Archive for the ‘autism’ Category
When you don’t like being touched by strangers, but you also kind of want to meet the President. Pudding did an awesome job!
One of the great things about international schools (and the reason I push so hard for them to admit Pudding), is that every kid there knows what it is like to be different. Sometimes we have had excellent teachers who worked hard to include Pudding. Sometimes, the kids themselves have stepped up. The last year here has been challenging in a number of ways, but one thing I never had to worry about was other students not accepting Pudding.
We don’t have any explicit social skills teaching here, for better or for worse, but Pudding does have an excellent aide to help her navigate the social world at school. Though her methods for interacting are sometimes perceived as unusual, Pudding has always been socially motivated. And where she has a will, she will always find a way.
Soon she had a close set of girls in her class who became friends. In class they would sit around her. At concerts, sports days, and assemblies they would support her, in a non-intrusive and accepting away. They found her level and they met her there. Her friend Ana* was a natural at this, perhaps having observed her mother, an occupational therapist who had previously worked with children on the autism spectrum.
Last year Pudding wasn’t allowed to participate in Spanish classes, which was a great source of frustration for us all. When I would collect her after lunch, she was often visibly (and audibly) distressed at having to leave her friends. One day her friend Sofia* drew her a picture of the two of them to let her know she was missed too. And so began a correspondence between the two, that continues to this day.
On days that Pudding had a hard time leaving, she now began sending notes to the kids going to Spanish lessons. And here is where things get really special- they sent them back. Concrete reminders that she was accepted and missed. She belonged. I would often find caring notes and pictures from kids in her grade I had never met before. Her ability to connect with children even beyond her close set of classmates.
Sometimes the acceptance took a while longer, but resistance is futile. Pudding took a shine to Cho*, a boy in her class last year, and he was pretty intimidated by the strength of her not-so-subtle affections. Over the course of the year, he went from avoiding her to becoming a good friend.
One of the bad things about international schools, is that most children who attend them do so on a temporary basis, like us. So recently we had to say goodbye to Ana and Cho. It feels no exaggeration to write that Pudding was heartbroken. Pudding worked through her feelings by sending notes.
In the meantime, Pudding’s friendship with Sofia continued. The two progressed from sending notes and pictures to small gifts and tokens. At least once a week, Pudding would come home from school with a gift bag from Sofia, and she would find or make items for Sofia in return. In time we have managed a successful play date, and both Sofia and Pudding are looking forward to the next one.
But she still misses her friends who have moved on. When I mentioned that another mother was going to visit Ana and her family her native country, Pudding knew exactly what to do- she would send gifts to go with her. She carefully selected items, wrapped them in paper she decorated herself, and sent them to Ana. I just heard today that Ana was delighted to receive her present. She was sad that her friends in Argentina had forgotten her, and Pudding’s gift was a concrete reminder that she is loved and missed.
The school has allowed her to attend Spanish lessons now, and she keeps finding other ways to connect with new friends. Her ways aren’t always conventional, but her sentiment is sincere and unmistakeable. Every effort is a gift.
*Not their real names. Neither is Pudding, in case you didn’t know!
It seems every year, at this time of year, I’m torn. It is World Autism Awareness Day. Again. Our fourth since Pudding’s diagnosis. Those years have seen a shift in me, the way I perceive autism, and the ways I want the world to acknowledge this day of awareness, or this month of acceptance.
It has been a quiet few months on my blog, but a busy few months in our lives. We’re facing another international move, another continent, and the process of withdrawing from one set of supports, and establishing a whole new set. We’re reevaluating what works and what doesn’t. What is responsible for her progress, and what else we could add to the mix to enhance it.
And yet, for a time of such changes, life has been incredibly stable. For the first time in years, I think our family doesn’t seem so different after all. We work, go to school, read books, go swimming, go on vacation. We live, just like the rest of them.
Perhaps because we have found (or created) a place of inclusion and acceptance, I don’t feel the fire of awareness that burned me these last few years. I don’t feel the need to light my workplace up blue, nor even my home. Blue isn’t our colour any more.
This awareness thing, it burns on, even without my kindling. Here in South Africa, it is more talked about, more public each year. For the first time, Cubby’s preschool became involved in World Autism Awareness Day, and he was asked to dress in blue, and send in a donation to Autism South Africa. And all would have been well if it ended there.
But in his eagerness to tell me his duty, he mentioned that the money was needed for, “the children who are sick with autism.”
And that was when the awareness hit me again. The awareness that if I’m not the one talking to my children about autism, they’ll get their messages elsewhere. And while those messages may originate with the intention of fund-raising, or raising the charitable profile, they aren’t the right ones for us. Those messages are hurtful, not just for my child, but for the adult she will one day grow into. To a community that she already belongs to.
My girl isn’t sick. She isn’t even all that different, or her differences aren’t that great. Are they? She is just one of us. One of the things I most appreciate is how happy she is in her own skin. She loves who she is, and she dares all around her not to feel the same way.
One day, inevitably, she’ll become aware of her differences, and how the world perceives her because of them, and I need to make sure that I am always aware of what messages she receives, and that we are giving her the right ones. Even when I don’t feel it is necessary, I’m aware that it always is.
Tuesday was a really hard day. We haven’t had a break in a while, and I was itching to escape. I booked a night away at the weekend, but it has been a relentless run of a couple of months without stopping, and one night away seems like too little, too late.
After another draining day at work, I collected the kids from school, and got ready to head back out- Tuesday evening was the back-to-school open evening for parents at Pudding’s school. No time for dinner.
To say I didn’t feel like going out there would be understatement. The school is a 45 minute drive at the best of times, and after dark in Johannesburg? Not so much the best of times. I try my best to avoid ever driving alone at night. But Spectrummy Daddy was staying with the kids, and I felt like I couldn’t not go.
Traffic was even worse than usual. I left at 5:10 to be there in plenty of time for a 6:30 start, but I soon realized it wasn’t going to be enough. All in all, seven (7!) traffic lights were out on the busy route, and not one of them policed. I turned on the radio only to hear that the alternative route by motorway was in the same condition. As day turned to night, and gridlocked in traffic, I felt a growing sense of unease. My frustrations darkened my mood further, and I let myself go…there.
There is where I imagine an easier life. Where we live close to family and friends, and I can count on them to give us a break when we need one. There is my kids going to a local school and growing up with the same community. There is building a life for us, and living it- not having to do the same thing over, and over, in far away lands. There is easy. Here is hard.
My legs were cramping from riding the clutch for so long that I almost missed driving an automatic. I did my best to avert my curious gaze from the casual prostitution happening at a particular traffic light where I idled for too long. I wanted to call my husband and tell him I was done with here, with this whole Foreign Service life, but I know better than to use a Smartphone here while driving alone in the dark.
Finally, finally, at just after 7 pm, I arrived at the school.
The Director saw me first, and gave me a friendly greeting on first name terms. Next I saw the mother of a child who was in Pudding’s class last year. We hugged, and I started to feel better. Next I got to check out her new classroom, where she’d left me a note asking to check out her “portit.”
I left her a note in return, then got to check out her new classroom, taking note of the many accommodations. As Ms. A, her new teacher had previously let me know- these supports are actually beneficial for all kids, and having them available to all ensured that Pudding isn’t singled out. I felt all my tensions slip away. My girl, she is right where she needs to be.
Next I got to meet Pudding’s art, music, and PE teachers. I had to smile as the new teachers shifted from polite interest to excitement as they found out I was Pudding’s mother. That kid really is a rock star, and I loved hearing all the anecdotes: such as Pudding turning on the music in class- the music teacher convinced it only happens when she talks for too long! Yes, that absolutely sounds like her.
Though it was getting late after a long day, I couldn’t resist popping in to see Pudding’s kindergarten teacher, who was in the middle of reassuring a new parent that her child (who had some differences of their own, but not like Pudding’s) was in the right place.
I couldn’t agree more.
The drive home was just about the complete opposite- I practically flew. What was I even thinking on the ride out there? Of course this isn’t easy, but she is where she belongs, and when we move again, we’ll start up a whole new village.
Here or there, it doesn’t matter. We are always right where we need to be.
First day of First Grade, complete with social story in her hand. First day for Pudding, at least- the rest of her classmates started last Wednesday, but we were still quarantined after the operation. Though I’m anxious to know how her day went, I know she is in good hands. Her new teacher emailed me to say she’d not only read my last post, she’d pinned it to her wall.
“We are all different and we all learn differently.”
Amen to that. I’m glad Pudding is back where she belongs.
Pudding is about to start first grade in her mainstream school. She is returning after completing kindergarten, so many things will remain the same, but there are new challenges for her to face. Most importantly, a new teacher. She asked me to tell her about Pudding, so here I will try…
1. She is always trying her best
Always. It may not seem like it. Especially at 3 am, it can be hard to see it, but she is aways trying her best. She isn’t lazy, or naughty, or clumsy. She makes every effort. Praise her efforts. Rejoice in her successes. Never punish her if the results don’t match her peers. She is trying her best. Always.
2. Make her comfortable
Sometimes you can’t tell she is trying her best, because she is trying to get comfortable. Getting comfortable for her could be a lot different for her than it is for you and I. Comfort needs to be on her terms, and you might have to try a few things out before you both figure that out. Does she need to be away from the bright light coming in from the windows? Does she need to be seated close so it is easier for her to hear you amongst the classroom noise? Is somebody doing garden work with loud equipment? Does she need to get up and move? Perhaps a stint in the sensory room. Try and make sure her every sense is satisfied, and you’ll have a much more comfortable learner. You’ll even find she tolerates more if you allow her to be in control.
3. Ease her anxiety
This one is easier said than done, I know. Let her be your guide. We’ve read the social story all through the break, and she is familiar with the school, but there will be changes to her routine that take her out of her comfort zone. She knows when she has had enough. Respect that, and know that if she trusts you, that is already half the battle won. When she gains confidence, she is bold and resilient. If she is pushed into doing something, she is scared and stubborn. Let her be your guide, and she will push herself harder than you could imagine.
4. Speak her language
There are no shortcuts here, I can’t really give you a phrasebook in Pudding. Communication will be a struggle until you figure out the idiosyncrasies of her language. You’ll get to know her quirks. She may reply ‘no’ if you ask if she is okay, and ‘yes’ if you ask if she is fine. If she is struggling to process something verbally, try a different way. Always respect her no.
5. Listen to your own language
What you say in the heat of the moment will echo in her heart. I’m working right now on assuring her that her writing isn’t ‘ugly’ and that she isn’t ‘clumsy.’ Thoughtless expressions like this resonate with her. She’ll repeat them to me, but worse than that, she’ll repeat them to herself for even longer. Let your lasting testimony be words that build her up, rather than knock her down.
6. Give her time
I mean this both literally and figuratively. Remember that she is taking in a lot of other information at the same time as your words, and these need to be decoded before she can respond. Give her a few extra seconds to process a question or verbal command. Better still, provide visual cues to assist her interpretation. If she doesn’t seem to pick something up, try another approach until you get the right one. You will.
7. Presume competence
Believe in her, and she’ll show you how right you are. Do otherwise, and you’re both doomed to failure.
8. Help her to belong
She is an amazing, fascinating, beautiful, kind, brave, multi-faceted little girl. She wants nothing more than to belong in her classroom. Help other classmates to understand her value, and interact with her in a positive way. Not just for Pudding’s sake, but for their own too. Sooner or later, all of us will feel that we don’t belong. Teach them that everybody does.
9. Embrace the special interests
Yes, you’re going to have to learn to love Hello Kitty. Special interests can be a weapon or a tool, depending on your approach. See Hello Kitty as a way of cutting through other distractions and helping her to focus. You can count the Hello Kitties, write stories about them, paint pictures…the list goes on and on.
10. We’re here
We aren’t going to tell you how to teach, but we can tell you how to help her learn. The most important thing is that the two of you develop your own relationship, and you learn from each other. Trust me, I’m still learning from my girl, and I’m constantly amazed at all she has to teach us.