Friday, May 19, 2006

This Lane Ends: Merge Right.

The last two years with Peter have felt like a drive down an unfamiliar country road. There are potholes and patches of gravel, the turns aren't marked very well, and the weirdest things show up in the middle of the road now and then, but the view is absolutely incredible, with unexpected vistas unfolding at every bend. I've been going along for quite a while, sticking with the main road when I wasn't sure which turn to take, enjoying the scenery, and hoping desperately that a recognizable street sign would show up pretty soon.

The street sign arrived last Friday in the form of a gentle, kindhearted woman sitting comfortably on the floor of my family room, bare legs tucked under her summer dress as she built a Lincoln Log house with my son. Maija is the autism specialist at Peter's special ed preschool, and she had come to visit with me and observe Peter in his home environment. After a long interview at my kitchen table that felt more like a chat with an old friend than a formal assessment, she settled down on the carpet to get a ground-level view of life with Peter. She played with him in that curiously organized fashion used by good educators everywhere, each interaction instructing the child or the teacher, sometimes both.

After a while, Maija set her paperwork aside and said that she had one last question. I was unprepared for both the question and for my emotional response to it. It was simple: "Do you think he's autistic?" I was startled to realize that with all the legal proscriptions surrounding the issue of autism within the state-run special education services, no one more official than my best friend had ever asked me that question. I thought through all my research, my discussions with other mothers, and my gut-level instinct. I started to respond. I stopped, swallowed, and tried again. It was a simple question, so I answered it simply: "Yes. High-functioning autistic, but yes, I think he is."

I have never in my life wanted so badly to lie. I wanted to say, "No, I think he's a little speech-delayed, and he's definitely got his dad's ability to focus on things, and maybe some of his mom's tendency to repeat herself, but he'll grow out of it, I'm sure of it." It would have only put off the inevitable, though, and only for about ten seconds. She knew it, and I knew it. When Michael and I met with the rest of his team a few days later, it was obvious that they knew it too.

It turns out that the word "autism" opens a floodgate of response from nearly everyone who hears it. I have been deluged with websites, titles of books, phone numbers, e-mail addresses, and random scraps of advice from every direction. All of it is offered in love and kindness, and the information I've had the energy to pursue appears to be useful and hopeful. Peter is fortunate to have been diagnosed at a time when there is more public awareness of autism than ever before, with the research and support that comes with that attention. I will not be one of the pioneers, the brave mothers of the last century who insisted that their children did not belong in institutions, who battered down doors that their sons and daughters needed to walk through, and held their hands along the way.

The road is clear, and there are detailed maps for every possible route, detour, speed bump, and item of interest along the way. But I have grown accustomed to my quiet country byways, and I don't know quite how to merge from my dirt road to the 65 mph zone of the road ahead. I have my directions; what I need now is courage.


At 5/20/2006, Anonymous Janet said...

You already have showed that you have courage by just getting to this place with Peter! I will pray for courage and wisdom as you take the next steps of this journey.
Love, Janet

At 5/21/2006, Anonymous Anonymous said...

Thanks for writing so eloquently, clearly, and honestly about this experience. I'm impressed by your candor and insight. It's a privilege to be able to share a bit of your journey with Peter and Michael. And through it all you've kept that unique wonderful sense of humor.
Uncle Gary

At 5/21/2006, Anonymous Mama Kate said...

Brenda: I know this isn't a path you anticipated, but I am confident in your ability to meet the challenge. I love you and Peter and Michael and Mary so much!


At 5/22/2006, Blogger Scott William Carter said...

I don't doubt you have the courage. Peter is lucky to have a Mom like you.

Thanks for sharing!



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