Wednesday, May 10, 2006

don't fence me in

It has been brought to my attention that by my speaking in terms of "recovery" and "autism," it is unacceptable for me to also embrace acceptance.

I have been puzzled by this "either/or" conundrum. Why must the two be mutually exclusive?

I don't think that they are. As a thinking person, my views on autism and what it means to me and my family are engaged in an ongoing process. An evolution of sorts, expanding on some fronts and narrowing on others.

Three years ago when autism first came crashing into my lexicon, I though in terms of "cure." Things were very difficult around here. I was scared and embarking on a journey in completely unfamiliar territory to me. My children seemed like foreign creatures. We had no relationship beyond a very rudimentay one of a mother providing the basic needs for her helpless offspring. I was at an utter loss when it came to communicating to them or understanding what they were trying to tell me. It was a terrifying era in our family, for everyone. Having no experience with anything I was dealing with on a daily basis and having had no exposure to anyone who had, I longed to take what I had and make it fit into the landscape that I was familiar with and I used the only tongue I knew when describing what we were trying to achieve.


As I was exposed to a few ideas and approaches, I added those to my vocabulary and roladex of experiences. Those first exposures were to therapists and professionals who were not parents or people living with ASD. So my earliest understandings and expressions about our day to day experiences adopted that vocabulary.

*sensory intergration
*target skills

We began to make progress. There began to be communication between my children and myself. I became less afraid and unsure of my abilities to love and protect and parent these girls. My base of interraction expanded futher. We added more words.


As we continued, I began to actually get to know these wonderful and amazing children of mine. I was almost embarrassed by how much they delighted me. Such unique little minds...I was often in awe. Learning what they really liked to do, and then going out and doing stuff. Sharing experiences as a family. And the evolution continued.


We bandied that word about. Tried it on for size. Trotting it out and feeling brave we made our first inroads into the typical world around us. We have had some successes.

And some rebuffs.

And now we are about to really step out into the world with kindergarten and other parts unknown. My interests and need to seek knowledge and understanding is expanding again.


So, what does this mean? Have I betrayed my former self because I no longer search for a cause or a cure? By accepting the "quirks" of our family and the girls (and myself) do I no longer dare use the word recovery? Does this mean I must now embrace "autism as culture?"

I don't think so. I don't think claiming recovery is mutually exclusive from embracing differences in neurological wiring. Recovery to me is a dynamic word, implying an ongoing, hopefully progressive process that is not yet finished and never will be until we're pushing up daisies. We are all recovering in this house. What we thought we were going to have, how we thought it would be, how it was all going to work out in the end, that's gone. And we are recovering from that. We are all still works in progress. I have not perfected communicating with my girls. We still struggle and spend a part of each day frustrated and at a loss as to what to do next. We are recovering from the imprint that fear made on our hearts and minds. We are recovering from being narrow and stiff-necked about what recovery means to us. Everyday I find myself more pliant and supple within our circumstances. My mental muscles are less taut and that enables me to stretch and reach and discover new strength that I didn't know I had or even needed.

I have no intention of creating a manifesto or mission statement defining in black and white terms my relationship to autism. I don't want to be bound by one perspective. I intend to keep on moving. I will not return to a static and limited vocabulary and repetroire of experience just because it is comfortable and familiar. People have been trying to put me in a tidy little box and define who I am my whole life and I just can't live like that. It is suffocating and I refuse to do that to my girls. They've just gotten their wings. I am not going to clip them now. That would be cruel and that would be hypocritical. That would be regression. And regression is one term I will refuse to consider.

I am absolute about that.

When I was a child, I talked like a child, I thought like a child, I reasoned like a child. When I became a man, I put childish ways behind me.
1 Corinthians 13:11

Forget the former things; do not dwell on the past.
See, I am doing a new thing! Now it springs up; do you not perceive it? I am making a way in the desert and streams in the wasteland.
Isaiah 43:18-19


Blogger Trisha said...

Oh, Susan! I think this is so eloqeuntly written. I really appreciate the opportunity for the glimpse into your life.

You are the strongest woman I know and I applaud you for everything you have done and continue to do for your girls. Anyone who chastises you for that should take a long, hard look in the mirror.

3:51:00 PM  
Blogger Joseph said...

FWIW, I don't discount that "recovery" happens in autism. Autistic kids develop, and you can't really put limits on how much and in what direction they can develop. Perhaps there's a semantics issue on whether it should be called "recovery". My own dad did not speak until he was 4, and I have other reasons to believe he would've been called autistic by today's standards. Today he's what people would call "recovered".

9:12:00 PM  
Anonymous Anonymous said...

I agree Joseph. It certainly sounds like speech came easily once her child starting speaking. I have met several children on the spectrum like this. Therapy seemed to work much "better" because there wasn't severe dyspraxia and language issues.

6:26:00 PM  
Blogger supposedly susan said...

Perhaps there's a semantics issue on whether it should be called "recovery"

I am a lover of precision in languange. Is there a more accurate word on the books?
recovery ~ the act, process or instance of recovering:
I agree it's not perfect, but it's all I have.
Thank you for your comment, Joeseph.

7:26:00 AM  
Blogger Lacey Anne said...

Very well said, Susan. Anyone who disagrees with you shows their own ingnorance. Believe it or not, you are the very imbodiment of "flexible." Your girls have grown and flourished because of you. You should be very proud of your accomplishments. Even I'm proud of your little darlings!

8:35:00 AM  

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