Spectrummy Mummy

Asperger's, Allergies, and Adventures Abroad

Wordless Wednesday 03 Dec 14

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Recoleta SM

Written by Spectrummy Mummy

December 3, 2014 at 3:36 pm

Wordless Wednesday 29 Oct 14

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Halloween

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October 29, 2014 at 11:55 pm

U is for Untruth

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I have two very different children. I mean that in the sense that they are different to each other, but also that they are, or can be, different. Atypical. Not the norm, whatever that is. And just to keep me a even higher on my toes (toe-walking!), sometimes they behave very typically, and that confuses me the most of all.

Lately in our house, we have been dealing with a lot of untruths. Cubby is a gifted story-teller, and has been from an early age. I sometimes question whether he can tell the difference between fact and fiction, so immersed is he in his alternate reality. He’ll even assure us that he is not lying as he states things that aren’t true…such as his assertion one evening this week that his school is teaching him to speak Norwegian.

Back when we were in the U.S. a couple of months ago, a lady at the park started speaking to me in Spanish, and after a couple of sentences revealed that I am not exactly a native speaker, she told me that Cubby had informed her that we came from Mexico (he has never been there) and he spoke English because his nanny (we’ve never had one) is from Australia (again, never been there).

I’m puzzled by all of this, because our real backstory is just as interesting as this one he chose to create. I struggled to find a purpose for him telling a complete stranger this misinformation. A friend suggested that it is just more interesting to him, and our reality, even one that spans the world, is mundane to him. He has been there, done that, and other locations are new to him, and therefore intrinsically more exciting.

Pudding is different. I used to believe the myth that autistic children don’t tell lies, but Pudding has disabused me of that, and many other ‘facts’ about autism over the years. She just doesn’t lie on the same scale as her brother. Her more recent untruths have been more pragmatic in nature. They have a function that is very clear to me. Unlike her brother, I understand why she lies. Often it is for the same mundane reasons of most children: she wants to avoid getting into trouble for something she knows she wasn’t supposed to do, or she wants to get something she wants.

But while easier to understand, and certainly easier to deal with than Cubby’s untruths, Pudding’s simple lies are the ones that scare me the most.

As you may know, Pudding has a life-threatening allergy to peanuts and tree nuts. We’ve known this since she was a baby, and her whole life we’ve taught her that she must always avoid these items, as well as many other foods that look safe, but may contain items that are very dangerous to her. She has been able to say from the age of three that she is allergic, and will sometimes volunteer this information about herself to others.

While she carries an epi-pen, and her school cafeteria doesn’t offer nuts, and her classroom is “nut-free” for snacks, we still rely on her to keep herself safe. An incredibly challenging thing for any young child, but more so in the case of one with the additional mix of autism and ADHD.

Imagine then, how scared I was at this story her aide recounted to me last week. It was snack time, and one of the other girls had cookies. A most covetable item at the best of times, but when compared to the healthy choices I’d sent with Pudding (carrots and cucumber sticks with rice cakes), the temptation had been too much.

Noticing Pudding’s gaze, the girl wanted to share. But what is more, before she did, she actually asked Pudding if she had any allergies.

And Pudding said no.

A lie that could, quite literally, kill her.

In this instance, there were no dire consequences. Her wonderful aide was right there, and intervened immediately. There were no nuts in the cookies (thank you, parents who obey nut-free rules), and we know to continue to reiterate the dangers of taking food we don’t know to be safe.

It is messy, this parenting thing. Allowing our kids to be themselves, develop naturally, and yet keep them safe is the hardest thing to do. And that, my friends, is no lie.

This post is part of my A-Z series. You can read the rest by clicking >here<.

 

Written by Spectrummy Mummy

September 5, 2014 at 3:05 pm

T is for Transitions

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Back to my A-Z, and here comes T. T is for transitions. If there is one thing I know about as mother to a child on the autism spectrum (and one not quite), who have lived on four continents…it is transitions.

I’m always interested in transitions, and the way children and adults respond to them. We just moved again to South America, and to say that my children handled it well feels like the world’s biggest understatement. They have always been, and continue to be very excited by each move. They breeze through goodbye ceremonies, and jump right into new homes, new schools, new adventures.

The hardest transition we ever faced was when Cubby was first born, and we left Europe for a brief stay in the U.S. on our way to Bolivia. We never got there, as it was during this time we noticed Pudding’s differences, that would eventually lead to her diagnosis on the Autism Spectrum.

I remember a low point where we had less than a week for my husband to find a job, for us to find a home to rent, and figure out what services we needed for Pudding, and eventually Cubby too. We were rookies, learning our lessons the hard way.

In the five years that have passed, we’ve learned some supports that help, but yet I see friends apply those same strategies to their own children for smaller transitions, and they still seem bumpy compared to our big ones. At times I wonder if experiencing such a painful transition helped rewire our brains, or at least reframe each subsequent move into something that seemed navigable by comparison.

One of the strategies we use for dealing with tough transitions is to make sure we are entirely open with the children about what to expect. For this last move, the kids and I had to go by ourselves in order to arrive in time for the start of school. For a few weeks, we didn’t know when he would be able to join us, then we finally got a date.

Daddy was due to arrive on Thursday, a fact that we had talked about, written down, added to calendars, you know the drill. So, of course, last night I was dealt the task of having to explain that a general strike in the city meant he could no longer fly in when he was supposed to. And even though they have been anticipating this date, with a few tears from Cubby, and a little repetition from Pudding, they just accepted this new truth. A truth that would have sent me as a child into a full blown meltdown.

Which is not to say that we don’t experience the meltdown. Cubby is a classic attention-seeker, and will use his behaviour to get noticed, if that is what it takes. And naturally, he needs a lot of extra attention during this time. Pudding, on the other hand, reserves her rare meltdowns for one very specific reason: injustice.

She finishes her school at one, although the rest of the school continues until half-past three. The reason is to give her time to get to her therapies, which can’t be provided by school. But Pudding doesn’t accept the reason, and sees only the unfairness of having to leave when all  the other kids (including her younger brother) get to stay.

Interestingly, those who observe her reactions, and don’t know Pudding as well as I do, have been known to use such instances as evidence that she “struggles with transitions.” Nope. She struggles with unfairness.

And unlike transitions, I’m at a loss to help her to deal with these negative experiences, other than offering my empathy and comfort. Because while I hate for her to be so upset, I’m glad that she she has this sense of justice, and expectation of fair treatment. I’m glad she uses her behaviour to communicate what she can’t fully express in words. Such indignation of unfair treatment will serve her well.

You see, there is always a bigger transition ahead of us. Bigger than moving countries- or continents, even- is the transition to self-advocacy. These are tools she will need to deploy for the rest of her life, especially when I’m not around. Or perhaps, because I’m around, but I’m not her voice: she is. 

The real question is: will I ever be able to transition as well as my kids do? 

Spectrummy Daddy, we’ll see you on Friday (I hope)!

This post is part of my A-Z series. You can read the others by clicking–> here<–.

Written by Spectrummy Mummy

August 26, 2014 at 3:05 pm

Posted in A to Z

Reinvention

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One of the great things about the expat life, is you get to reinvent yourself every time you move. And by great, I mean necessary, for me at least. Moving to a new country is a surreal, hyper-real experience, even when you have it done it several times before. I find reinvention to be my coping mechanism.

I’ve been walking a lot lately, which is good for me. In Argentina, I’ve reinvented myself as a walker. Walking is good for thinking, which is good for writing. I have many blog posts in my head, I just need to convert them to type in between walking.

I need to tell you about how South Africa said goodbye to us, and what we did in between here and there, and many, many tales of my kids’ resilience, but this is my blog, so first I’ll talk about my reinvention(s).

I showed an early flair for languages, and some twenty years ago I learned Spanish. But then I was sent to the Lowood Institution where my best friend died in my arms of consumption, and French was the only language I developed. Wait, I’m confusing myself with Jane Eyre again. But for some reason I learned more French, and it covered over my Spanish until it was quite buried.

That French was quite handy in Luxembourg, but not at all useful here, when I try and communicate and this whole other language keeps popping out instead. It is at times like these, I marvel at my girl’s ability to express herself. I know it doesn’t come easily, and it takes a strength I don’t have, but she does.

Though I don’t have that strength, I do need to communicate our needs. Necessity is the mother of invention, so they say. I like to pretend that I’m in some kind of reality TV show. It is of course, absurd that I know so little of the language, so I act like it is a challenge: what can my very basic abilities achieve for me today?

In my first week here, it got me wifi installed in my house, which was a necessity, or I wouldn’t be writing to you now. Miming can get you so far, and sometimes words take you further. I needed a Phillips screwdriver, and that is a thing you certainly don’t want to mime (go on, try it), but when you can’t remember the word “screwdriver” or “tool” it becomes a comedic surfeit of words, words, words.

And if I’m confused why I have to pay when my bill reaches 1000 pesos at the supermercado, even though I have more shopping on the conveyer belt, the explanation is more words than I’m able to process. Hold on, give me five or six months to figure out what you are telling me.

Sometimes my reality TV show has a culinary edge. Instead of getting frustrated at the limitations of the welcome kit (essentials provided by the Embassy until our belongings arrive), I’ll instead prepare the most elaborate food I can, as though competing against myself. Sometimes there are unexpected successes, as I find a way to cook spinach in a way that my kids both eat it for the first time. Or we make empanadas together and remember one of the reasons this is all worth it.

The theme to all my reinventions is facing a challenge. It is okay to be tired, but I’ll never win that way. Today, walking to school for a pre-IEP meeting, I felt a little like David against Goliath, if David didn’t have the slingshot of legal rights outside of the US public school system. But dressing myself in leather boots and biker jacket, I felt like this incarnation might show her strength, even when feeling weak. And just as well, because upon finding that a document about Pudding was being sent to her teachers, I needed to be able to demand a copy even if the school doesn’t normally give them to parents. Nothing about us without us.

Perhaps they aren’t really reinventions after all. Maybe it is more about remembering who you are, how you are, even in a world that seems unfamiliar. Sifting through layers of language, understanding cultural norms and making sure our needs are being met.

Deep down I am who I am no matter where we are. Still, if I were being followed by a camera crew these last few days, I’m sure you’d find it to be very entertaining viewing!

Written by Spectrummy Mummy

August 11, 2014 at 4:07 pm

Wordless Wednesday 06 Aug 14

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Second Grader.jpgKindergartener.jpg

Sorry for my absence, we have been busy (again). Coming to you with my second-grader and kindergartener all the way from Argentina!

Written by Spectrummy Mummy

August 6, 2014 at 12:42 pm

Summer Bucket List

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Image

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.

Written by Spectrummy Mummy

May 22, 2014 at 1:46 pm

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