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Wednesday, December 14, 2011

Slowly breaking through

I couldn't believe my eyes. In my hands before me was the most beautiful list. I blinked in disbelief. I know she's talking to me, but, really, I'm just trying to process this moment.

The morning brought me first thing to the office of our older son's new speech therapist. I wish I could count how many he's had since this journey began, but I can't--not right away, anyway. Life seems so distant from the days of in home therapy, when the therapists became part of our family, entering our home every day, sometimes before the frost had even cleared from the windshields of our cars.

Over those years, we shared birthdays, haircuts, happiness and frustrations spread out among the countless hours of therapy, therapy which I thought was going to cure him within a few short years. Back then, I didn't appreciated the marathon. I believed I was participating in a sprint. Then, I tired, sat back, and marked some time as he entered school and the therapists changed from year to year.

Sometimes, I feel like I gave up.

I really hoped some kind soul, going to work as a school-age therapist, had not given up and that our son would be placed on her roster. I'm sure that there are tens of thousands of sons out there with parents who have the same wish.

"You know," she said, "your son really has a great sense of humor."

How does she know?

And, with that, she placed before me a list of questions she had asked him during their morning session, all phrased so that they could be answered with a simple "yes" or "no." To fascilitate his communication, she had two pictures: one which said "yes" and one which said "no". Pointing to the pictures counted as an answer.

The list before me asked more things than I remember, but similar to, "Do fish fly?" and "Are you patient?" She has asked him if he took a trip to the mall the night before or if he got a haircut. All simple questions with simple answers but one glorious thread in common:

She had established two-way communication with him on a level that nobody else has. By phrazing questions to allow for simple "yes" or "no" answers, we could finally begin to tap into his thoughts.

I walked out of the building in a daze. Somehow, I found my car. I opened the door, sat down...and I cried.

I cried for my son who has learned to live with his thoughts.

In that moment, I recalled a particular therapy session during our at-home therapy days. Our long-standing speech therapist and beloved special educator at that time were co-treating him during an ABA (Applied Behavioral Analysis) session.

How old was he? Three? Perhaps four? Yes, I think he was four years old.

It was a rare time that I did not participate in the therapy for fear that there would be too many of us. So, I backed off a few steps and pretended to do work in the kitchen while Jody and Tasha went to work in the adjacent family room. They had prepared a picture book of various items, true-to-life pictures rather than drawings, objects our son should readily recognize in and around the house. To my memory, there may have been about fifteen items in this book.

They sat our son, practically nonverbal at the time, down in his chair and placed the book in front of him. Pointing to the first picture, Jody asked, "What's this?"

"House," he said. Indeed, it was a house.

Pointing to a loaf of bread, she then asked, "What's this?"

"Bread," he said.

I froze. I think I stopped breathing. I listened, time and again, as she would point to an item in the book-- a couch, a lamp, the van--and then hear our son correctly identify the object. Most of these words he was saying for the first time.

I lost it. I simply stood there, staring at the back of his adorable little head, and I bawled. Why had he not said these words before? What was it about being presented the pictures in this format that made it possible for his brain to process the words? Why? WHY?

I sobbed as they worked, for it was the first recognition for me as to just how much our son was with us even though he was not able to show us.

"Aren't you happy?" one of the therapists asked upon completion.

All I could do was to shake my head no. He was stuck. My son was in there, and he was stuck. I couldn't get him out no matter how many nights I stayed awake, searching the Internet for this potion or that new treatment.

He was stuck. And, a lot of the time, I think he liked it.

Some number of years after that heartbreaking moment for me, I was living the cliche of being able to bring a horse to water but not being able to make him drink.

I couldn't make him want this.

All I knew to do was to fight for the opportunity. And, so, this is where I have concentrated my time. We have been fighting for the proper medical care so that he is available to learn in school. We have advocated for the teacher, the school, the services...everything we can imagine.

And then, we sit. We watch, and we wait.

This morning, I felt the realization of a long journey with him as well as the beginning of a new one.

I'm hopeful and scared to be hopeful at the same time.


2 comments:

  1. Breakthroughs are indeed double edged. Maybe it would be okay to just rejoice in the moment without expecting anything more or even to have that moment relived. One day, it's possible, but who knows, for now it's just a very good moment.
    And a grain of hope for him. ♥

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  2. LOVE! Rejoice, celebrate, enjoy...You have done much to give him this. The years of exposure to so many experiences. Talking to him constantly, even when you were unsure he heard or understood. The power of a Mom believing, of anyone believing in you brings out the seemingly impossible!!! XOXO

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