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Wednesday, January 2, 2013

#GBE2: Wish

I watched our older son this evening as he sat on the kitchen floor. His back was to me. He sat, there on the floor, a lone figure in the room with his legs crossed and his head slightly hunched.  Situated squarely in front of him was a favored vacuum.  Quietly, almost peacefully, he sat and studied that vacuum.





 I wondered what he was thinking.

Eleven years old and low verbal, he lives very much in his own world.  His motivations, his reactions, his dreams and his fears are but silent voices.

How I've always wished that I could hear those voices.  What mother wouldn't?

I remember the first desperate days after his diagnosis.  Angry and convinced that the man who diagnosed our then 2-year-old son didn't know what he was doing, my husband and I purchased a library of language DVDs.  Mercilessly, I strapped our son in his high chair, and I willed him to talk.

"Glasses," said the voice on the DVD.

I paused it.

"Say, 'Glasses'," I demanded of him.

Our son said nothing as my chest filled with emotion.  He was eating his morning bacon.  Usually, this was the perfect time to get his attention; but, he was tuning me out.

I took the bacon away.

"Glasses,"  I said once more.  "Say, 'Glasses,' "

Again, he said nothing.

Damn him! Why couldn't he understand how important this was!  We couldn't let that psychologist win! We simply must  prove him wrong!

"Glasses!" I demanded, tearing my glasses off of my own face as tears spilled from my eyes.  "Look! Glasses! Say, 'Glasses'!"

Nothing.

"Glasses!" I choked desperately through my sobs.

"Asses," he said.

I collapsed into a puddle of tears, relieved for winning the battle and much too frightened to admit that we actually might be entering a war.

Autism.

A decade after that morning in my home, I was watching our son, sitting in nearly the same spot where his high chair stood many years ago.

He had changed.
His autism had changed.
The autism community had changed.

Today we live in a culture where there is autism awareness and celebration. Awe-tism.  I wondered how awesome our sons felt in their autism? I wondered, if given the chance, would our older son want to speak, or did he prefer life just the way is was?

Is he a child trapped in his own body, or is he a child who happened to communicate differently?

Somewhere around his seventh birthday, I stopped pushing my wishes on him. I felt that my wishes might be too demanding. So, I stopped demanding, and I embraced the child that stood before me.

If he truly did not ever call me by name, say that he loved me or learn to express himself beyond his most basic needs then so be it. His skill level was a part of him.

And, I love him.

That's how I felt, anyway. As I watched him sitting so quietly on the floor with his vacuum this evening, I wondered what he wanted? Assisted technology with him has not been an easy road. It isn't as though he has embraced it, ready for an outlet through which he can express his thoughts. Often, he pushed it away.

Our most successful venture to date are "yes" and "no" picture symbols offered for his use in response to our questions.


I watched him sitting on the floor for a little more before I decided to grab those cards, and when I approached him, he saw them and said, "All done."

"We will be all done if you cooperate and answer three questions for me." I told him.

I usually start with two obvious questions to be sure that he is engaged in the conversation. Once I was convinced that he was, I asked him this:

"Do you wish that you could talk with words?"

He hesitated and looked me squarely in the eyes. Then, his eyes dropped to his lap as he thought for a few seconds before he raised his right index finger to point to the card that said, "Yes."

My heart dropped.  Yes, yes, of course he must.

"You said, 'Yes'."  I validated for him. "I understand that. Thank you for telling me."

More than ever, I was left with the realization that, no matter how many advances one may think the autism community has made, I'm still living with a low verbal child who I must prepare to live in a highly verbal world.

I wish there was an easy way to do that.

"I love you buddy," I said to him; and I left him in peace to play with his vacuum. "Your parents will always be here for you."



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This entry was written in response to a word prompt issued by The Group Blogging Experience 2 (GBE2).

16 comments:

  1. As always, Amy, I love reading your posts! Thanks for sharing another glimpse into your world!

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    1. Tasha, you're such a great cheerleader! This language boot camp happened just before the chaos of home therapy started. We received the diagnosis and wanted to prove that he was just a late talker. lol. Guess he still is. I felt so awful for him when he told me that he wished he could use words. I guess I'd always thought that, since he seemed to shun most AT devices, then the autism in him meant he didn't want the personal connection...

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  2. "Today we live in a culture where there is autism awareness and celebration. Awe-tism. I wondered how awesome our sons felt in their autism?"

    I truly believe that YOU do make them feel Awe-some. In their unique way and in the way you show them you love them, on all levels. Keep up the awe-inspiring work (and writing)you do Amy!

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  3. I do wonder about that. It's all guess work. But, thank you, Amy. You are a great support! :)

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  4. Amy, Thanks for sharing such personal feelings... About the love of your child.

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    1. Thanks for reading. It's been a while since I've written. I'm trying to juggle writing with one child home all day. I appreciate the loyalty!!

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  5. There might not be as many words shared in your house as there are in many others, but the love there is unmistakable. That really is the biggest gift we can give our children--the knowledge, deep down inside, that they are cherished, exactly how they are. Isn't that what we all need most?

    You're the best, Amy. Truly.

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    1. Thank you for saying that, Beth.

      I had to learn that lesson of loving the hard way. Maybe another autism parent reading this can learn from it. I appreciate your mentioning it. For so long, I tried to cure him with therapies and treatments that I'm afraid the message I sent was that I did not accept him the way he is.

      I don't think any of our children can move forward under such parental pressure---special needs or not.

      xo

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  6. yup......im crying. SOOooo cracked up with his response to glasses...LOLOL still smiling about that...you know. Its as if they are trapped..IN HEAVEN...we are...what rhymes with glasses. Well compared to the beauty where he rests ((hugs)) Thank God for parents.........for God's wisdom, knowing...what womb will never give up

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  7. I know, without any doubt in my mind, that on some level, Trey knows that you want only the best for him. Any child understands love and you show him that in abundance. Giving him the love and safe environment that you provide puts him strides ahead of so many kids with his problems. Having worked in the school system for several years and working with special needs kids, I have seen first hand kids like yours who do not get the love and support you give your boys. It would break your heart; it did mine. Your boys are so blessed to have you and your husband as parents because you make their life awesome.

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  8. I watched a show called Eureka and it is a great show. One of the main characters had a child who was autistic and low-verbal (and genius) and halfway through the shows run the producers decided to switch things up and did a "parallel universe" type of thing where they end up in a different world with the same people. They changed a bunch of things, but a big part of it was the child she had was not not autistic. I was MAD that they did that, because yes now they have a new teenage character that they can use for various hijinks but there needs to be real characters out there dealing with autism. [to give them a break, they did have a few episodes where it showed his mom and dad struggling with it and loving him regardless]

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  9. You've put so much of yourself into your kids through joys and sacrifices. I hope they will achieve to their highest heights.

    http://joycelansky.blogspot.com

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  10. Some people donot appreciate the effort parents put in their kids. He may or may not express it that much, but he must feel all that you do for him.

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  11. It's a trial and error thing, raising your sons and they are obviously benefiting from your efforts. Knowing he wants to use words tells you that one day, in his time, as all things must be, he will reach for a keyboard if the verbal words fail him and he will talk to you and to me and to anyone else he chooses to communicate openly with. He will use the technology that he sees you and Dad using on a regular basis and it will be his way to reach out and share. I have believed this forever, since I first 'met' you guys. That was even before I had developed such feelings for all of you.
    His brilliance and his desire will take him there. Your love and devotion will sustain him there. Daddy's tech abilities will make it work for him.

    And Will will tell you endlessly how it works! :-)

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