I’ve been writing monthly articles in the Capital District Parent Pages for almost a year now and the August column was the hardest one I’ve had to write yet. How do I say what’s happening? I edited it about ten thousand times. The issue came out today. For those of you who don’t get the Capital District Parent Pages, here’s what I said:
Normal is a Dryer Setting
August 2011
Well, here we go. Sometime during the week of August 15th, Andy and I will drop Jonah off at an educational residence for children with autism; he’s been accepted in both an appropriate house and classroom there.
It’s a beautiful campus. Really. The classrooms are cheerful, the staff is engaged, the kids look happy, and the children’s residences are real houses – immaculate duplex-like homes where Jonah will even have his own room. There’s a recreation center and a big pool, and Jonah will be able to go out into the community, to movies and restaurants, playgrounds and museums. He can’t do those things anymore here. I know in my heart that Andy and I can’t provide the therapies he needs; this is Jonah’s chance to truly thrive.
I must sound like I’m trying to justify our decision, to convince you we’re not throwing our child away. The truth is I have no idea how to do this thing. I have to believe Jonah will be protected and happy. I need to imagine him learning and laughing. There is no other option if we are to drop him off and drive away. In the meantime, I cry. I have nightmares, nagging thoughts of negative scenarios. My head fully understands the necessity and wisdom of moving him there, but God, my heart. Each day is another day closer to that inevitable day, and my heart mourns. I’m grieving for him even though he isn’t yet gone.
I’m going about it all wrong, I know. What you focus on expands, they say, so I’m going to stay focused on the good stuff – like giggling when Jonah, apropos of nothing, invents a goofy phrase. Or hearing him shriek with delight when his lithe body hits the surface of the swimming pool. And chasing him around his bedroom with a towel to wipe away bath bubbles still clinging to his body. Watching him sleeping, tranquil, his breathing slowed and deep…pressing small kisses into his cheeks…inhaling the little-boy-scent of his tousled hair.
I‘ll concentrate on shopping for things he needs for his room. I’m splurging on the best of everything there is – Egyptian cotton sheets and thick, luxurious bath towels in bright, primary colors. A late-afternoon-sky colored comforter with a floor rug to match. The softest blanket I could find. I want him to be comfortable.
I’m making him photo albums he can’t rip and filling them with pictures of all his relatives, the people and animals he knows, and the places he’s been. I want him to remember his loves. I want to be able to explain to him what is happening: mom and dad will be back, and this is a new and exciting place to grow, play, and learn. I’ll write a social story – something often utilized to explain a concept to kids with autism using short sentences accompanied by pictures.
Everything changes. This is a new chapter in a new book. Maybe even a whole new library. I’m grateful to everyone who has made places like this available – and so much better than they once were. I’m grateful to those families who’ve endured tragedies and had the courage to turn them into advocacy for things like access-to-information laws and changing the system for the better, to protect my son and others like him. I’m grateful I live in a country where services are provided for people with disabilities, and a state in which lawmakers now recognize the importance of ensuring safe educational residences for people who need them. I’ll never complain about taxes in New York again.
Still, though, it’s all so surreal and unthinkable. I want to be a parent advocate for other people going through this process. If I can be a comfort to just one other family, it will help. The knowledge that you are not alone in something is invaluable; I know I’m buoyed by the parents I’m in contact with who’ve had to do this too.
As Jonah goes away, I will be visiting him as much as possible, ensuring he is happy and safe, and loving him with more strength than I ever have before. So goodbye for now, little boo. Once you are in the hands of a round-the-clock team of specialists, you will bloom into the best boy you can be. Your mama knows you are bright and silly, fun and eager to learn. You show ‘em, sweetheart. They’re going to love you. I just know it.
The Never Normal 