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Wednesday, February 27, 2013

"When?"

"So, what's your plan for tomorrow?" my husband asked me the Sunday night before Martin Luther King Day.

It was a simple question, wholly justified, and, yet, one gigantic bummer that sucked my head from the sandy hole of denial that I typically donned in preparation for breaks from school.

MLK Day. Our younger son, school phobic and receiving a combination of home education and IEP services in our house, would have no therapists visiting him the next day. His brother, a child who finds comfort in routine, would not have his school program.

I couldn't run. I couldn't hide. I couldn't avoid the fact that our two sons would be home all day and that their energy, their behaviors, their needs and their autism would be all mine.

Handling our two kids together at one time is enough to put a person in a straight jacket, and it has always been that way. In the early days, I felt guilt in recognizing that I simply could not watch both of our children alone and emerge with my sanity intact. These days, I own it. Unfortunately, owning it has never released me from the responsibility. 

With their needs and interests so diverse, we have had little success in finding organized activities that held the attention of both children. Therefore, most breaks, I've often found myself running after our older son as he sprinted up and down mall escalators.  Up and down. Up and down. All the while, Little Brother lagged dangerously behind complaining that he didn't want to be there.

Or, perhaps we moved in and out of the elevators. In and out. In and out. Older Brother usually tried to pry open the doors while the elevator was still moving. He would lie down on the floor and press his face into the crease of the doorway and breathe in deeply the smell of the grease.  If even for one second I let down my guard, you can bet that he would lunge for the alarm  on the control panel. He so loved feeling the elevator come to a jolting halt. He would laugh. I would scold. Little Brother would cover his ears to muffle the pain of the alarm's shrieking bell.

We also visited carousels, often riding them nine, ten and eleven times. Sometimes, Big Brother would lie on the ground to watch the mechanics.  He wanted so desperately to get into the center of the carousel. He knew that one day, just one day, the Mother Board would be under his control.

Quite regularly, we even visited this local mall that is closed. The carousel sits, dark and lonely.  We would watch it and remember days gone by.



"But, Mom," our younger son has complained about these outings, "I don't want to go on an autism trip today." He believed that they were an exhausting, senseless waste of time, and I understood.

"You're brother finds them comforting," I would tell him. "We're  a family. We need to support each other." That's the best I had to offer.  Frankly, at his age, I'm not sure that I would have been satisfied with that answer, myself.

And so, mid-morning on MLK Day this year, we piled into our van, intent on an autism trip simply to run down the clock and maintain at least a small level of peace in our day--a paltry goal by any other standards, an almost insurmountable effort from my perch in the driver's seat that morning.

Chugging the last of my coffee, I pulled out of the garage and to the end of the driveway. It was there that I stopped, turned to our older son and asked, "Where are we going to go today?"

Rarely would he give me an exact location for an answer. There were too many places in the world and not enough motor control in his facial muscles to say the words that he wanted to say. Simply, he said to me, "Right, please."

Well, drat. All the places I liked were off to the left.

Turning right out of the driveway, I became lost in a battle between two voices inside my head. Uuuugghhh! I do NOT want to do this!  We have no choice but to do this.  This is going to be hoorrriiibbblllee!  Maybe this won't be so bad.  I wish this day was ooovveerrr!  Perhaps the day will surprise me.

I lingered over this last thought when I heard our older son ask me to drive him to a location I used to take him for therapy eight years ago. It is no longer in business.

"I'm sorry, Buddy," I told him, "that place is closed."

He the then named an area school complex where his summer services have been held.

"No, you can't go there, " I said. "It's a holiday today. The building is closed."

He asked for the local amusement park, which, of course, was closed for the winter months. And, he asked for the mall with the lonely, neglected carousel in hopes for a walk.

"No, we can't walk inside that mall," I sadly responded. "It is closed."

The same questions. He always asked me the same questions. I just did not understand why a child as intelligent as he had to ask the same questions repeatedly. And yet, here we were, running through the same script about the same places and how they were not open. They were, in fact, closed.  All of them were closed.

"When open?" he asked, only his articulation was way off.

Where? Where open? I looked at him through the rear view mirror, quickly scanning his face for clues. Traditionally, I've been his caretaker, his person. I'm the one who has known his wants and needs instinctively. Yet, as he's grown, my understanding of him has become less instinctive and more a result of study.

I watched him a lot.

"When open?" he asked me once more.

He did not use any of the "w" words conversationally--who, what, where, when and why. Whether he could not say them or if he lacked the social connectivity to have that two-way conversation with another person I did not know. All I did know was that using those words would involve a level of conversation we just did not have with this child. And yet, what else could he be saying?

"When open?" he inquired once more with such patience. It was almost as if he knew I was working so hard to understand him.

And then I did.

"Buddy, are you asking me when they will be open?" I asked him incredulously.

"Open!" he said, excited that I understood. "When. When open?"

Those questions! He was continually asking me the same questions because he wasn't getting the answers that he wanted. I had unknowingly fallen into a trap by thinking that my preteen, the one who could not ask "w" questions, for some reason did not want to know the information those questions provided.

While a toddler might be satiated knowing a favored destination is "closed", our growing 11-year-old surely was not.  His abandoned mall was once open. Would ever open again? How about the place where he attended therapy? Will it be closed forever? When is opening day for the amusement park? And, will he be attending summer school again in that school complex he liked? If so, when will that start?

When, mom? When, open?

It was brilliant, his first expression of an original thought outside of a basic need. It went beyond wanting a drink or needing help with something. He was asking a question about something that was on his mind for the first time ever.

Ever.

 I was called to remember to warring voices inside my head from earlier. I wonder if they will keep me company in my senile years? If so, and if I have a say about any of it, I do hope that The Whiner can make other arrangements. Her friend, however, was quite intuitive. I was surprised that day, and suddenly, my outlook was completely changed.

"Let's go visit some carousels, Buddy!" I readily agreed  when he asked me to take him to his abandoned mall. The weather outside was frigid, but there was no place I would rather be than standing with him, staring at that quiet carousel, and talking to him about all the things he might be thinking.

















10 comments:

  1. What a joy to have you share this moment of discovery with us! I learn SO MUCH from you with every post.

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    1. Hi, Amy! We are all learning through my mistakes! :) My hope has always been for other parents to be able to read this and learn before they hit this stage. Maybe I can save them some trouble.

      Thanks for always being here to read and comment, Amy. You're the best!

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  2. I don't comment regularly, but I always enjoy catching up with your blog from time to time. My nephew is autistic & hearing parents' stories about their own experiences helps me better understand him and what his Mom goes through.

    BTW, I've nominated you for a Liebster Award.

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    1. Trish, thank you for the award!

      I love that you stop by here! That is exactly why I started to blog. Unless you live the life, you don't fully understand, and I know that I'm not great at fully explaining this life to my extended family while I'm busy trying to do damage control when something happens. My thought was that perhaps writing about some of the the events in my own life would help other parents as they rear their special needs children and also extended family members of children with special needs.

      I appreciate the time you've given to me.

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  3. Wonderful story, Amy! I'm so glad to hear about your son's breakthrough. I know his disappointment when a favorite place is gone, and having him make that connection with the outside world must have been so gratifying for you. Thank you so much for sharing your life with us. I haven't been able to do much blog reading lately, but I've always enjoyed your posts and will be back!

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    1. Thanks, Elaine! I haven't been doing much blog reading either. I'm really trying to carve out a regular routine. Since our younger son has been receiving schooling at home, writing has become difficult. Reading has been nearly impossible.

      Thank you for your support!

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  4. Loved this story. :) Thank you so much for sharing it. Btw, I'm a new follower from GBE:2 and my bloggee pal Jo Heroux, who I adore. :)

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    1. I have read your blog!! :) It's wonderful! However, as you might have read, I am struggling to find regular time to dedicate to writing/reading, etc. Thanks for stopping by. I adore Jo. We became friends through GBE2 and this blog, and now my kids even "know" her! :)

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    2. I adore you both right back! <3 >3

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  5. Since I am on the laptop, I will add the comment I tried to add from the iPad the other day.
    I am so excited to see him continuously reaching some new pinnacle and doing so without much ado. You react with tears of joy, I react with tears of joy and yet he simply moves forward.

    Oh, I tell you, he is so close to busting out! <3 xoxoxo

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