Archive for April 2013
I’m not worried.
Pudding is coming up to the last month of Kindergarten. She has been supported, praised, held and loved. And now it is time for her to move up to first grade.
I’m not worried.
She has made friends, in her own way, and those kids have accepted her and liked her. Perhaps some will stay in the same class with her. Maybe she’ll make new friends. I’m not worried.
Her current teacher is arranging for us to meet the next one. She will prepare social stories and prep Pudding , and maybe even the new teacher, as best she can. I wonder if she is worried. I’m not.
Just as we’re looking at the next step with Pudding, our eyes are also a little further on the horizon. It isn’t just next year we have to plan for, in the same school, but our next move. Our next country. Maybe even a whole new continent.
And still, I’m not worried.
Because I know she can do it. I’ve seen her, time and time again rise up to new challenges, and develop resilience, confidence, and the skills she needs to succeed. I know now, I know, that with time, supports, and preparation, she is equal to anything.
I think I knew it even before we moved to Johannesburg- this was just testing our hypothesis. Being prepared to run other experiments if we didn’t succeed the first time. Knowing that there is always another way…we just had to find the best way, for her. And we did.
And we will again.
I’m not worried.
I’m ready. Just like my girl.
Take grandparents for a lunch with a difference…
you get to feed three very special (and very hungry) guests…
Take a LOT of butternut squash. Even this doesn’t come close to the almost 800 tons an elephant can consume per day!
Pudding conscientiously removes all the seeds…
Have Grandpa hold on just in case…elephants are vegetarians, but they are VERY hungry and impatient for their butternut squash!
We were traveling in the car to a village called Clarens for the weekend. The kids’ grandparents have been visiting, and Spectrummy Daddy thought his parents would like to go to this artists’ haven in a valley in the Free State surrounded by mountains. I agreed, because I thought is sounded like heaven for all of us. It was.
But we were late setting off. I had a work event that day which included Spectrummy Daddy getting hit in the face with a whipped cream pie (I have a weird job). The event had run late, and then with picking up the kids and getting stuff ready for a weekend away…later still.
We finally set off and hit all the rush hour traffic. I was getting panicky, because much as Johannesburg has street lights and paved roads, that wasn’t going to be the case where we were headed, and this just isn’t a safe country to be driving at night. Especially with all the men-folk in a different car with the GPS.
Actually, we did have Cubby with us in the beginning, though I’m not sure he counts as a man yet. He wanted to be in the girls’ car at least. As we crawled along in the traffic, I noticed Pudding was the wrong kind of quiet. I looked back and her face confirmed what evidence supported a few seconds later: she was car sick.
Pudding has been car sick a few times before, but this was bad, and it was already getting dark. We found a small shopping center off the motorway, cleaned up as best we could, changed clothing, and allowed Cubby to switch back to the boys’ car, which had become much more appealing by virtue of being vomit-free.
Traffic was even worse as we got back onto the motorway. We inched along, and with cars cutting in and out, were positioned further away from Spectrummy Daddy and the rest of the gang in the boys’ car. I was trying my hardest to keep their car in sight. I knew how vulnerable we were without a GPS, especially as it got darker and harder to navigate.
I was more concerned with Pudding getting sick again, and kept checking my mirror to see that she was still okay. I barely had time to react as a white car swept in from the side, almost hitting mine in his attempt to enter the motorway.
I was furious. Already upset from the turn our trip was taking, this car had almost caused us an accident before we’d even left the city limits. But feeling vulnerable already, I tried to keep the road rage in check, I brought the car to a halt so it could enter in front of me without hitting. I didn’t need to lose what was left of my cool.
But the man in the white car had turned back to me and was gesticulating, but I didn’t understand what he was saying. He is saying words too, but I can’t hear them, and the movement of his lips means nothing to me. I doubt he is speaking English.
Then he started clapping at me…but slowly. The hairs on the back of my neck were raised. He is starting something! We’re stuck in this traffic, and this guy is trying (and succeeding) to intimidate me!
Or is he?
I can’t understand his gestures AT ALL. Is he being apologetic? Does he feel bad that he almost crashed into us and is saying so, but there is a cultural divide? Is it possible that the slow clap could not be sarcastic? And a woman is in the passenger seat, maybe I’m getting this wrong.
So I don’t react at all. I don’t smile. Or nod. I don’t shake my head. I keep my eyes focused ahead as though I’m oblivious. The traffic is bumper to bumper and not much safe space to manouever myself anywhere, but if he stops, if he is going to get out of the car to hurt us, I’ll pull off onto the hard shoulder and speed my way around. I’m mentally prepared for highjacking.
But for now, I just need to remain calm and alert. I don’t need to overreact.
Yet this man seems desperate for my reaction. He won’t stop with his gesturing and clapping. Then his wife gets involved, doing the same thing. And it is dark, and I’m not sure where I’m going, and my kid is sick, and I can’t see my husband’s car, and I’m scared and WILL YOU PEOPLE JUST STOP TRYING TO PROVOKE ME???!!!
And then the wife works it out. I don’t understand! So she tries a different gesture, and I breathe a sigh of relief as she chooses a thumbs-up sign, one that even a white western woman like me would be able to understand.
And I do. With a large smile I return the symbol, and the man and his wife do the same and we are all smiles and thumbs and nobody gets hurt. We move on. Slowly.
We crawl on into the traffic and a night that gets darker and darker. I have hours of driving to reflect on the incident with the white car and my reaction to it. I wonder if this is how it can be for Pudding- when you struggle to understand body language and gestures, when communication is both basic and foreign at the same time, does she feel this afraid? Does she misinterpret smiles as threats? If an olive branch looks like a loaded gun- how do you ever trust this world enough to make relationships in it? I’m profoundly aware, once again, that if I faced Pudding’s challenges, I would be curled up in a corner and refusing any interaction. She takes my breath away with the simplest of actions.
When we finally get there, it is Pudding’s turn top be anxious. She won’t let me go out of sight in this unfamiliar place. I try to calm her with my words, and then abruptly realize that she won’t be able to interpret them if she is already feeling vulnerable.
So we climb into bed together, and I offer her my hand. She recognises the gesture, and moments later falls asleep, her hand still holding mine. One sweet gesture at least, we both share and understand.
I’ve been thinking a lot about this month and what it means. Thinking, but not really finding the words to write about it. I’ve read many articles and blogs about how we don’t need autism awareness now, only acceptance. I’ve read about people lighting it up blue, refusing to light it up blue.
The first World Autism Awareness Day took place when Pudding was just a few months old. It came and went without me giving it any thought. I was an outsider.
Sometimes I still feel like an outsider. Perhaps it is all these years of living as an expat- I don’t seem to fit in even where I’m supposed to belong. Even when I’m fully in agreement with someone’s perspective, I seem to see another side. I’m divided. Conflicted.
I have my reservations about the Light It Up Blue campaign. I’m concerned that Autism Speaks is speaking without listening to autistic adults.
And yes, what good is awareness without acceptance?
But what if there is a fundamental lack of awareness? What if, instead of the right to a free and appropriate education, schools (even private, special needs schools) refused admission because of an autism diagnosis? What if there are barriers here that individuals and families have to face that I will never even understand, coming from a whole different world.
So when we lit up blue, it was in a spirit of solidarity. Less about the charity that initiated this campaign, and more about how autism has connected me to people in this beautiful country who I would never otherwise have known. Like my friend who started a charity from her living room, because she knew that there wasn’t going to be one if she didn’t. Or my friend Di– unable to find a school to meet her son’s needs- opened her own!
Or people whose lives have been touched and forever changed by knowing our daughter. Her beloved teacher wrote to us this week:
I just can’t tell you how much of a privilege it is to be Pudding’s teacher (or Pudding being my teacher?)- she is a shining light. Today as we got ready for Show and Share, she somehow got herself ready to talk to the group before we had even had a chance to choose who went first. She had her picture of a spider (in black – no sign of pink or Hello Kitty??!!!?) that she had drawn as she got to school this morning and put on the show and share table before assembly. She is better at planning her day and being ready than anyone I know. She then lapped up the limelight while she showed her classmates her picture and waited for the applause. How things have changed!
She continues to surprise me and teach me, but most of all she makes me smile.
Happy World Autism Awareness day! Pudding has made me aware of so many things and I am so grateful!
And I think about one of my local colleagues who came to me today realizing that as I talked about my daughter, I could have been describing his. Through awareness coming to understanding and acceptance.
And beyond South Africa. I think of other people I’ve met through this blog, all over the world who are my heroes, my friends, my community.
My girl wouldn’t shine blue. She is all pink. But she shines.
For me it is beyond a campaign, beyond a charity, beyond one country. I think of a whole planet with lights scattered all over. Some of them may be clustered together, some may be the only light around. We shine together.
Maybe I don’t really fit in, but I still know I belong. That might be what we all really need from this month.