Saturday, May 15, 2010

The Autism Path

I feel that when I got my son Jack's autism diagnosis, it was as if I had been given directions to a trail head that started us down a path. The path was different than the one I'd planned on and this path was rockier than the one I left behind, but still, it was a path. Walking along this autism path was better than milling around aimlessly in a meadow, unable to find a trail head of any sort.

When I think of Jack's autism and where it takes us, I can actually see this path in my mind. It is made up of dirt and rocks and it winds through and up a mountain pass. I'm walking it with Jack, and my other children walk on either side of me. Sometimes the rocks in our path cause only Jack to stumble, but sometimes they are spread out so all of us trip and struggle.

Here's the thing about this difficult autism path though: It's beautiful. There are trees and ponds to the side, and every once in a while we see a deer or a squirrel. Yes, the terrain is bumpy, but the setting is gorgeous. This is how I see my life with Jack. Parenting a special needs child brings so much love, joy, learning, and amazement. Some days, when we trip and fall, we see a beautiful flower under a rock that we wouldn't have seen had we not stumbled.

Often times our children with autism forge straight ahead through the hardest section of the trail, but sometimes they notice that there is an easier way around. Every time they take that easier way, every time they learn that they should look for the possibility of an easier way, the sky seems to get a little brighter.

We're not alone on our path either. There are special needs families strewn all over this trail, walking with us. Sometimes we hold hands as we struggle up a steep incline and sometimes we catch each other as we slide down a scree-littered down-slope.

No matter where our paths are taking us—and they stretch all over the mountain—we all started from the same trail head, more or less. We all saw that signpost with the words, "Diagnosis: Autism" on it.

Some of us set off with purpose in our hearts and our heads held high. Some of us feared the heavy trees and that initial almost-vertical climb. Some of us tried to turn around to find a different trail. Many of us had hope. And we needed it too, because that first couple of miles? They are a bitch. The terrain is unpleasant and the overhanging trees block the view. There is so much to learn about how to climb and we often forget to look for the bright spots hidden among the boulders.

But we keep going because someone a little bit ahead holds out a hand, or we see a beautiful rock that a previous passer by dropped for us on the ground. We keep going, because our child keeps going, and he needs us to keep up. He needs us to remember that even when he is struggling up that path on unsteady legs, he is still the same child who days ago was frolicking in the meadow before someone said "autism" and pointed him toward this trail.

There are people who are much farther ahead of us on this path. Through the special needs parenting grapevine, word comes back that there is a really steep hike coming up. The word warns us to work hard and keep trying but don't despair, because there is a lovely flat section after you reach the top, and oh my God, you won't believe the view from up there.

These paths wind all over the mountain of autism, intersecting, diverging, and running parallel to each other. There are times when I am on my path, picking my way around trees when I can see my special needs friends on their paths below and above me. Some of them are struggling, some of them are running, and, look, that guy there is sitting down nursing a bruised knee.

But we all get up and we keep walking.

Sometimes the path is dark and scary. And sometimes its beauty takes our breath away. Sometimes we gaze at the path of neurotypicality on the valley floor and wish for those easy slopes and the way all of those paths run close together, providing easy company. There are some beautiful plants and geographic formations down there, that's for sure. We forget that there are hazards down there as well, that they are merely different from our own.

There are days that we don't envy those valley-floor paths, however. Those days we realize that those trails don't wind around high-altitude lakes, stunning in their beauty. Those paths don't force their walkers to fight through a bramble of thorns, which means their travelers don't get to feel the surge of pride and victory when they emerge back into the sunlight. We don't get to experience the same beauty as those walking on the valley floor, but our scenery is gorgeous in its own right.

Everyone's path is hard. Everyone has to struggle up and down the trail on which we have embarked. We struggle over the uneven ground and hope that around the bend there is a nice flat section or a tree stump, upon which we can take a rest and enjoy being with our fellow travelers.

But after we sit, after we rest, we stand up and we keep walking. We continue to find ways to help our kids avoid the most difficult pitfalls and we keep on in our search for that small, beautiful flower or the overwhelming gorgeous view.

We're tired, but we keep going, because we get to be with our children and they make the walk oh so worthwhile.

This post was previously published at Jean's personal blog, Stimeyland, and in her Washington Times Communities column, Autism Unexpected, but Jean decided to repost it here because she likes it and also because she has one birthday, two birthday parties with a combined total of 30 guests, and an IEP meeting to deal with in the next eight days. Plus she's going to buy mice for her kids. Please wish her luck. Or for her to come to her senses.

3 comments:

  1. I love this !! Must visit your blog
    I wrote about a similar feeling today
    This quote about sums it up for me
    “We are perishing for a lack of wonder………………… not for a lack of wonders”
    GK Chesterton
    Good luck on the IEP and the party

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  2. Beautiful. So true.

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  3. Thank you for your most beautiful metaphor of the Autism Path. My son, Neal, turned 16 last week. For the past 10 years, I have been somewhat of a "leader of the pack" in the autism world. - Happy to carve out a pathway and place stepping stones to ease other's journey. Now, here I am - feeling like I am again climbing Mt. Everest without a compass or adequate gear.
    Thank you for reminding me that we are never alone. That all we need to is reach out, ask someone who has gone before us, and take one step at a time to reveal the next indicated thing. Although it may often feel like we are walking in a fog - the true leaders are our children.
    At one time, Neal was afraid to even go outside the house. Now he has become one of my favorite hiking companions. His sense of direction is much better than mine; he finds lovely new pathways and creates his own at times. Sort of like the way Neal does life.
    Elaine Hall
    CoachE in Autism:the Musical
    Author, Now I See the Moon

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