Spectrummy Mummy

Asperger's, Allergies, and Adventures Abroad

Archive for July 2012

Olympic Spirit

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“The most important thing in the Olympic Games is not to win but to take part, just as the most important thing in life is not the triumph but the struggle. The essential thing is not to have conquered but to have fought well.”  The Olympic Creed.

So, have you been watching The Olympics?  I’m very glad not to be in London at the moment, but I have been watching my fair share of TV.  Unusual for me, because I’m so very not sporty that I can’t normally stand to watch any of The Olympics.

This year though, I’ve been paying much more attention.  I loved the esoteric opening ceremony.  We are proud of ourselves, and we don’t care what anyone else thinks…yes, my children are definitely part British.

Of course we support teams GB and USA, but we also have a soft spot for the other places we’ve lived.  When I watched all the athletes from all over the world, I thought of all the friends we have in far-flung places, and which of these bizarrely dressed nations I would one day call home.

In our house we are particularly rooting for Oscar Pistorius- a local South African athlete who challenges conceptions about disability.  He has a courage, strength and determination that I can already see germinating in my little ones.  Different challenges, same spirit.

We’ve been taking part in our own version of the Olympic Games.  Pudding is setting a world record in the naked trampolining event.  Then we invented a game with pool noodles, a rug, and two bean bags.  Essentially we just bash each other.  The adults can’t leave the rug, but the kids score by getting on there.  They can also sit in safety on the bean bag chair, but getting hit is too much fun to do that for long.  Cubby is a natural.

Sometimes we win just by taking part, our struggles are our triumphs, and we fight well even when we don’t conquer.  And sometimes it is just about hitting and being hit with a pool noodle until you all dissolve into giggles.  That is the kind of spirit that deserves some kind of medal, and I for one am going for gold.

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July 30, 2012 at 5:18 pm

I’m NOT Batman

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Far removed from the terrible tragedy in Colorado, and insensitive media speculation that managed to both diagnose an individual without having met him, and demonize those on the autism spectrum, Batman means something else in our home.

Cubby, like his daddy, has taken a shine to Batman.  He likes other superheroes too, and knows all the real names and those of the villains.  Spectrummy Daddy even made up a superhero story for Cubby, and his alter-ego, The Neme-Sis (get it?).

A few weeks ago Grandma sent him some Batman nightwear (complete with cape) and a Batman action figure.  Spectrummy Daddy couldn’t fit in the pajamas, so Cubby was allowed to keep those.  I’m perhaps married to the only diplomat with a Batman toy on his desk.  Then again, Spectrummy Daddy showed up to the consulate yesterday in his Batman shoes, so I shouldn’t be surprised.  Don’t worry, he doesn’t wear them to his meetings- he has his Batman cufflinks for those.

Because I’m nothing if not an enabler, I taught Cubby to say, “I’m Batman” in the trademark growl.  It is obscenely cute.  It doesn’t matter if he is decked up like the caped crusader- my blond-haired, blue-eyed little bundle of mischief doesn’t make for the most convincing Batman.

Yesterday morning was a hard one for Cubby.  He opened up his bottle of whine before 5am.  Finally Spectrummy Daddy had had enough, and deemed Cubby not fit to wear the pajamas he so covets.

“Batman doesn’t whine,” he told Cubby.

So our very own Bruce Wayne lifted off his pajama top, and patting his belly growled at his Daddy:

I’m NOT Batman.”

That was the first time I actually believed he could be The Dark Knight.

Today he told Daddy that he could his Robin.  I’m not sure where Pudding and I fit into his scenario, but at least I know that when life in our own version of Gotham City gets a bit too much for us, we can always escape to Wayne Manor with a certain billionaire philanthropist.  Hey, my boys aren’t the only ones who can fantasize!

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July 28, 2012 at 1:01 pm

Wordless Wednesday 25 Jul 12

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ImageAll in the details- Pudding’s repertoire is expanding.

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July 25, 2012 at 6:27 am

Where We Belong

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We’re running our own race here

There is nothing like going to a local community event to make you realize that we’re not your average ordinary family.  Today was Sports Day at Cubby’s school.  The 18th annual sports day for this preschool, and most families have been coming here to cheer on the kids for years now.  This was our first time.

Most of the other families have lived around here for a while, and they know each other.  A couple of faces were familiar to me from morning drop-offs, but we were definitely the outsiders.  One mother, hearing my accent, asked where we were from.  Did she mean my country of birth, my husband’s or the kids’?  I could have given her three different answers for a fairly simple question.  We don’t belong here, but you can’t tell that just by looking at us.

Nobody really noticed that Cubby wasn’t trying to win.  He was more focused on what the other kids were doing than what he was supposed to do.  And probably nobody noticed that his muscles tired a little sooner than the other kids his age.  He wasn’t first, he wasn’t last, he did what he needed to do.  He passed.

But those sitting close to us probably soon noticed the five-year-old who is the size of a nine-year-old who was constantly squirming and repeating the same phrases over and over, and twirling hair.  Indeed, when twirling her own hair and mine wasn’t enough, Pudding moved on to the long braids of the lady sitting next to us.  But she doesn’t want to twirl a stranger’s hair, so she asked her name.  “It’s an African name,” replied the lady with a smile.  “Hello African,” responded Pudding.  You can’t make this stuff up!

Pudding doesn’t really pass any more.  Her differences are too apparent, too inappropriate for her perceived age.  Even her actual age.  But if she has realized that, she hasn’t expressed it yet to me.  There is solace in that- I’d rather have my girl unaware than hurting.

This sports day required actual participation from the families too.  There was a mum’s race (I came fourth!), dad’s, grandparents, teachers, brothers, and-yes- sisters.  The groups were divided up into big sisters and little sisters.  Even if Pudding was up against kids her own age or younger, racing isn’t something she really understands.  She has no competitive streak that makes her want to be first to the finish line.  She only “runs” while holding my hand, and even a few years of OT and PT haven’t changed that gallop into a running gait.  There were many reasons for Pudding sitting this one out, but none of them mattered; because I asked if she wanted to run with the other sisters, and she said yes.

She was on her marks, she got ready, but she didn’t go at the same time as the other girls.  I encouraged her and she set off, then twirled around, then galloped on a pace or two.  The race was already won, but for us it wasn’t over.  I could hear the cheering and applause, and I heard it die down.  Pudding wasn’t even half way through.  But she kept going, and I kept cheering.  By the time her gallops took her across the finish line, the next racers were already lined up.

But it didn’t matter.  Pudding was pleased with herself.  I spun her around in victory, and we returned to Cubby and Daddy and we all cheered her on as if she’d just competed in the Olympics, and won.  And right at that moment, I thought about how all of you would be cheering too.  There is a place where we celebrate triumphs that most people don’t even recognize.  Where we don’t stop cheering until every child makes it to the finish line, in their own way, in their own time.  And that is where we belong.

 

 

 

 

Written by Spectrummy Mummy

July 21, 2012 at 6:33 pm

Wordless Wednesday 18 Jul 12

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When the only sound is silence, you think that one of your kids has finally killed the other. Imagine my surprise at finding them learning together. Clearly my work here is done.  You’ll find me outside sipping vojitos.

 

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July 18, 2012 at 5:53 am

Working Mother

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I went to work today, for the first time in seven years.  I’m now a working mother, or a mother working outside of the home for the first time.  I ate lunch today with my colleagues, and only when somebody asked for a napkin did I realize that I’d taken a pile of them, to deal with the inevitable spills that I invariably deal with.  But not any more, during the weekdays at least.

And when I went to the bathroom, I did so much enjoy going alone, yet I still forgot I could use the hand dryer with no Pudding and Cubby around.

But those were the only times I noticed a big change.  I’ve arranged my hours so that I collect the children at 3.  Aside from the fact that I’m wearing make-up and nicer clothes,the kids haven’t noticed a change in routine.  As transitions go, this has been effortless.  I told you I was prepared.

In fact, working as a mother feels so far like, well, working.  It helps that I’m only working 32 hours a week, and it helps that my supervisor is family-friendly.  It helps that I’ve already put trust in other people to take care of my kids.  But I don’t feel at war, with other mothers or with myself.  In fact, my views on the “Having It All” debate are largely unchanged.

I didn’t work for the early years of child-raising because I had the privilege of staying at home.  Yes, we made sacrifices.  We couldn’t afford to visit my family for three years, and things were tight, but having a parent stay at home was an option for us, at least in the short-term.  We were fortunate to have that privilege, I have never felt like I made a sacrifice.

And now, we’re fortunate enough to be in a position when I can return to work, and it can be my choice.  That choice is a privilege many women will never know.  I don’t feel like I’m making a sacrifice.  Maybe because I’ve seen both points of view, I didn’t feel like making a choice between family and work was the right focus…but having the ability to choose really is.

I want my daughter to have these same choices that most of us take for granted.  I don’t know how Pudding will progress.  Autism is a lifelong disability, or difference, or disorder.  Call it what you will, it makes it hard to predict the future.  I can’t say if Pudding will be able to work, or if she will have a family.  Maybe she’ll want both, or neither, or just one.  I only know that we will do everything we can to make sure she has those options, just like the choice was always there for me.  And making that choice available?  That is the real privilege for this working mother.

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July 16, 2012 at 7:51 pm

Q is for Quiet

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And you thought I’d struggle with a ‘Q’ post!  Quiet is not a word I often associate with my children.  They both seem to make more noise than your average little one.  I tend to think of quietness or loudness being a personality trait.  In many ways it seems fixed, but as with all things to do with personality- nothing is set in stone.

I was a very quiet and shy child.  I’m still very much an introvert who likes being at home, and can find busy social events somewhat tiring.  But I’m far less shy and quiet than I once was.  Perhaps some people meeting me now wouldn’t consider me that way at all.  Maybe the social demands on me have required a stronger presence.  Maybe character is really something that shifts depending on the situation.

Spectrummy Daddy and our children don’t tend to be quiet very often.  Cubby talks incessantly around his family and friends, but becomes quieter when he is nervous.  When he first started school, his teacher wasn’t sure he was verbal.  His current teacher wonders if he can ever stop talking.

While peace and quiet is a state I relish, when it comes to Pudding, it can mean something is very wrong.  If she is very upset or overwhelmed, she retreats into herself.  It is agony for a mother to see her child hurting without knowing the cause.  Believe me when I say I prefer her meltdowns to be of the explosive kind.  That way we are at least immediately aware of how she feels, and we can do our best to get her needs met.

Quiet Time

So, partly because it seems unnatural for my family to be quiet, and partly because withdrawal is far worse, we don’t make many demands on the children to be quiet.  Little children are seen and heard, expressing themselves and engaging with us.

But there are times when quiet is necessary, and I’ve realized lately that at those times, Pudding appears to be incapable of being quiet.  Recently at a gathering at the Consulate, Pudding was fine until speeches were being made and I asked her to be quiet.  From that point on, she became disruptive and demanding.  Our community is very supportive, but as they were the only children there, I couldn’t help but feel the focus of unwanted attention.

I tried distracting her with snacks.  She would loudly refuse them, or demand others.  I tired distracting her with books, “I’M READING…PUDDING’S READING…I’M READING A BOOK!” and drawing, “PUDDING’S DRAWING A PICTURE, I’M DRAWING A PICTURE, MUMMY DRAW A PICTURE!.”  The more embarrassed I became, the more she acted up.  Eventually I removed her from the situation, and she immediately calmed down.

I knew I was doing something wrong, but I was too close to the problem to figure out a solution.  Yesterday I raised the issue in a meeting with Pudding’s therapeutic team, who immediately saw where I’d gone wrong, and offered alternative approaches.

They suggested looking at the ability to keep quiet, a real struggle for a child with autism and ADHD, as a skill that she needs to learn.  The best time to learn a skill is not in socially demanding situations, but when everyone is calm and comfortable (including me).  Oh I know, so obvious once somebody else points it out!

Pudding is not in an ABA program, but because the intended result (being quiet) is so inherently unrewarding for her, this was a good occasion to use a positive reinforcement approach.  So yesterday we made a game of it with Pudding and Cubby.  We played “Quiet Time” using a one minute countdown on my phone.  If they managed to keep quiet for the whole minute, they earned a pink smartie (imagine a european M&M, American readers).  Pudding managed it twice, but Cubby was the real winner at this game.  I probably need to reduce the length of time to 30 seconds next time we play, and then increase it from there.

It is too early yet to tell if this approach will work, or if Pudding will be able to generalize it to more demanding situations.  But I like to think that this is a skill she can learn, rather than a fixed character trait.  After all, if I can learn to become more forward and resolute in advocating for my children, that surely means that we can nurture the traits in ourselves that are most useful to us at any given time.

So Q is for Quiet.  A handy skill at times, but not always the most essential tool.  The art of knowing when to keep quiet and when to speak out is a skill most of us keep developing throughout our lives.  I’m certain my children will be no exception.

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

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July 12, 2012 at 10:40 am

Wordless Wednesday 11 Jul 12

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July 11, 2012 at 5:58 am

Adventures with Hello Kitty

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When you are first freaking out about autism, and reading lots of books that freak you out even further, you learn that special interests are very obscure.  Your child will be set up for a world of mockery and ridicule because they have opted to become the world’s expert on stick insects or timothy grass.  You waste some of your worry hours on the fact that you hate insects and are allergic to timothy grass, but Pudding has saved me from this ordeal.  She saved me from a lot of ordeals, actually, by being the exact same child she was before her diagnosis.

Still, Pudding has the most typical special interests of any autist I’ve ever heard of.  For the last 18 months of her life, we’ve been living with Hello Kitty.  Nothing unusual about that for a five-year-old girl.  And lucky for us as a foreign service family, she has opted for a special interest that is about as global as it gets.  Don’t get me wrong, I’m not above begging for someone in Taiwan to send me something through the pouch, but it really is unnecessary.  I can’t think of anything she’d want that she couldn’t get here.  Well, apart from perhaps the Hello Kitty airline, or wine (because who doesn’t want their 5 year-old to be an alcoholic?).

A friend emailed me a couple of weeks ago with some game-changing information: a Hello Kitty store had opened at one of the malls in Johannesburg.  An entire shop.  Of Hello Kitty.  Oh my.

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Lady, if you go around wearing a Hello Kitty apron, you’re just asking for it!

We didn’t really need a store.  You see Pudding has Hello Kitty stuffed animals (including one that repeats everything she says!), board games and plastic toys.  She has t-shirts, sweaters, leggings, nightgowns, swimsuits, lunch boxes, flasks, a variety of bags, hair accessories, and hats.  I’m sure there is more that has slipped my mind.

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While she is wearing Hello Kitty and playing with Hello Kitty, she can watch her Hello Kitty DVD.  As far as special interests go, we’re lucky that she picked a brand that is truly global.  Imagine the trauma of moving your child away from her special interest every tour?

When we go to our local mall (which Pudding loves, but isn’t the one with the new store) we have a few points where we “check-in” with Hello Kitty.  There is the store that sells Hello Kitty jewelry that we look at, and another that sells bags and accessories.  There is the Build-A-Bear shop that features a Hello Kitty which we’ve somehow managed to avoid, and Woolworths selling Hello Kitty chocolate and party supplies.

I kept the Hello Kitty store secret, knowing full well that if she knew it, she would forever more only want to go there.

But after meeting Phineas and Ferb, it was her turn.  We didn’t tell her that was where we were going.  I’d aimed to take photographs of the utter delight on her face, but as soon as Pudding saw the shop she put the hyper in hyperactive and raced in ahead of me.

Fortunately for their sakes, most of the delicate items were behind locked glass, so Pudding contented herself with touching the shop assistants Hello Kitty apron until I rescued her.  I knew there would be no getting her away from what must now be The Best Place In The World without actually buying her something.  They didn’t have the bento box that Pudding has recently become obsessed with on YouTube, but they did have an egg shaper, which I bought to celebrate the fact that Pudding is no longer allergic to eggs.

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Good luck gettting me out of here.

We also bought a plastic cup, figuring that it would last longer than the day she had a Hello Kitty china mug.  It didn’t even make it that long.  Any suggestions for what to do with a broken plastic cup?  maybe storing her paintbrushes to combine another special interest of hers.

Still, nothing lasts in this world, and that is a lesson for all of us.  Including that feeling that I’d treated the children fairly- Cubby began demanding equal treatment until we caved in and got him a Captain America car.  Ping-pong, you see?

And all of this rampant consumerism explains why it is necessary for me to return to work.  I’m quite looking forward to it- as long as it doesn’t get too much in the way of my special interests.

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July 10, 2012 at 10:35 am

Adventures with Phineas and Ferb

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It is tough being the sibling of a child with special needs.  It is even tougher if you have some special needs yourself, in a similar-but-different way to your big sister.  Ask Cubby.  It seems like his formative years have been spent watching his sister in therapy, then having to go through the same thing himself.

So when your world is chaotic, and you don’t always have as much attention as you like, you tend to attach yourself to something that you really care about: a special interest.  A thing that marks you out from others.  A way of expressing yourself.  A way of being yourself, independent of all those other demands.

Cubby used to adore Thomas The Train/ Tank Engine, but as he has developed, he has opened up to other interests.  He likes cars (and Cars), super heroes, and Phineas and Ferb.

Although it is shown on South African TV, I had no idea Phineas and Ferb was big here until I heard they were coming to our local mall a couple of weeks ago.  I knew what we were going to do that day- we were going to meet them!

I collected Pudding and Cubby from school, and explained to them what was going to happen.  I explained that there might be bright lights and loud noises.  Probably lots of people and waiting in line.  They still seemed game.

When we got there, I knew it was an experiment in sensory overload.  We waited gingerly on the periphery as I tried to figure out a plan of action.  The queue was pretty big, as families waited in line to get their photo taken with Phineas and Ferb.  It was free, so some older kids had wised up to this, and kept cutting in to go round and round again.

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All fun and games for Phineas and Ferb until we spectrummy three turn up.

Cubby made it clear that he was not going home, and Pudding seemed to be okay too.  We joined the line.  I tried to make as much space around us as possible, as we don’t like being touched by strangers.  That isn’t the majestic plural either- I hate it every bit as much as my kids.  Of course, some scheming local kids decided to take advantage of the space around us by filling in the gap, but as long as we made it (eventually) to the front, I wasn’t too concerned.

One of the unfortunate aspects of hypotonia, is that Pudding and Cubby’s muscles tire easily (except when I want them to tire out, of course), which makes standing around for a long time particularly uncomfortable.  They decided to lie down, which didn’t exactly help with the whole people cutting in front of us thing.  Nor did it do wonders for my stress levels, but we somehow made it to the front unscathed.

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What, you are tying to touch me back?! 

 

I had assumed that Pudding wouldn’t want to actually meet Phineas and Ferb, but she surprised me by telling me that she would- and that she was going to touch them.  For a tactile sensory-seeker, there is no concept of not touching giant felt people.  What she hadn’t counted on, however, was that Phineas also wanted a hug/ handhake/ high 5.

No.

Only Japanese cats with no mouths would be granted such largesse.  As she explained to Phineas, Ferb, and the rest of South Africa:

“NO YOU*DON’T WANT PHINEAS AND FERB- YOU* WANT HELLO KITTY.”

Pudding still has a lot of trouble with her pronouns, but I don’t discount the possibility that she was actually commanding the promoters and people of Johannesburg to replace this duo with her esteemed special interest.

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You might thing this is bad photography, but I swear this is what it looked like.

 

A couple of women rushed on to the stage to help out, but unless I wanted things to get really out of hand, the only way to calm things down was to scoop Pudding up and remove her from the stage.  I was going to let Cubby have his moment!

I left a bewildered Cubby to hold hands with his heroes and have his picture taken.  It was awesome too- but I can’t find it anywhere.  Afterwards we found some beanbags to crash on.  The kids got the proprioceptive fix they needed, and after a few moments, we were all regulated again.

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Take that- sensory overload!

 

We were all calm enough to draw on special Phineas and Ferb paper.  Again, Pudding chastised a confused staff member for not having Hello Kitty paper.

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Ooh, you can see his photo in this picture- told you it was a good one!

All was well.  My breathing had returned to normal.  Pudding decided to tell me then that it was,

“…Pudding’s turn.  Want to go to Hello Kitty now.”

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She knows what we’re going to do today!

And you know, she was right.  Because it is tough being the sibling of a child with special needs.  It is even tougher if you have some special needs yourself, in a similar-but-different way to your little brother.

In our never-ending game of ping-pong, in which we parents are the ball- it was Pudding’s turn to be served.  I’ll tell you about that tomorrow.