My oldest, Alden, is in a skit during next week's school assembly. He'll be the letter O. He's been practicing his line with glee in his smiling face all weekend. This is because he thinks I'm coming to his assembly. He thinks a lot of things actually, half of which don't come true these days. It's one of the ravages of living with autism. One doesn't get to be a normal kid, even when one is a normal kid.
I will not be going to the assembly. I'll be at SARRC with Cale trying to get him to interact with me in front of a group of therapists, trying to rationalize in my mind why I can't get my own child to interact with me. I get to pay attention to the one that doesn't want my attention, and ignore the one that does.
Someone will be at the play. It'll either be Daddy or Grandpa or Grandma, and that will have to do. I often tell Alden how grand and magical and full of love heaven must be to have sent him so many people that love him, but he still tends to look at me and say, "Why can't you come Mom?"
I can just picture Alden on stage in his letter O costume, his puff of blond hair poking out the top of a kid sized, stuffed oblong circle. The skit will be held in the auditorium of his windowless, giant box school where the artificial lighting glares off the frigid linoleum in long blinding streaks, and where the tiniest noise booms like a canon blast. Isabel can't stand to be in that auditorium at all. We took her there for an ice-cream social at the beginning of the school year. She stuffed her fingers into her ears and cried under a table for the duration of the ice-cream consumption. I adore Isabel. She often does what I feel like doing.
This auditorium is chilly at best, in spite of it's vastness, until they fill it with singing children. Then it warms like an ice-cube in a hot tub. I love Alden's assemblies.
He got a citizenship award during an assembly last year, and I'm such a gushy mom. I remember standing there smiling big which was in direct contrast to the fact that I was crying uncontrollably, my tears hitting the cold floor and pooling under my dress. People looked at me like, "What? Your kid's getting a small award. What's with the tears?" NO ONE else was crying.
And I remember thinking, "Ahh...let them look." I savor shit like this like lemon popsicles on a hot afternoon. I had just spent a year helping a woman who had lost her kids through drinking and using drugs. The details obviously wouldn't be appropriate for me to go into in a blog. In a nut shell, we did months of work and she finally got her kids back. Then she promptly got drunk and lost them again. The whole thing being fresh in my mind at the time of that assembly, made me shake from my core with gratitude. Maybe it sounds mean, but I was glad that wasn't me. It might've been at one point if I hadn't overcome certain obstacles.
So I choose to let "small" citizenship awards part the clouds themselves and strike me with nothing less than the ecstasy of heaven. It is nothing short of an absolute miracle that I get to be here with all of my presence, to observe such things. To live in gratitude over little life happenings, boiling just under the surface of my skin is just about as grand as grand can be.
For next week's assembly, however, Alden won't be looking for me as he says his line. By then I will have gotten up the guts to tell him that I won't be there to shake with gratitude and cry onto the floor. The lemon popsicles are on the back burner for now.
Alden's teacher knows that he has two autistic siblings and when Alden comes to school with an empty backpack on his day to provide snacks for the class, she makes him the V.I.P. (Very Important Person). He loves being the V.I.P. It means he gets to be her class helper all day long. At snack time, he passes out the teacher's "back-up" snacks completely unaware that anything's ever been forgotten. I think his teacher is the V.I.P. don't you? In dealing with autism (and other special needs) there will always be people that don't care. But don't be alarmed when you encounter them because there will also ALWAYS be people that do care.
I've tried to explain to Alden that his sister and brother both have autism. It's difficult to explain what autism is to an adult. Try explaining it to a six year old. The words have nothing real to attach to and they float away like balloons after a birthday party. I found a children's book that is designed to explain autism to a "neuro-typical" (normal) sibling. I just haven't gotten around to buying it yet. It's on the list.
Alden does know that he doesn't get to go to many birthday parties, join soccer, or have his mom show up at school during lunch time like his other friends do. He also knows his parents are arguing a lot these days and that we're often too tired (and too desperate for bedtime's promise of quiet) to read him a story before bed.
During the Autism conference I went to a couple of weeks ago, Temple Grandin's mother (Eustacia Cutler) was the kick-off speaker. And "Wow" is really the only word to use. After the talk we were given the opportunity to ask her questions.
One of the questions asked of her was, "If there was one thing you could've done differently on your life journey through Temple's autism, what would it have been?" And do you know what she said? She said, "I would've done better by the siblings." I bought her book and in it she says this:
"...my other three children have asked to be omitted from this tale, which says worlds about their childhood or lack of it. While trying to help Temple, I left them in the dark. Their innocence lost, they had to be braver and more generous than children should have to be. Temple and Daddy were the stars - the siblings and I, minor constellations circling uneasily around them."
Alden has to be braver and more generous too. He HAS to be a minor constellation too, because autism is the center of our current world. There are untold obstacles in our path, in Alden's path. He often has to sacrifice his six year old needs for the good of his siblings. And this is not a fact that will change as he gets older. That's just the reality.
But I pray for the strength and the energy to keep him in the light. I took him on a "date" to the library today and we checked out three Junie B. Jones books (which he's been asking me for). They're the first chapter books he's read and he is so proud. And Shane has starting taking him to swimming lessons WITHOUT his brother and sister. It's just Alden and Daddy time. He puts on his swimming suit the second he gets home from school and then proceeds to wait for the next TWO HOURS for his dad to get home from work. I'd say he looks forward to the swimming lessons.
Maybe Eustacia's willingness to share her experience with me can have the same effect on me as the mother that lost her kids from drinking and using. Maybe I can avoid, at least to some extent, her experience. And maybe I can shake with gratitude for helping Alden overcome the obstacles of living with autism. Maybe I can shake with gratitude for our whole family being strong enough to overcome the obstacles of autism.
Shane said to me once that he hopes to become grateful for autism. I thought he was nuts. GRATEFUL for AUTISM! I think I might actually have said, "That's just about the stupidest thing I've ever heard!" He smiled and said, "No it's not."
And you know? That idea is starting to solidify. Think about it. Autism forces my family into being better than it wants to be. We have made changes we've never been motivated to make before. We HAVE to reach out to others for help. We have to buy organic produce, eat better, exercise more, communicate more effectively with each other, work together as a team. We have to sacrifice our individual selfishness for the good of the whole, buy perfume free lotion, and love each other hard. Oh...that last ones sets me shaking at the core again in and of itself. Yum.
I will be there with Alden in spirit, as he sacrifices his mom's presence for the good of the whole. Maybe one day in the distant future, I'll remind him of the day I was absent. The day he stood in front of his entire school in a stuffed O costume and said a sentence as full of meaning for his family as any other sentence in the whole wide world, "O is for the obstacles we've learned to overcome."
