Posts Tagged ‘asd’
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!
We have another milestone, friends. Pudding is learning to tell the time. Pudding had no interest in learning how to tell time for…well, for some considerable time. We’d tried using her special interests, visual timers, crafting our own clocks, workbooks and ordinary telling time books, toys, apps, and any possible thing I could think of.
But it wasn’t her focus. I was looking at seconds, minutes, and hours, and Pudding was more fascinated by days and months. While I was busy in the details, Pudding once again took me by surprise and approached time from another angle.
Last June we met with a new doctor. Pudding asked him his birthday (and will now always remember it), and then she let him know what day it fell on. And then surprised us by knowing every date we asked her. She appears to have an exceptionally accurate mental calendar (and seems equally frustrated that the rest of us don’t!).
So now, days and months not only had meaning, but were meaningful to her. We add our activities to the calendar as much as we can.
But language, as always, was still confusing. As we cuddled in bed at the end of the day, Pudding would ask, “What are we going to do today?”
So’d answer that we would do nothing more today but go to sleep. And tell her what to expect for tomorrow, as much as we ever can.
One day last month, Pudding rose in her early-bird fashion, and reminded us that she was going to a party. Ah yes, I told her, but not yet, not for a long time. Later. At 3 O’Clock.
And for some reason- that may or may not have to do with delicious birthday cake- this time, she wanted to know more. I’d show her my clock and tell her when the little hand was counting down the hours…8,9,10,11,12,1, then, 2, then time to go.
We found a Hello Kitty watch that happened to have hands with different colours. She wanted to wear it, and would answer when I randomly asked her the time.
This week, Pudding was finding school tougher than usual. On Monday I collected her earlier, but after that, I asked her aide to use this new tool of time to help her get through the day. I’d remind her that I’d be there at 1, and she could see on her watch how close that would be. Her anxiety dropped away, and she could once again focus on her schoolwork. Not with ease, but with practice.
This incredibly useful tool that gives her more control to navigate her day independently. She doesn’t have the precision yet with telling time that she does with knowing dates, but I know we’ll get there soon. As useful as it is, this isn’t a milestone that could be hurried along the way. But like all the others, we’re getting there in her own time, in her own way. And not a second, minute, or hour before we need to.
We’re now 9 days away from the mega non-stop flight in economy from Johannesburg back to the USA. A flight so long and tortuous, I need a distraction! So instead, I’m thinking about getting to see old friends, and spending time with family. Still, we have two months of no school, and an awful lot of free unstructured time on our hands.
Spectrummy Daddy will be occupied with language training, so we’re looking for things to do. Luckily, there are lots of free museums to get reacquainted with, and I’ve found a park and a library within walking distance of where we’ll be staying.
But what else? My kids have spent most of their lives living on other continents, and as I’m foreign-born myself, we could probably use a tip or two about how to spend our summer. We were lucky enough to be able to take our two R & R trips to the UK this tour, so we got to eat cornish pasties, take tea at Holyrood Palace, visit Stonehenge, and roman baths, and eat fish and chips on the beach. So now we have to even things up and remind them they’re half-American again…just before they get whisked off to South America!
There is one all-American thing I know is at the top of my list: making s’mores. And this time around, I don’t even have to worry about making them from scratch this time around.
So, please, give us some tips on what we need to do, and I’ll add them to the list. Extra points if they are sensory-friendly and accessible to all (July 4th fireworks are probably still a bit of a no-no for us).
Here we go…
1. Make s’mores
2. Kinetic Sand, suggested by Lisa S. on the Spectrummy Mummy Facebook Page
3. What To Do With Kids In Washington D.C., huge list linked by Emily.
4. Mom in Two Cultures has some great ideas for sensory boxes: How To Survive Winter Vacation.
5. Buzzfeed has great list of 33 Activities Under $10 to Keep Your Kids Busy All Summer.
6. American History in a box from After School Plans.
7. America: The History of US DVD set.
8. Pudding would definitely add another meal at the American Girl bistro.
9. Drink a malt in a diner.
10. Veggie chili-cheese fries from Ben’s Chili Bowl
11. Watch the Nats play baseball, and constantly remind Spectrummy Daddy that it is just like rounders.
12. Ride the carousel after checking out the Smithsonian museums.
13. Take in a county fair or town festival.
14. Enjoy a movie at a drive-in – I still can’t believe I have never done this!
15. Disney! Our home leave point is Florida, and the grandparents have already promised Pudding a repeat breakfast with the princesses, and pirates for Cubby. Disney has changes its policies for guests with disabilities since we were last there, so I’ll be sure to report back on our experiences.
Two weeks until our big move, and I’m in the midst of what is by far the most laborious task of moving: sorting out the paperwork. This time around is extra challenging. Previously when we’ve moved, our air shipment has followed us around a week later, and the rest of our belongings our shipped after 2-3 minutes.
This time though, we’ll be heading to the states for two months, and even after we arrive at our next post, we can’t receive our belongings until after we have been accredited…some 4-6 months later. Which means we could be looking at 8 months without the filing cabinet that purports to document our lives.
So you see, the challenge of forgetting to put the right piece of paper in our luggage could be pretty critical. The problem is, paperwork is never critical until you don’t have the right one. Marriage and birth certificates are always essential. As is my naturalization certificate and our immunization records. Do I really need that reference from 10 years ago? This paperwork is taking up too much space in our already crammed luggage, and weighing us down.
And then the most critical, but cumbersome paperwork of all: the kids’ psycho-educational reports and school paperwork. Five years and two kids is easily filling two boxes, and yet, hardly capturing them at all. Because what kind of evaluation can ever capture their joy, resilience, sensitivity, and adventurous spirits? Qualities that aren’t necessarily required in the classroom, but certainly are helpful outside of it.
As I read through Pudding’s past reports, one thing keeps striking me. Each contains a sentence along the lines of “…doesn’t reflect an accurate measure of cognitive ability.” And yet, international schools, not bound by law to accept children with disabilities are always searching for those cognitive skills as evidence that a child can measure up to their peers academically. It is the reason we keep testing- to check that we are not failing her, tweaking her supports and interventions as necessary.
But if they aren’t an accurate measure…aren’t they just paper? Weighing us down.
A few weeks ago, we got some different results. Pudding’s support teacher administered the Woodcock Johnson III. A useful measure for us, because she has had this test before, and comparing Pudding to her own self has always been more meaningful than comparing her to her peers- at least in terms of deciding if our interventions are working as hoped.
These new results, however, show a dramatic improvement in her written language skills. Her mathematics and calculation skills are average, but compared to her peers she shows superior academic skills when it comes to reading, writing, and spelling.
And these results are truly amazing, more evidence that inclusion (with the right supports) is working for her. Evidence that we need to have, in order to convince international schools that she has a right to be there.
But they also add to the confusion. How will we support these strengths as well as her weaknesses? Or were we somehow already doing that without trying? Who knows. It is hard to think about these things without it adding to this constant weight- which always feels more burdensome at moving time- are we doing the right thing?
Like every other piece of paper, it captures just a tiny aspect of her. It is no more a description of her than anything else that goes in the filing cabinet. One interesting fact to add to the others, just like that her birth certificate is written in Luxembourgish.
While we ponder on the data, I’ll do what I have to with this the same as most of the other papers- scan it and save it in digital form. That way we can keep it, consider it, yet not let it weigh us down.
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.