Second Opinion

A couple weeks ago we took Josh to see another developmental pediatrician. The first one we saw didn't have much of a bedside manner. The best way to describe the experience was kind of like an episode of Monk without the funny. We didn't want to take Josh back to her since she seemed to regard him as some sort of parasite. And though children technically are parasites in the sense that they devour your energy, your time, your money and pretty much anything else you can give them, there really is no need to treat them so.

We made an appointment with the guy who is supposed to be the most knowledgeable developmental pediatrician in our area. His soonest appt. was in May. Yikes! But through prayer we were able to get in on a cancellation appt. He seemed like a nice enough guy and we're stuck with him because I don't think I can ask for a third opinion. I don't think the insurance would cover it and it just feels like denial. Unfortunately the good doctor used the "A" word -- autism. Instead of the oddly comforting vagueness of PDD we were given a diagnosis of "moderate autism." We weren't expecting a worse diagnosis and are understandably still coming to terms with this.

Fortunately, we've been so blessed with wonderful support from family and friends. Josh loves his preschool and his teachers. He is so excited to go to school every morning and sometimes I wish he was a little more sad to see me go when I drop him off. The people at his preschool are really on the ball. With the new diagnosis they immediately set in motion the process for adding more services. Josh's teachers reassured me and the women at the school who works with the families gave me some information and more importantly, a hug. They let me know about a support group that takes place while Josh is in class and to which I can bring Jane. The first meeting is tomorrow morning. On the reminder notice for the support group a letter was copied on the back. The letter was written by Emily Pearl Kingsley to "Dear Abby" and dated 10/29/88. I retyped it here because I think it really helps explain this whole experience.

"I am often asked to describe the experience of raising a child with a disability - to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this:

"When you're going to have a baby, it's like planning a fabulous vacation trip - to Italy. You buy a bunch of guidebooks and make your wonderful plans. The Coliseum, the Michelangelo David, the gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting."

"After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland."

"Holland?!" you say. "What do you mean Holland? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy."

"But there's been a change in the flight plan. They've landed in Holland and there you must stay."

"The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place."

"So you must go out and buy new guidebooks. And you must learn a whole new language. And you will meet a whole new group of people you would never have met."

"It's just a different place. It's a slower pace than Italy, less flashy than Italy. But after you've been there a while and you catch your breath, you look around, and you begin to notice that Holland has windmills, Holland has tulips, Holland even has Rembrandts."

"But everyone you know is busy coming and going from Italy, and they're bragging about what a wonderful time they had there. And for the rest of your life you will say, Yes, that's where I was supposed to go. That's what I had planned."

"The pain of that will never, ever, ever go away, because the loss of that dream is a very significant loss."

"But if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, very loving things about Holland."