Wednesday, April 7, 2010

There's a Little Boy in There

One night I had the opportunity to ride shotgun in a mini-van with another mom as we returned from an overnight trip to Salt Lake City. Behind us, the car was full of giggling, chattering teenage girls as well as the music they had requested. As Kristin gripped the steering wheel to safely keep up with the intimidating pace of the lead vehicle of our tiny convoy, we kept up steady conversation; the heater keeping us toasty and the music volume being readjusted continually.

I always enjoy getting to know people. My inquisitiveness never ends. This conversation was especially fun because Kristin seemed genuinely interested in getting to know me, too. We shared many a hardy laugh as we found similarities in our personalities. Like how, at the mall that day, a young woman had pulled Kristin down into a chair to let her sample the best base foundation ever. As the girl applied the makeup on Kristin's face she rambled on about her looking great for Christmas dinner. In the car, Kristin and I threw our heads back in laughter because neither one of us even own a lick of makeup.

Eventually, the conversation turned to a topic where we had nothing in common. Kristin's thirteen year old son has Tuberous Sclerosis. Davis has more tumors in his brain than the radiologist could count.

First and foremost, let me say that I'm probably not aware of the politically correct terms, so accept my apology right now. I did not grow up around anyone with disabilities or mental retardation. Even now, as an adult, it makes me nervous just because I'm afraid to offend.

My first time to interact with Davis was when I did a photo shoot of Kristin's family. Prior to the shoot I asked lots of questions to learn Davis's level of awareness and how best to prepare. And as far as interacting with Davis personally, I followed his family's example.

Davis is my height with wavy dark red hair. When he's happy his eyes twinkle and he has a great smile. Until I got used to it, his way of vocalizing was a little unnerving, but I began to recognize when he was happy and learned how to capture his attention. Davis loves music. According to his mom, Davis vocalizes along to songs from Sound of Music, Fiddler on the Roof, and Children's Primary songs. When he's really excited, Davis will go from person to person vocalizing while smiling into face after face. And he doesn't mind at all being touched.

So during this long drive, I learned that Davis was far, far different up till the age of five. Autism had been just one of the many possible symptoms of Tuberous Sclerosis and the official diagnosis of autism was made when Davis was three. During an evaluation, Davis spun every toy they gave him. The test administrator tried to get him to imitate her by driving a small car back and forth and then handing it to Davis. He would spin it. There was no evidence that he understood anything, except when his mom would say his name, which elicited only a turn of his head. When spoken to, even about favorite items or activities, his expression never changed until he actually saw or did it. To which, they would have to carry him because he wouldn't come when called. He would never express a want. He didn't gesture to communicate. He never, ever initiated contact of any sort with even his own adoring mother.

As we drove through the dark night surrounded by the frigid cold, our eyes seeing only as far as the headlights could reach, I felt Kristin's pain deep inside my own mommy heart. Then she told of a time when she was with a friend talking and her friend's daughter brought something to her. The little girl's mom brushed her off. Kristin stopped her friend and told her what a gift it was that her daughter did that. Then Kristin looked at me and said, "She took for granted something I wanted so badly from my son!"
I looked at Kristin and said, "Well, after this conversation that's something I'll never do again."

When Davis was four and a half, they started him on the Son-Rise program. Kristin and her husband received training and set up a playroom. They started with one hour a day, then two. With volunteer help they were able to build up to Davis having someone with him in the play room twelve hours a day. These patient and generous souls, including mom and dad, would join him in the playroom one on one. If Davis was spinning a Matchbox car, they would too. The very first and quite significant change brought on by simply "joining" him was that instead of remaining completely shut off from whatever was going on around him, Davis noticed the other person. He would actually pause what he was doing to look at the car being spun by another person.

Early in the program, on a day when Kristin was with Davis, she started dropping balls into a bucket. Davis stopped what he was doing to watch. She kept doing this for quite a while; buoyed by the fact that he seemed interested. When Davis made the simple act of coming over to where the action was, she was so excited she wanted to run and get her family. But she stuck with it. Eventually, she tried handing him a ball. He took the ball from her. Then she tried, "Davis, drop the ball into the bucket." He did it! After five years of never seeing her son mimic anything that anyone did, Kristin was actually seeing progress.

On another day, when she was in the playroom, Kristin was blowing up a balloon and letting it go to fly away. Davis liked this. He would kind of laugh while it wiggled noisily through the room. Kristin repeated the process over and over: blow it up, let it go. Then one time, when the balloon landed close to where Davis was, he picked it up and gave it to her, as if to say, "Do it again." This was the first time Davis had ever made a request. As Kristin reminisced about this, she exclaimed the thought that, "Holy cow! There's a little boy in there!" I thought about my own toddlers when they couldn't speak. They never gave up trying to get what they wanted. And one of their favorite games was to copy what I was doing. Even recently, my three year old has started carrying a pen and paper with him to make "lists".

From an article by Kristin:

"There have been so many changes and they have all been truly amazing. Now he plays with toys. He plays with US! He had never before imitated me, or even shown any interest in what I was doing. Now he imitates us all the time. He initiates games with us. He is so interested and aware of what's going on around him and he wants to participate. His language development has been amazing. As we began to simplify our language in the playroom he quickly learned the names for many things. To date, about six months into the program, he has shown solid comprehension of over fifty words. For example, we can now say, "Where is the elephant?", and he will jump up and go get it. We can say, "Come sit down. ", and he does. I remember the first time I said, "Davis, come here.", and he came right over to me. We see this as nothing short of a miracle. It is so wonderful that he understands us now. We are equally delighted with his expressive language development. He is now pointing to things he wants. He will bring us an empty cup when he wants a drink, or take our hand and bring us to the toy shelf when he wants a toy. Or he will bring us things and give them to us indicating what he wants. Before Son-Rise he had never, ever handed me anything. It is so wonderful to have him making requests and letting us know what he wants and needs.

"I love the connection we now have with him. His version of a hug, which is to lean into me, just melts my heart. When I am in the playroom with him I think there is no where I'd rather be. Just today I brought in a peacock feather and he laughed and tickled my face and arms with the feather. How great is that! He knows I'm his mom. He knows I love him. He is so wonderful. We are so thankful we found out about the Son-Rise program and we are so honored to have the gift of Davis in our life."

Because of the Tuberous Sclerosis, Davis's condition is more extreme than a lot of other autistic children. The Son-Rise program was created decades ago by Barry and Samarhia Kaufman who were told by doctors that the only future for their then two year old son, Raun, was in an institution. Today Raun is a college graduate with no traces of autism.

I wanted to share Kristin's story because at first Kristin had never dared to have hope. Then she learned that not only was it okay, but even wonderful to have hope. If I tell twelve people about it, and they tell twelve other people it might just reach some one who doesn't have that hope.

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