Monday, May 20, 2013

Strong Love

Having James as my child has been an adventure. Our kids teach us new things and make us rediscover or see our world differently.

I've learned many lessons from both my kids - patience I never suspected I had, unconditional love I hoped I had, and how to be strong and not live in fear.

Especially so with James, who is autistic. Like many spectrum kids, he displays a complete disregard for personal awareness/safety that requires almost constant vigilance and nerves of steel. I can't tell you how many times I've seen (in my mind) his playful, laughing face looking backwards at me as he dashes out in front of a moving car and wham! seeing his light go out, and no more James. It's literally one of my worst nightmares, because we've had close calls. Every time we exit the car in a parking lot I have to remind him to wait by the car until we can walk together.

When he was younger, James would leave the house and go wandering off. Sometimes he'd stay in the yard, sometimes he'd wander down the sidewalk. I remember waking up one night and finding him standing in the darkened house right by the front door, tall and able enough to open the locks and wander outside. I've pretty much been sleeping on the sofa ever since that night.

Both my kids hated like poison to have water on their heads and having their hair washed. They freaked out in a pool or large body of water. They panicked if  anyone splashed water their way and did not like the unsteady buoyancy while in water. It's really difficult to describe the mental fortitude required to deal with these reactions to basic self care activities.

I was able to start my daughter's water safety early with Mommy and Me swim lessons. Her sensory sensitivity has not been as extreme as James'.  Still, it took over 3 years of swim lessons before she would put her head underwater.

James has been even more of a challenge to get used to water. Showers literally terrify him and he considers washing his hair as a form of water torture. I made it a point to take both kids into the pool with me during the summer. Countless afternoons we'd sit on the steps and I'd coax the down one more step, try a little splashing, and take them out into deeper water and get them used to floating with my hands supporting them. It's been a huge uphill climb and I come from a very swim-happy family. I am lucky to have had the opportunities to be persistent with water safety preparedness.

We live near a big river and like to visit the ocean, so I wanted to get them confident and learn how to be safe around water. I know that kids are attracted to water and wanted to help keep them safe. I did not know, when I started all my pool excursions, how dangerous an attraction water, wandering, and autism can be.

Sadly, I am learning (CDC report, in PDF format). Over the past week, I have read of 2 autistic children wandering off and being found later, drowned in water.

In particular, my heart goes out to a local family, the Lynches, who lost their daughter a little over a week ago. Seeing her pictures broke my heart a little. She was so obviously loved, and her quirky smile so beautiful and so like my son James'. 

It just kills me a little to realize she's gone so suddenly. Because that could so easily have been James. Because these special kiddos make a light in the world; they can be so difficult to manage and also so horribly missed when gone.

I know how strong my love has become for James and all his uniqueness, so I understand a little what the families are grieving and how much they have lost. This post in in support of the family of Mikaela Lynch.

If you would like to read more, please visit the FaceBook page An Outpouring of Love for the Mikaela Lynch Family, and show your support.

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