Saturday, June 05, 2004

Joshwa: My Special Son

I think it's a blessing that my son's birthday is so close to Christmas Day. He’s the best Christmas gift that I have ever received. Having Joshwa taught us a lot of things like how to survive on four hours' sleep, the best ways to navigate through a tantrum, and how to make him eat vegetables. But I don't think I came face to face with the true range of what motherhood means to me until a surprising revelation came to me a few months month ago.

When Joshwa was 10 months old he had measles so I panicked and I took him to the pediatrician. While I was there at the doctors office I also asked the pediatrician is there something wrong with my son. Because he wouldn’t look at me when I call his name every time looked right into his face and he doesn’t seem to learning any of the tricks that I was teaching him. I always felt that something isn’t right. She quickly dismissed my fears saying that it was just normal no need to worry.

So I quickly rejected that thought because every time I would talk to my husband about it he’ll say that I’m too paranoid .I just filled myself with gratitude for the beautiful family that I have.

After 5 months I went back to the same doctor for Joshwa’s check up.I asked her the same question this time she gave me a different answer. Take your son to ENT (eyes , nose, throat) to have his hearing checked after that try to find a developmental pediatrician. Luckily I was able to find a developmental pediatrician on such a short notice. She gave me the grim news. Your son might have autism.

I knew nothing about Autism syndrome, but I had lots of frightening preconceptions. My first thought, was how can I help him. I kept blaming myself I felt such a failure I had dyscalulia and now I have passed something on to my son. I cried myself to sleep that night. When the tears dried, I began the long learning process that will continue, I imagine, for the rest of my life. Having resolved to find out everything I could, I went online, I read books, I talked to people. I was surprised to discover that everyone in the world, it seemed, knew or had an idea of what autism was. Everyone but me. I discovered an Internet support group for parents.. Our spirits soared. Friends and family had been very supportive, but, let's face it, they knew as much about Autism as we had. And they were all a little sad, too. But these other parents weren't sad at all. They felt that their children were a great gift, Autism or no.

As I pored over the books and talked with these other parents, I found the factual side of Autism fairly easy to piece together. No one really knows where it came from or what caused it according to studies Autism is a neurological disability most likely caused by immature development in the cerebellum & limbic system.

Of course, there was nothing in those reference books that could fully explain the other side of the story — the ups and downs of raising a child with Autism in our society. That's what we've been learning from Joshwa himself, and it's been a lesson filled with wonder. Joshwa’s life so far has been more complicated than other kid’s was. There are more ongoing appointments — he has therapy 5 times a week. There have been challenging days and frustrating moments as we've all struggled to learn about each other.

Joshwa is actually more like other kids than he is different. He will learn to walk, talk, read, sing, and dance, although he will have to work harder than most kids to reach those milestones. And we will have to slow down and allow him the extra time. Beyond that, he will have skills, talents, and quirks all his own. He already does. He can watch TV and not get distracted he knows when I’m angry and keeps quiet when I say no.

The future for people with Autism is brighter than it has ever been, which makes me hopeful for my son's adulthood. Early intervention, medical advances, inclusive schools that educate all kids together, and new therapies have meant that people with Autism can live longer, achieve more, and contribute to their communities in meaningful ways. Most of them graduate from high school, many live independently, marry, and have jobs.I dream about the possibilities. Will he love 80’s music the way his father does? Maybe he'll want to work as a Chef and run a restaurant , like what his my great grandmother does.

It has been only a short time since Joshwa came into our world. To a degree, we're still on an emotional roller coaster. We have days of unadulterated joy over our family and what Joshwa brings to us. Sometimes. Many days I feel guilty and unsure as to whether we're doing enough for Joshwa. Would he be better off if we could afford this program, those vitamins, or that new therapy? And sometime I get scared about what's down the road, especially when I think of the struggles he may face .

I've long since realized that our luck did not run out. Not at all. In many ways, our lives have been transformed. We have found loving support from people who used to be strangers. We look at the world differently and consider ourselves lucky to be able to. We have an appreciation for a slower pace, we take greater delight in each small step.