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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, February 11, 2008

 

Adam Speaks

I have no words yet for this...they are trivial. So I made a video instead:



PLEASE NOTE: This video was made with the knowledge of Adam, who has been very happy, by the way, at everyone's responses and congratulations. From hereonin, he will address HIS readers, directly.

39 Comments:

Blogger Niksmom said...

Oh, Estee, this moved me to tears. We are just beginning on the road to AAC for Nik and I know we are a ways off from anything like this, but this gives me such hope. And it reaffrms my absolute KNOWING that all of our nonverbal kids have so much to communicate to us.

Thank you for sharing this beautiful gift with us. You are right, any words you could have written ABOUT it would have been inadequate. (Nothing against your writing! You know what I mean, I hope.)

12:51 PM  
Anonymous Anonymous said...

Tears are streaming. Yay for Adam and you. Gotta go hug my boy now, over there playing computer games.

hands ... ocean ... calm. Just beautiful.

Marie

12:55 PM  
Blogger Navi said...

I'm speechless... and envious.

1:06 PM  
Blogger Estee Klar-Wolfond said...

Please don't feel the latter. I think that everyone can communicate but we just have to find out how. Adam could read from a very young age. He has been sopping up language under my nose. He has been using a computer for a while. I had him use Brother Label Makers, white boards and more.

I don't think he would have typed like this last year. I think he is just ready. Everyone is ready in different ways and different times.

1:09 PM  
Anonymous Anonymous said...

WOW...a boy of few spoken words leaves me speechless with his text.
What a gift of discovery!
David H.

1:17 PM  
Blogger abfh said...

Adam has quite an impressive vocabulary for a child his age! I wonder what the "raw rhetoric" might have been that bothered him? Some sort of autism stereotype, maybe?

One thing is for sure, he is very aware of what is going on around him. Thanks for sharing this video; it's lovely.

1:21 PM  
Blogger Dinah said...

the raw rhetoric leapt out at me too!
wow!!! this is the most perfectly joyful thing I can imagine

2:25 PM  
Blogger Suzanne said...

WOW Adam! Your mom is a keeper. So are YOU. Big smiles for you both.

2:39 PM  
Anonymous Ms. Clark said...

Amazing. Gave me chills. I still have chills. Rhetoric is raw, just floored me. I hope that there is feedback so the therapist understands what she might do to moderate her "rhetoric".

Hugs for both of you from me.

I guess Adam will have a blog soon? :-)

2:40 PM  
Blogger kristina said...

lovely and joy in every word!

3:45 PM  
Blogger MtMomma said...

That was the most beautiful video I have seen , it gave me chill bumps & made me teary eyed!!

I'm so happy for you all!! Your son sounds like a beautiful person. I'm so glad he has a way to share his wisdom and insight with you!!

5:36 PM  
Blogger Bev said...

Thank you both for allowing us to celebrate this joyous occasion with you. Yes, the "raw rhetoric" was striking, but I most enjoyed (and agreed with) the statement "Noise is poison."

6:38 PM  
Anonymous Rose said...

Oh, my Lord, how sweet as honey!!

How lucky you are to be born in this time, Adam. People are becoming so aware of the gifts of autism. You and Mom will open doors for many...I hope you understand what I'm trying to say.

The POWER of words...

Estee: I read a post today where a man talks about the necessity of realization that words have power.
http://www.nlconcepts.com/autism-hawthorne.htm
I will quote:


If you could tell parents one thing, what would it be?
There are two things I would want to tell parents. One is to be attentive to helping their children work from their strengths, using their own unique talents to meet life's challenges, rather than trying to constantly try to compensate for their weaknesses. Everyone has his own unique strengths and weaknesses, and autistic individuals are no different. If they can learn how to best use their unique strengths, then they will live happier lives for it.

The second thing is that parents should help their children learn the joy of communication, even if it is through sign language initially. One does not miss communication until one has experienced it first-hand, then one is hooked, and will exert whatever effort is necessary to communicate one's needs.


rosabw

8:07 PM  
Anonymous mayfly said...

Was Adam's communication facilitated in anyway? Were you touching him at all during his responses?
What skills has Adam shown before you got him his machine. Does he read? Does he have a collection of site words?

As the father of a non-verbal nearly 11 year old, I'd so dearly love to believe in your post has much as you do. I am bothered that Adam spells rhetoric correctly with the 'h', but has trouble with Daddy. Perhaps he so full of love for his father, he got carried away. I am bothered that he knows the meaning of oppressed and spells it correctly, but doesn't know the definition of luck. What child thinks they are oppressed.

Nearly all the peer reviewed literature on facilitated communications show that is the facilitator and not the child doing the communication; except in about 6 to 10% of the cases. I pray Adam is one of the few.

8:57 PM  
Blogger Ange said...

beautiful

9:33 PM  
Blogger Estee Klar-Wolfond said...

Hi Mayfly,

Adam has been reading since 9 months of age and is an independent typist of words. He is hyperlexic. Of conversation, I just got him a new keyboard which is lightweight and easy to use and I can type with him (ie; taking turns -- I write a line then he writes a line), and he's been using the computer for a very long time. I've also tried to give him a text-rich environment and we read a lot together, which we always have to do!!

I tried to show some pictures of how we fiddled with letters to make words when he was just over a year old (in this video) and him computing.

It is very important to me that he is independent, as he has the ability to do so. Not everyone with severe motor issues, however, can be independent. So that's another issue in terms of how to make AAC available to those individuals.

At times (since this is really new since I've been on a mission to converse with him by trying to ask the right questions), he can become distracted in the middle of a word or sentence. It is during these times I may squeeze his arm and tell him to look at the keyboard to keep going (he can get giggly and silly). It is very much an autistic trait to seem/be distracted, but it certainly doesn't mean he, like other autistic adults, are not paying attention to what's going on.

Looking away accounts for a lot of mispelling and then I ask him to look and try again, and when he is paying attention, he can really spell. He can slip a lot on the keyboard as this is his first foray into real sentences and conversation, which is why some people may need extra help to get control. I think of it like this: it's akin to Handwriting Without Tears or the Weighted Pencil that Adam and other kids have to use when making letters, I think. Adam has really benefitted from the weighted pencil approach and that program. As he is beginning to get better control, he is copying words from sight to paper. That weight or pressure can help keep him focussed and in control. Adam has struggled with motor planning issues for so long, and with OT and maturity, has really improved in all areas.

When he is motivated, he is motoring on his own on the keyboard. In fact, when he wrote the "rhetoric" line, that was totally independent (ie; i was not touching him in anyway). When he wrote the daddy line, the family was swarming him, so he was looking at them a lot. There it is. So, like everything we do, we don't do anything to the letter (excuse the pun). I do what I must to keep him going. When he is on, he is on by himself.

As for words, well, all I can say is that he reads a ton. He reads encyclopedias and everything and has been doing it forever. When he was less than two, he was on the computer on his own, wowing us with the exact spelling of things like alligator.

I am keeping a video diary so that I can one day show this sequence. I think it is very important for people to see and feel this for themselves and somehow to study this and the way autistic individuals absorb and appropriate language. He keeps surprising me with things like sucking his hands is like "ocean." I had to think about it for a while. Was it the salt or (since we go to the ocean a few times a year and he seems to love it), is it calming to him?

That is another part -- trying to ask the right question -- to frame it in a way that makes sense to him. But it's not all about questions or getting responses. In fact, the more questions, the less he wants to type. It's like he knows when people just want to find out if he knows anything, as opposed to taking him seriously as a person. No, this is about relaxing and conversing and that's when I get his most deliberate and best stuff.

As for the controversey over FC, I think it deserves more testing. I am a skeptic and advocate of real research, and I think that the tactics of providing whatever calmness or feedback one needs to communicate is something that we have to seriously consider. I think people should be tested to see if they or their facilitators are "speaking" too. I am personally curious to see if the "weighted pencil" theory has any bearing on the success of helping people to learn how to communicate using various tools. When Adam was learning to ride a bike, we had to physically move his legs so he could FEEL what it was like before he could rotate his legs by himself.

I would hate any autistic individual to be abused by anything that is built on a false foundation, and it's certainly the last thing I would want for my son. He deserves better than hocus pocus.

But I also believe there has not been enough research to be fair either way.

10:06 PM  
Blogger Estee Klar-Wolfond said...

P.S.

I received a lot of emails today aside from these comments congratulating Adam today. Thank you.

If you read my entire blog, you will see that these events have been a long time coming.

I read some of the comments to Adam and he smiled from ear to ear. Phil, I haven't yet read your comment previously about the Canadian provinces. I want to print that one out.

Someone mentioned a blog. Yes, he may start a blog someday soon. That would be a lot of fun, but not unless he gets some replies. I'll keep you posted on it.

10:48 PM  
Anonymous Anonymous said...

Amazing. I'm celebrating with you!

Thank you so much for posting this and also for your lengthly and interesting reply to Mayfly above.

karen in ca

12:31 AM  
Blogger Kev said...

:D

Well done Adam and thank you and Estee for sharing your progress.

7:17 AM  
Blogger S said...

I am one that emailed. I am still waiting for the weighted pencil and by the time the school finally gets it he probably won't need it... normal.

But what I wanted to address was the usage of Facilitated Communication.

I think FC is an excellent teaching tool if it isn't abused. My 6yr old is lazy, for lack of a better word, if he can get you to do it.. he will. WHICH, is a 6 yr old trait, VERY NORMAL for his age group. So, I push independance for every task.

I use FC when he gets confused on letter formation. W and S seem to be the most difficult. Just a firm hold on the wrist and he seems to breathe, process, find his control and finish the letter. But he is one that requires more sensory input than most.

He doesn't require FC when he uses his Writing with Symbols program. Like Adam he has excellent sight word volcabulary and spelling abilities. BUT, unlike Adam although he can rote spell and read, true comprehension comes using pictures - even words like Why, is, a, to... for some reason just a code seems to give them meaning. So they use the pictures to teach as well, they are teaching him to keyboard properly (OT is helping with this), and he does his journalling on W w/ S at school instead of writing it out. They are currently, using pictures of himself at activities, trying to see if he thinks in "I", instead of viewing himself as a Proper Noun. This takes a lot of planning by his EA... and I am grateful he has such a wonderful EA that is willing to do the prep for him. He does require re-direction if something away from the computer catches his attention.

So, IMO, getting started, FC helps, not hinders. But like all tools, needs to be used as needed, not improperly nor as a crutch.

S.

9:15 AM  
Blogger kyra said...

oh Estee! thank you so much for sharing this beautiful gift with us! it blew me away. i cried while reading and watching, in celebration, in awe, in gratitude. Adam is a poet. bless him and you.

9:53 AM  
Blogger Phoebe Gleeson said...

Beautiful. Just beautiful.

I linked to you, from my blog: http://feebeeglee.wordpress.com/2008/02/12/of-adam-language-and-communication/.

Thanks for sharing.

10:45 AM  
Anonymous Anonymous said...

Crying.

Beautiful. Wonderful. Congrats to you both.

11:06 AM  
Blogger Sharon said...

Adam you are so smart and adorable and it is lovely to read your words.

Thank you both for sharing this beautiful video.

6:19 AM  
Blogger LAA and Family said...

Wow Estee, and Wow Adam! Thank you for sharing this video. I am so glad that you have a way to share your thoughts with us! I too, am moved to tears!

5:26 PM  
Anonymous Anonymous said...

Wow. That is the most powerful video I have ever seen on line anywhere. Adam, you are an incredible kid. Your mom is a very lucky person.

8:33 AM  
Blogger Sassifrassilassi said...

This video is so amazing to me. I keep watching it. I have a 3 year old with autism. She has a lot of words, but doesn't use any other than labelling right now.

I'm wondering how old Adam is? I'm also wondering if he ever did any therapy of any kind? We are on the waiting list for IBI and she is just starting OT and speech here in Sudbury. I'm not a fan of IBI, but I want to see if it will help her.

Your son is doing so well and I hope my daughter will be where his is one day.

6:06 PM  
Blogger Estee Klar-Wolfond said...

Adam is not yet 6. He has had no ABA.

He has had LOTS of support, helping him with lots of things, but also following his lead, playing, and continued learning. OT we found VERY helpful for Adam's motor planning..would recommend such support.

Seek methods from all sources, and find tid bits from here and there THAT MAKE SENSE FOR YOUR OWN CHILD, and NOT JUST BECAUSE it's for specifically "an autistic child." I am not a behaviourist and don't support ABA, however, I have supported Adam since he was 19 months when we learned about the "label" called autism.

Find your way, read and learn a lot, but most of all, learn from your child and follow her lead. Don't worry about her "becoming like other kids" for such worry will only slow you both down. Instead, value the way SHE is discovering her world, even if it looks SO different, and keep reading, exposing, doing music, and playing your own idiosyncratic games (make them up by doing your child's favorite things). At three, you've GOT to make everything so much fun. You will worry, you will have doubt. But keep doing it.

6:31 PM  
Blogger Tom Smith said...

Excellent! I'm a long time autism and FC advocate. The skeptics are simply wrong about FC. It can be used widely without any negative consequences just following one simple rule...it's only valid to the two people communicating! Not only is FC the fastest way to independent typing, but it's the fastest way to the communication the auties need. That communication is essential to their well being and ahem, behavior.

7:14 PM  
Blogger farmwifetwo said...

Sassifrassilassi if your daughter has words she won't qualify for the program. And I too don't recommend it. We were in it for 8mths when my son was 4. Until he clawed his therapist and had 5 actions against others and my Family Support Worker helped me get them out of my house.

My happy child, was miserable. My happy child, has learned and is doing amazing in school and is still severe non-verbal. But that doesn't mean he can't read, write, spell, do math etc all at a Gr 1 level. He just turned 6 before Xmas.

I had hoped he'd forgotten. Then I hired a private Speech Path. She started last month, we had a long chat on ABA and what I would and would not allow in my home. She comes 30min every 2weeks. Wed was week 3. He finally trusts her. My kid, that loves everyone, finally trusts her. B/c sitting at the table reminded him of ABA, yet they play games for 30min as they work on skills... and the games are never taken away.. unlike ABA.

My SLP was sooo excited when she left... but it shouldn't be that way. He shouldn't be scared of T's in our home.

Contact your local Ont. Early Yrs Ctr and ask them about the Prov's early speech program - Tyke Talk here - and get your child into. Ask them for a Family Support worker to help you wade through the system. You are also entitled to paid OT as well.

Then when you get that sorted... it'll be time to wade through the school system :)

Best of luck. As Estee said, get her out and involved in the community. Read, colour, play games... who cares if it isn't "right"... "right" will come with understanding the world around them.

Sheri

8:49 PM  
Blogger farmwifetwo said...

Missed the "already in Speech and OT".. which means it's time for The Mommy to go to bed :)

Sheri

8:51 PM  
Blogger Sassifrassilassi said...

Thank you so much for this reply. This is exactly the way we have been with Ruby and as time goes by and we get to learn more about Ruby and ASD we are doing different things and following her lead. We just learned that she too can read. She can read about 25 to 30 words and we are amazed.

I'm using a magnadoodle and she loves to read the words I write.

She is not liking the OT so far, but I know she needs this. I don't really want the IBI because I don't want her to be a little robot. I want Ruby to be Ruby.

Thank you so much, I have subscribed to your blog and will be reading it daily. One day I want a program like the one youre using with Adam.

Oh and hi Adam!

9:24 PM  
Blogger aspiemom said...

Hi Adam! I loved reading your words! It is so nice to talk to your mommy and daddy and have them understand you. My youngest son is 7 years old-not too much older than you. Good job-I hope I can see more of your lovely words too!

Sincerely, Mrs D.
~~~~~~~~~~~~~~~~~~~~~~

I so loved mouth ocean calm - beautiful! What an age we live in!

12:00 AM  
Anonymous Anonymous said...

Why are you saying that your son has had no ABA? You have said in this blog that he had ABA early on, although you didn't like it.

11:59 AM  
Blogger Estee Klar-Wolfond said...

Anonymous,

You did not read my blog accurately. We abandoned our ABA program after a couple of months. It was the BEST and wisest choice we ever made. Please feel free to read my blog and my other articles in other publications and books more thoroughly.

4:58 PM  
Blogger Carly's mom said...

Estee, I am thrilled for you and your family that Adam is typing. Carly just turned 13 and started typing about 3 years ago and it was nowhere as consistent or prolific as it is now, so if decides to back of for a bit, don't get alarmed. He will come back to it even more advanced than where he left off (at least that was our experience).

We have gotten to know our daughter in a way we never thought possible. And she is telling us what she wants and we are respecting her and following her lead.

Some of you may not like this, but tells us she wants to be "normal" like her twin sister. She wants us to "fix my brain" of the impulsive things she does that make her very upset because she knows they are wrong to do (like spilling out bottles of shampoo, etc.)

However, she also says she would miss some things about herself as well, like how people react when they see her spelling for the first time...

This is obviously a very complicated issue and I think each family is in its own unique situation but I think we are all alike in that we want our kids to be the best they can be and as happy as possible. For me, there has been a certain path to get there and we are still on it...I will be waiting to read more of Adam's beautiful words... thank you.

1:18 PM  
Blogger S.L. said...

Awesome...
Breathtaking...
Beautiful...
Incredible...
Really cool!

Go Adam! I still have the chills. Bravo to you both--can't wait for Adam's blog in the future. :)

10:49 PM  
Blogger Navi said...

On facilitated communication... (I haven't read all the responses)

I agree more research is needed. I read somewhere that a huge hoax has turned people off of it.

In Tristan's old school, his language therapist was holding his hand in a pointing position trying to help him point, and he started choosing things. She also put things in his hands, much like she would have done with a deaf/blind child, and that helped him. She said she was a facilitated communication skeptic, but she realized she was using facilitated communication with my son...

I know he recently has pointed at things he wants with absolutely no prompting other than for me to pick him up so he's at the level of the item and ask him to choose (for example at a fountain soda pop dispenser), so he's apparently learned from it. If I'm not holding him, though, he'll just put his hand on it, or grab my hand and put my hand on it... so he still needs some degree of facilitation to actually point. He's recently started choosing pizza slices, instead of just grabbing one. I'm guessing it's because he noticed the rest of the family was choosy.

10:05 AM  
Anonymous Anonymous said...

Way to go! I am happy that you have found a way to communicate with Adam. I too, believe there is a way for all to communicate, one way or another. Thanks for your blog.
Many Blessings!

2:43 PM  

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