Sunday, May 24, 2009

the power of hope

Memorial Day weekend is always one of the busiest weekends of the year for me. I know, I probably should be lounging around with my family during the long holiday weekend.

But instead, for the past few years, I have packed up a toy store into the back of my minivan and hauled it about an hour north for one of my biggest "work" related events of the year. As most of you know, I'm a sales director for Discovery Toys, an educational toy company.

I choose when I work. And I don't like to work on weekends. But this one weekend of the year is very fulfilling to me in many ways. It's when hundreds and even thousands of people from around the world gather in the Chicago area for one of the largest autism conferences in the country: Autism One.

It's exhausting: Standing on my feet for three 12-hour days in a row, setting up my booth, talking to hundreds of people and then loading up the stray toys that are left on Sunday afternoon.

But I love this conference because the parents, therapists and doctors who stop by my booth don't see a huge display of toys. They see tools. They understand how important play is in the growth of a child's brain. They understand so acutely that play is not something every parent can take for granted. It's not just being silly or goofing around. It's essential to a child's development.

It's also overwhelming to be surrounded by autism for so many hours. It gives me only the tiniest glimpse of what it must be like to live in that world without end. One woman stated her feelings so well, when she came running up to my booth after finishing a seminar.

"It feels so good to see toys!" she exclaimed. It gave her a feeling of relief and comfort compared to all of the others booths lined up and down the hallways of the large hotel.

I'm sort of like a little island surrounded by the tricky waters of the other vendors: hyperbaric oxygen tanks, gluten free/casein free diet plans, auditory integration therapy, hormone therapy and the many other types of biomedical innovations that are being taught at the conference.

But I also noticed this year a current that seemed to be cascading through the crowds of people in attendance. They all had gathered for the same cause as previous years: Autism. But they seemed to be buoyed this year by a force stronger than ever: Hope.

Hope is an amazing thing, isn't it? Without it, why would parents travel from around the world to learn about the latest discoveries in treating a condition that 10 years ago was routinely labeled as "incurable". Hopeless.

To hear their stories is heartbreaking. Babies and toddlers developing normally. Then around 18 months, they stopped babbling. Stopped talking. Stopped looking Mom in the eye. Started twirling. Started flapping. Starting crying out in pain.

In this enclosed space of the Westin Hotel in Rosemont, assumptions don't match those in the medical community. Here, it's not only accepted, but an unquestioned fact that childhood immunizations are a large contributing factor.

This talk really disturbed me the first few years. I hope I can write more about this debate later on this week.

But this year, the focus was less on what had caused the problem and more on how to solve it.

"How old are your kids?" I asked one dad who was especially excited about my toy offerings and how he could use them with his sons.

"My boys are 3 and 1," he said. "But they are both NT."

(After a few years I've learned much of the lingo. So, I quickly figured that NT is code for neuro-typical. And that means their brains are developing "normally". They don't have autism.)

"Oh? What brings you to the conference then?" I asked.

"Well, my 3-year-old had autism. But he is cured."

It was a story I had heard a few times throughout the weekend. Sure. There were still lots of families coming up to my booth along with their kids who showed the classic signs of autism. There were several moms running up to me in desperation. "My son is having a severe meltdown. I need a toy. Now."

But there were also these stories I hadn't heard before. Radical diet changes. Infusions of vitamins and minerals. Oxygen treatments. And they were working.

Still... cured? You have to understand that the families that come to this conference, by their own admission, aren't mainstream. They represent a small percentage of families affected by autism who are waging war on this condition. They are looking at every possible solution. They are willing to try anything for their kids. And according to some of them, it's working.

During the last few hours of the conference, I stepped to the front of my booth to see that a little boy, about 9 years old, had dismantled by Marbleworks Deluxe set that I had painstakingly constructed as a display. All of the pieces were sitting in a big pile and he was carefully attaching a few tubes back together.

I love it when kids park themselves at my booth to play. But I was at the end of my energy level and ready to pack it up and go home. And, I will admit, after several days of putting toys back together, I didn't have a lot of confidence in this kid's ability.

He played quietly on the floor while I talked to my customers. After a while I heard the distinct sound of a marble running through the maze. I peered over the table. He had created a marble run that was far more elaborate and creative than anything I had ever built. He even had a jump halfway through where the marble soared off a ramp and landed on another part of the run.

He looked directly at me and asked, "Would you like me to put it back the way it was? Or should I leave it like this?"

"Oh, I definitely want you to leave it like that!" I answered. "It looks awesome."

This boy, Mark, went on to test out several of my other toys. But he would politely ask my permission before grabbing one and then thank me after he was finished. I found out through other passersby that he had just finished speaking at one of the sessions.

I asked him what he had talked about.

"Oh... how I was cured of autism."

I actually felt kind of sad when Mark's mom informed him it was time to go. Talking to him had been a joy. He carefully tweaked his Marbleworks run before thanking me and walking away.

And I realized I had a deficiency myself. He had given me a surge of something I had been needing all weekend.

Hope.


4 comments:

Jenny-Jenny said...

I am thrilled to hear about your weekend! What an experience. I didn't know that people were finding cures for autism. So, do 'they' think that childhood immunizations are part of what causes this? Way to go, Emily!

Maggie said...

very interesting and hopeful!

Sarah Eliza @ devastateboredom said...

Beautiful story! And fascinating and exciting too, the idea of curing autism really is mind-blowing. I'd be so interested to find out more of that boy's story...

A Musing Mom said...

Wow! That story brought tears to my eyes.

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