanks again.

-Adrian
adrian at x hyphen omega dot com

9:10 AM  
Anonymous Amanda said...

Wow, I envy Adam that he was born when enough was known about autism that his parents didn't end up (as mine did) flailing around for a bit and then doing what they could to force speech (on the advice of others). I think I would have learned language-as-communication a lot earlier if allowed to wait, like Adam, until I was ready to understand what was happening. It is so cool that he has this.

10:39 AM  
Anonymous Amanda said...

Wow, I envy Adam that he was born when enough was known about autism that his parents didn't end up (as mine did) flailing around for a bit and then doing what they could to force speech (on the advice of others). I think I would have learned language-as-communication a lot earlier if allowed to wait, like Adam, until I was ready to understand what was happening. It is so cool that he has this.

10:39 AM  
Blogger Estee Klar-Wolfond said...

Amanda,

I agree. There is not a day that goes by that I don't thank heavens for the technology that is out there and that we live in a world where there is so much WRITING everywhere. It forces, I think kids to become reading-literate a lot earlier, I think. As for many autistic people like Adam, who can decode written language as a baby can decode oral language, it has been a fortunate environment.

HOWEVER, we have LOTS of work to do to educate ourselves and educators about the value of this kind of communication (or PECS, or other kinds of AAC devices) and to modify the our expectations for what makes an "appropriate" response and as well, adapt the tasks so that our kids can answer in a way that is easier for them to do so. Still, Adam is expected to do what other kids do the WAY that they do it and the balance is still way out of whack. It's even hard to get his aides to use devices with him successfully -- it seems the less "convenient" it is for them, the less effort goes into accommodating him. And that's it, isn't it? It's about whose it really hard for? Inconvenient for? I find I have to struggle to get others to think about adapting tasks so that he can respond. And for kids with more severe motor planning and communication issues, this is even more important. I feel that segregated special schools have more to do with convenience for the teachers rather than REALLY including all people and believing they can learn.

11:15 AM  
Blogger Estee Klar-Wolfond said...

Leila,

I hope I sort-of answered your question in my response to Amanda. I am not exactly sure of what "opponents" meant for him that day. I was told he seemed happy that day. So, I hate to make assumptions.

I find it really difficult and the only way is to work every day with his aides and teachers and every day it is an uphill climb. I am not convinced that with all the faith and good intentions, that people still really understand Adam and his abilities (perhaps I do not, either), and that time will truly reveal more for them, which in some ways makes me sad. We are so inundated with how to do things a certain way, that this takes time -- this being creative to modify lesson plans, worksheets, response expectations and tools for the means TO respond. Further, I wonder, reading Adam's idiosyncratic method of "talking" that he thinks in more metaphorical terms. It's hard for me to be certain as it is still very early.

All I can do, living in the world we do, is WHAT I do, I think everyday. In our daily lives, here on my blog in my writing. It all helps me to think things through and it's the only way I know how.

11:21 AM  
Blogger Estee Klar-Wolfond said...

P.S. to my last paragraph above -- maybe one day Adam can forgive me.

11:22 AM  
Blogger Estee Klar-Wolfond said...

Phil,

I am having Adam write his first emails now to family members. I think you should send a photo of Jeremy to Adam and start that way??

11:23 AM  
Anonymous leila said...

Estée, I noticed that other kids that communicate mainly through writing (e.g. DJ Savarese, Tito) also tend to speak metaphorically a lot... They are thinking outside the box and creating their own similes/images. If I was studying Linguistics I'd be very interested to explore this new avenue in autistic language...

12:49 PM  
Blogger Estee Klar-Wolfond said...

Leila,
Yes, I understand Ralph Savarese and Kristina Chew also write about it.

1:22 PM  
Anonymous Amanda said...

Extremely unusual metaphorical language usage, even out loud, used to be one of the possible language-related criteria for autism in the DSM.

That was before it became "known" that autistic people "never" understand metaphors. And that not being able to understand something means not being able to use it. Neither of which are fully true.

11:24 AM  
Blogger Linda said...

Wow! thanks for sharing, it's so amazing!

1:18 PM  

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