It’s a Beautiful Day

12 Dec

Here’s my beautiful girl:

Now we’re supposed to post two from the PosAutive YouTube group but there are over 160 that to be honest, I’ve enjoyed every single one of. What I want to do instead is talk about an email I got recently from someone I’d not talked with before. I know other members of the Hub have received similar mail. Its a good feeling to get mail like this and makes me feel like a difference is being made. All names and locations have been altered.

From my inbox:

You know, I have come a long way in my perception and understanding of having a member of the family who is autistic. And your website really spurred a lot of that shift forward. Prior to reading it for the first time, I held the same view of autism that most have – that the lack of outward expression – or different expression, anyway – indicated a lack of “sameness” on the inside. How wrong I was. I was explaining yesterday to my brother, who lives in ****** and rarely sees my kids due to distance, of how my view has changed. What I was telling him, in response to the typical question I get so often – “So …… how is Simon doing?” – is that he needn’t ask about Simon as if he has childhood leukemia. He is doing fine and will continue to do fine as long as we offer him the support he needs as a five-year old child. And as long as we continue to support him through each year. Nobody ever asks me about Kyle (Simon’s brother) in that same tone of voice. And they probably use that tone because that is the tone I used earlier in Simon’s childhood. After the Dx that is. I am now in the process of correcting people’s views of what it means to have an autistic child. And more, to give them examples of some of the little things I have learned that have helped Simon and I communicate so much more effectively.

Monday night, he brought me what is his current favorite book – Twas the Night Before Christmas. He handed it to me and made a noise indicating he wanted me to read it to him. I said “Do you want to read this book?” “No” was his reply. Puzzled, I said, “Do you want to play a game or do something else with Daddy?” “No, I want book” “Okay, so you do want to read this book – let’s go” “No, I don’t want to read this book”. Okay, this is typical – Simon and I are standing there semi-frowning at each other trying to achieve some understanding of why the other person is not “getting it”. He grabbed my hand and took me to the couch where I often read to him. We sat down and he put the book in my lap, then settled back for me to read it to him. I said again, “So you DO want to read the book”. His answer, “No, Daddy.” I thought for a moment, tried to put myself in his shoes so I could figure out what level of communication was misfiring here, and it dawned on me, “Simon, do you want ME to read the book to you?” “Yes, Daddy” was the reply.

This is a prime example of the distance I have covered since first being exposed to ND, and your blog in particular. I still look regularly at EOHarm stuff, though I no longer make any comments.

That’s pretty beautiful to me. A Dad and his child connecting.

What else has been beautiful this year? Esteé’s ‘Joy of Autism’ launch sounded pretty damn good:

The Launch of The Joy of Autism: Redefining Ability and Quality of Life last night was a dream.

Five autistic guests who spoke at the microphone, and a gallery full of people, willing to accept. Parents thankful and aware of our need to accept the joy our children bring us, despite the challenges. People untouched by autism approaching me who said “I didn’t understand autism, and now I understand a little more.”

And then, as I finished my speech which had no mention of the following words, Jonathan Lerman yelled: “SELF ESTEEM!”

Self esteem. Trust an autistic person to refine down to the absolute core essence what neurodiversity, the Hub, my video of Megan, all the video’s in the PosAutive YouTube group and the idea of opposing and defeating autism related quackery are all about. Self esteem.

But it didn’t stop there. Kristina Chew and Jim Fisher launched AUTISM AND ADVOCACY: A CONFERENCE OF WITNESS AND HOPE in which Kassi was a speaker.

Another attendee of that conference told me of an event xe witnessed at that conference which spoke to xem.

Kassiane asked everyone not to be so loud with their clapping. It was a wonderful thing to see a couple of hundred people switch from clapping to just waving their hands after each speaker. Anyway I started to watch Kassiane more closely and was amazed at the sensitivity her hearing. In New York there are always police cars and fire engines going someplace. She would cover her ears long before I would hear anything. After a few moments I would then hear the police or fire equipment but just barely because we were inside. On my way home that night I closed my eyes in the airport and just listened, the noise was maddening. Things that I normally just tune out must make travel for her unbearable. So there I sat in a New York airport, eyes closed and beaming with pride for her. With her sensitive hearing coming through that airport had to be like you or I walking a firing range without ear plugs. Courage comes packaged in all forms.

And as Jim Fisher shows the ripples of someone speaking who is qualified by experience spread far and wide.

The conference featured a memorable presentation by autistic self-advocate Kassiane Alexandra Sibley. “I’m not broke and don’t need fixin, ‘” Ms. Sibley proclaimed. Kassiane had just finished asking how many among the audience (of over 200) considered themselves “broken.” A fairly healthy smattering of hands were raised. The speaker noted that none of the hands belonged to the very small cohort of audience members that a moment earlier had identified themselves (by another show of hands) as autistic persons. “I guess none of us are broken,” the speaker concluded. It was a stunning moment amid an electrifying performance by Ms. Sibley.

A few months ago I posted a blog entry simply entitled ‘Enough‘ in which I basically informed several ‘advocacy’ groups that I – we – had had enough. I would not suggest that post inspired Esteé or Kristina but it did (to me) mark a turning point of passive blog writing.

That turning point will continue to be explored in 2007. Advocacy and anti-quackery efforts will be redoubled. This is a beautiful time for self esteem.

6 Responses to “It’s a Beautiful Day”

  1. Ms. Clark December 13, 2006 at 00:32 #

    Self-esteem. Yes.

    Thank you for sharing the letter from the dad with the boy named Simon. It’s so sweet. Thanks for sharing the perspectives on Kassiane’s presentation, too.

    Me, I’m not broken, either, a little battered, but not broken. 🙂

    “Sometimes,” said the Skin Horse, for he was always truthful. “When you are Real you don’t mind being hurt.”

    “Does it happen all at once, like being wound up,” he asked, “or bit by bit?”

    “It doesn’t happen all at once,” said the Skin Horse. “You become. It takes a long time. That’s why it doesn’t happen often to people who break easily, or have sharp edges, or who have to be carefully kept. Generally, by the time you are Real, most of your hair has been loved off, and your eyes drop out and you get loose in the joints and very shabby. But these things don’t matter at all, because once you are Real you can’t be ugly, except to people who don’t understand.”

  2. kristina December 13, 2006 at 01:19 #

    Can’t say I’m so beautiful myself either—will leave that for Charlie and his cohort, and for spirited posts and posters as here.

  3. estee December 13, 2006 at 13:35 #

    Yes, indeed Kev. A good year.

    Joy to all!!

  4. Do'C December 15, 2006 at 15:34 #


    Thank you for sharing the video of your daughter. It is truly a pleasure to, in turn, share it with others.


  1. Autism Vox - December 13, 2006

    […] Kev’s daughter Megan singing a favorite song. […]

  2. Left Brain/Right Brain » Two autistic people speak - December 19, 2006

    […] I wrote recently about how positive a year it had been (or PosAutive if you prefer) and I’m pleased to say that its not over yet. Two autistic young adults added their voices to the autistic community. I want to write a little bit about both of them but before I do you should know that I am only going to name one of them. The other one’s identity I will not discuss. It’ll be clear why, I hope. […]

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