Dear Justin,
The other day I was having a lovely conversation with a woman who was assigned to speak with me as I am a participant in CHOP’s Family Partners Program. She asked me some very insightful questions, and we have yet to really scratch the surface. One question didn’t come up but was one I thought about later to discuss with her.
What is the hardest part about having a child with autism?
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I would have to say the answer to that question has changed many times over the years. When you were younger, it was that you couldn’t talk and didn’t sleep much. Your limited palate was a challenge. As you grew older and hit puberty, your intermittent anger made life difficult. There have been so many things that have been impediments to your happiness, so many mysteries I desperately wanted to solve so that you would be at peace.
Sometimes your dad and I figured them out. Sometimes, despite trying our best, we did not.
We’re in a very good place with you right now. You are doing beautifully at school, in the home, and in the community. You have a volunteer job at a local office, and are starting to do class field trips again which brings me joy. Your inherently happy nature now shines through.
But the truth is, I feel only your dad and I see it.
Glimmers of smiles come through at school periodically. Your teacher is sweet enough to write about them on your daily report, which always brings me a smile.
Four years ago you developed a co-morbid disorder called tic disorder, which seemed to rob you simultaneously of your personality and your happiness. It has been a long road back, but your father and I do see them break through here and there.
It’s in the way you stop me in my tracks when we’re on one of our walks and plant a solid kiss on my face. It’s how you cup my cheeks with both hands when you’re getting dressed, as if you’re holding something precious. It’s how you lean in to your father when he’s putting you into your pajamas, reluctant to relinquish your hold on him.
It’s in the way your brilliant, beautiful smile takes over your face when reunited with your Christmas toys.
I feel so grateful and fortunate to say that right now, my only real challenge with you is knowing that most people don’t see that side of you. With most individuals there is no eye contact or interaction. I don’t want them to think that’s all there is to you.
So I’m writing about you here, to let the world know your affectionate nature, your tender heart. I hope those that cross your path will witness your love.
I am always so grateful to receive it.
We love you, our brave boy.
For more on my family visit my blog at autismmommytherapist.wordpress.com
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