Generally, I have nothing much to say about autism. It would be like commenting on dissected bits of my son. I don't know what additions are from his neurology, what subtractions might just be inherent to his personality, what pieces I can credit to me or his father and what parts might be genetic manifestations. I don't even think about it, really. It would be like considering the parts that make him a boy, or his sister a girl. Where does physiology and neurology and conditioning and environment begin, and where does it all end? I cannot even guess.
But inviting in difference and seeing a benefit to Henry's unique talents doesn't assuage entirely the challenges of raising a child with autism. Let me be clear: Autism is not a problem for us. We actually value the gifts that autism has provided our son, and we would never dream of changing the person he is or the way in which he perceives the world. At the same time, he is different. And difference isn't always welcome or understood.
Of course, we view all this through the lens of compassion. It is not hard for us...but for Henry. He reacts to the things that induce stress or anxiety or pain. Pain that we might not fully experience or even comprehend...but know can only be addressed by patience and sympathy, and gentle nudging toward acceptance and coping. He is unlike my daughter, who cries at being taunted by a peer or left out of a playground game. Instead, he falls to pieces when a crayon is broken in two. But the pain, the sadness, is all very much the same...it's just that the world better understands one sort of trigger than another.
And therein is the biggest struggle of our lives. We work. I travel. We have to leave Henry in the care of others....others who don't have autism. Others who might not even understand autism. Others whose sole exposure to autism might be a viewing of the stereotyped movie Rainman, or the editorial comments in the media about autistic disorder being some sort of "tragic epidemic." They don't react with tolerance or compassion when Henry falls apart over some seemingly innocuous event. When he screams or sobs or lashes out? They view it as "bad behavior." Henry has been thrown out of more child care centers, after school programs and sports activities than I can count. Because, flatly, the rest of the world really doesn't get it.
I'm in the process of trying to find Henry care for the summer months. It's nothing short of daunting. We have some good options...but trying to flush it all out is a full-time job all by itself. My husband looked at me from across the table last night, long after the kids had gone to bed, and said, Sometimes I just wish...
I could finish his sentence: I wish it wasn't so hard. I wish we could just pack him up and send him to a summer camp like his sister. I wish he didn't have to struggle so much for the things that come so easily to the rest of us. I wish we didn't have to worry that others would treat him kindly, or try to hear his words, or see how absolutely perfect he is in this world with autism.
I realize now how naive I was before I had Henry, when I thought heartbreaking things only happened to other people.
I am sure it will all come together. We'll find a solution, and it will be a good one. The right one. And sometimes, a touch of struggle is good. It makes you appreciate the absence of struggle just a little bit more.