I have sat and pondered this week’s essay for many days now. Why should it be so hard to write about my daughter? The answer, of course, is mom guilt. It was so much harder to spot G’s special needs because–well–
She was the first. Her symptoms were milder. We thought we were just clueless over thinkers who didn’t know how to parent. We slowly became more isolated and didn’t even notice that it was happening.
Ugh. But here goes.
“Shoutout to Siblings Part 2”
In our Asian parenting, we often hold up as ideal sons and daughters people who excel at intuition, who observe quietly and understand how a family should function. Ram always knew what was in Dasharath’s heart even before the elderly king said a word*. Perhaps this is why we have to find our own individual ways to approach special needs parenting. The usual expectations cannot be applied, and our children are who they are, precious and eccentric and not following any rule books.
My daughter almost didn’t get the interventions she needed, so ephemeral and erratic were the manifestations of her symptoms sometimes, and so creative and subtle are her coping skills.
Sometimes the evidence slithered by in the form of how people treated her–teachers who grew impatient at her hesitation and finished her sentences for her, or who looked past her to the more confident students. Adults who assumed she was insolent because she didn’t understand hasty or overly rambling instructions, unspoken expectations, or facial expressions unaccompanied by explanations, so she didn’t know how to please those people. She was enjoying an ice cream cone at a restaurant once, and another kid’s dad looked at the chocolate dripping down her hand, at her sticky face, and her detached gaze, and he radiated disgust as he told his son not to be dirty like her.
She may not have that winsome charm that captivates the kind of adult who somehow expects only girls to be intuitive and fascinating, but at least I know she is a straight arrow and doesn’t use words to flay people.
I cannot tell you how much a kid like her can be preyed on by other children. It is too private to talk about in detail. Ironically, I worried so much about her brother being a potential target, but he was shielded by always being with classroom aides. She engaged in some intense withdrawal from peer groups for a while. Who could blame her. The Lord of the Flies scenes that played out were enough to make me shut the door on some of the parents too. Go away, world, we shuddered. Sometimes she and I left the boys at home and checked into a local hotel just to get away. We couldn’t always go far because there was school, and I had to be close to home for her brother, but we pretended we were far away on vacation, and read, swam, talked, hugged, and laughed. Really, we detoxed from the cesspool that humanity can be.
When you are not severe enough on the special needs scale, you fall through a lot of cracks. And because you are not receiving interventions, your parents don’t always find out what is happening at school till it’s become really bad. And because you don’t always understand how people are damaging you, you don’t have the emotional vocabulary to go home and say, “Bad stuff is going on. I can’t handle it by myself. Please step in now.” We were collectively very relieved to say goodbye to grade school.
I say a lot of this in hindsight. At the time, I didn’t always know what I was looking at, as the clues wisped by my peripheral vision. Thanks to a very insightful English teacher who saw what I was already seeing, we took the steps needed to get external help.
G is a resilient person. One of the more comical blessings of special needs can be that there is sometimes less awareness of being different. She has embraced her unique world view, found some wonderful teachers in middle school, cautiously put a toe back into the world of peer friendships, and is really fine being who she is.
As for any expectations I may have as a parent, she regularly exceeds them in every way that matters. I have thrown out any metaphorical rule books to embrace being her mom. They don’t begin to capture her survival spirit, her forgiving nature, her humor. And if I have to tell her what is in my heart because she can’t guess it herself, well, that’s life in an autism family. We have to say things consistently, and we have to know what result we want to see before we speak. No dithering! Even so, she is my Ram, my literal minded, punny Amelia Bedelia**. No one could fill her shoes.
In a special needs version of the classics, everyone would engage in more plain speaking. And parents would put aside their elder status and say to their children, “I am sorry I couldn’t always read the signs. If I failed you, please forgive me. You are exactly who you need to be.”
There are no rule books to encompass these moments. Only humility, openness, and a respect that flows both ways.
*Refers to Ram and his father, King Dasharath, in the Hindu epic “Ramayana.”
**Amelia Bedelia is the heroine in the children’s book series by Peggy Parish and later, by Herman Parish. Her main characteristic is that she is very literal, and doesn’t understand figures of speech. Hilarity ensues.