Spectrummy Mummy

Asperger's, Allergies, and Adventures Abroad

Posts Tagged ‘special needs

Mother Like Me

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After yesterday’s post, I had some people question why I didn’t react more to what happened during our flight.  It is a valid question, and one that had whirled around my own head ever since Saturday.  You see, my instinct was to protect my children.  Adrenaline was coursing through my system, and my body felt like it needed action.  My brain even pictured the various actions which would have satisfied it- all were physical, and all of them would have landed me in trouble with aviation security.  But I wasn’t thinking about that.

I was thinking about what the children would do if I raised my voice, or had a physical altercation, or even moved to argue face to face with the man in front.  Pudding had already had a meltdown over the change of seats.  A meltdown during which she became violent, briefly clawing at my face with her fingers.  Pudding is not usually an aggressive child, but she already felt threatened, and was lashing out. And this was with me being calm.

If I get worked up, if I raise my voice, if I give in to strong emotions, it is absorbed and reflected back at me by two people who need me to stay in control.  That isn’t to say that I never get angry, or I’m always in control of my emotions, but I do know that when I explode, so does everyone around me.  And I really didn’t need that.  Nor did the rest of the passengers crammed on to that painfully full flight.

Well, all apart from one, that is.

Before I actually confronted him, calmly, I’d spent several hours with Pudding and Cubby sleeping on me, peacefully oblivious to the barely-contained rage I was feeling.  Any parent who knows this forced calm- and I’m certain there are a few of us with children on the autism spectrum- know that this inertia is a hundred times more difficult than acting on our feelings.

We do it, because we can.  They can’t.

We can take a deep breath, calm ourselves down, refuse to let things escalate.  My kids don’t know how to do that yet.  They are learning, and like with many of life’s lessons, they need them modeled time and time again.  Even when there are jerks within hitting distance who totally deserve it.

Now, maybe you have children who don’t follow your every move, hear every word you say (even if they conveniently don’t pay attention at times), or detect every change in your pitch.  That way you don’t risk the same consequences.  Maybe you haven’t had years of learning to show Zen when you feel anything but.  I’m glad for you, and I’m jealous of you.  You don’t have to hold it all in until you find a suitable outlet.

Believe me, it gets hard, when you mother like me.  Certain situations are just harder.  But at least when the gory fantasies (I’m always like Buffy the Vampire Slayer in my daydreams) I had of what I could do when the plane touched down and the kids were handed off to the husband didn’t get to come true, I can always write about it here.

Because some how, some way, this stuff has to come out, if you are going to mother like me.

Written by Spectrummy Mummy

January 8, 2013 at 6:01 pm

Talking Politics

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Really, I’m going to talk politics, after I only just said that I don’t have a political agenda?

Power to the purr-ple

Yes, I’m contrary like that.  Anyway, I’m not really talking politics, but talking about how we talk about politics, or don’t.

You see, Spectrummy Daddy and I can’t talk about politics at work.  Under the Hatch Act, we are expressly prohibited from sharing our political preferences.  This makes a lot of sense.  More than most people, the government decides our work and where we live, so we might feel strongly about one form of government or another.  But we go to work no matter who the President is, and support United States Government interests no matter who is running the show.

This election season has certainly been heated.  In a sense, it is good to see that people feel so strongly about their civic duties.  I, for one, have grown a little tired of just how heated things have become, but Spectrummy Daddy pointed out the ways in which listening to other perspectives can only be a good thing.

Embassies and Consulates around the world celebrate democracy by holding Election Night parties, or due to the time difference in our case, an Election Breakfast.  There was truly a buzz of excitement from our South African guests at our event.  In this country, where there has been 46 political killings in the last two years, it is even more important to reflect the stability of a peaceful democracy.

I was musing this over yesterday evening, and I thought about how we hadn’t really talked to our children about politics.  Obviously, they’re both very young, but they are ambassadors too, and one day they’ll also be voting citizens of the world.  They will have to learn the meaning behind the rhetoric.  They’ll have to learn to speak up for themselves, and for those who don’t have a voice.

They are also little sponges, and I was interested to see how much they’d absorbed of our world these last few days.

So I asked Cubby who he would vote for President: Romney or Obama?

Steve.  (I assume he means Steve Rogers aka Captain America– the only person he thinks should be running the country.  After all, who would uphold American ideals better than his idol?

I asked Pudding the same question, and if you can’t guess her response, you’ve obviously never been here before.

Hello Kitty.

In fairness, it wasn’t as absurd a response as you might expect.  Hello Kitty was indeed running an election campaign for the Friendship Party.

Maybe they are learning something after all.  They don’t sacrifice their ideals for the sake of the popular vote.

I have to hand it to both kids- they at least vote in their own interests.

Wordless Wednesday 31 Oct 12

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Happy Halloween- have a spooktacular wordless Wednesday!

Written by Spectrummy Mummy

October 31, 2012 at 8:14 am

Dancing Teapots

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I decided to take the kids out for an early dinner.  Today is one of those perfect Jozi spring days.  The Jacarandas are blossoming, but they’re not quite at their vibrant peak yet.  On a Friday afternoon sitting outdoors at a cafe in Sandton, you could be in Europe, only with better weather.  This is an unexpected treat for us all.  I was supposed to be having dental treatment, but the water was out- sometimes water and power outages are the only sign that this is still a developing country.  Developing being the right word, for all its economic slump, there is a lot of construction going on here, and sometimes the wrong pipe gets hit.

I sipped at my capuccino with cream, and enjoyed the moment of perfection, knowing it couldn’t last for long.

Pudding was content.  She’d had the Halloween Parade at school, which she’d loved.  She ordered herself a bacon and avocado sandwich and apple juice by herself.  Yes, it is the same thing she always ordered, but I’m pretty sure it is exactly what she feels like eating.  She isn’t just doing okay, she is doing really, really well lately.  She seems more comfortable in her own skin than I’ve ever seen.  The wind picked up and she turned her face to it, enjoying the caress to her skin.

Cubby was out of sorts.  I knew he hadn’t napped, and was too hungry and too tired to know what was wrong.  Normally very expressive, he was down to grunts and shouts.  He couldn’t decide what to eat, even if he wanted to eat.  A siren in the distance hurt his ears.  He was in and out of his chair.  Putting his hands in his drink and smearing it over the table.  Then he began playing with his spit when the drink was confiscated.  Finally he turned to tormenting his sister for entertainment.  The wind picked up, and he shrieked in pain as it whipped at his skin.

Watching the two of them was a study in contrasts.  Pudding, at peace; Cubby intent on disturbing it.  This was her two or three years ago.  This disorder and chaos.  Feeling something was wrong, and not knowing how to put it right.  How far she has come.

Then I let my mind wander further back.  I remember holding infant Pudding.  Apart from when she was nursing, (which I naturally did a LOT) she was screaming.  Arching her back, red-faced, furious at me for not fixing what was wrong.  And I’d go through everything I thought I knew about babies, wondering what I must have missed to make her thrash around like this.  She pulled at my hair in her rage.  The screaming made my head throb, and I wanted to run away from this tiny creature who put all her trust in me.  And though I wanted to shout and scream, I pulled her in closer, and kissed her downy head, and held her until we breathed together, just rocking and kissing, until the screaming was done.

I picked up Cubby and cradled him.  He resisted at first- pushed away, then caved in.  His floppy body curled into mine and I kissed his face.  “I’m a baby.”  He said, like he does so often.  I didn’t correct him this time.  I kissed his fingers and his arms.  He twirled his hands through my hair, just like his sister always had.  I kiss the soft nape, and when I close my eyes, I forget where I am, or when I am.  It doesn’t matter- I am mothering instinctively.

Three year-olds can only be held for so long, so I release him, and he dances for a while- trying to catch the eye of the waiting staff.  I turn back to Pudding, with her wry, contented smile.  I see what’s catching her eye: some paper teapots attached to the ceiling are fluttering in the breeze.  “Dancing teapots”, I say out loud.  “Dancing teapots”, she echoes.  We watch them together, and her hand creeps up into my hair, but in comfort, not in rage.

In that moment of calm, I feel all the many joys she has brought me.  All the dancing tea cups that I would otherwise have missed.  I know, if I have to, I can do it all over again.  Even if I still feel more rookie than veteran.  We’ll grow, and develop, and get there together.

Fan

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Back when we first started planning our trip to England, I wasn’t working.  By the time the trip came around, I was employed, and things were busy.  Not only was I new to the job, but the last couple of months are the busiest time of year, and then because of certain organizational changes, and certain people visiting, things were even busier.  There wasn’t time to think in those last few days, let alone pack, prepare the kids, and prepare the office.  Which means it was perfect timing for things to go horribly wrong.

In the week leading up to our departure, Cubby was ill, followed by myself and Spectrummy Daddy in quick succession.  We all recovered, and were feeling well by Friday, the day of departure.  I hadn’t been in the office for long when the call came from Pudding’s school that she was ill.  I raced out to get her, and out to the doctor.  She was feverish, and looked miserable, which was just how I felt.

Pudding was much more defensive than she usually is with the GP- a sure sign that she was ill.  With much patience and coaxing, the doctor managed to assess her, and promptly diagnosed Tonsilitis and a chest infection.  I must have looked how I felt, because the doctor told me she’d give Pudding some medicine, and she’d be fine to travel.  Really?  Yes, because I was her patient too, and she knows how much I needed to get away.  Pudding could be treated, and would soon be back to full health.

I asked our Regional Medical Officer for a second opinion, and he concurred.  The trip was still on, we just had to get the medication inside her.

That was easier written than done.

Pudding refused all medications, both tablet and syrup forms.  We tried mixing it into drinks, we tried bribing her, she refused.  She was not going to take that medicine!  And I wasn’t, I mean I just wasn’t going to put her through that flight without medication.  I couldn’t.  I didn’t voice it out loud, but I mentally prepared myself for not boarding.  Time ticked on, and we were sent to the gate, still without Pudding taking her medicine.

And then I saw it….a Hello Kitty fan!

Now, Hello Kitty is the tops for Pudding in terms of special interests.  But fans are the most stimtastic things for Pudding.  She learned at just a few weeks old that if she screamed if the fan was turned off, we’d turn it back on for her.  I remember Pudding not engaging in most of the assessments during her evaluation because there was a fan in the room, and she just had to keep telling us about it, and staring at it, and spinning like it.  Fans?  Fans are big.  Hello Kitty fans?  Colossal.  I instructed Spectrummy Daddy to furtively buy one.

And moments before boarding, I showed it to her.  She could have it, but she had to take the medicine.  And this time, no fuss, no fight.  She took it all.  Her temperature started to drop immediately.  And for the first time that long day, she was all smiles.

As we passed through the entrance to board the plane, one of the ground staff asked Pudding if it was her magic wand.  And of course, Pudding corrected her that it was a Hello Kitty fan.  She was right, but it was my magic wand.  And to England we did go by the grace of that Hello Kitty fan.  We ended up losing it a week or so later in some motorway services in the north of England with some other Kitty paraphernalia.

I like to think that some magic rubbed off to whoever was lucky enough to hold it next.  Because in spite of that truly turbulent start, the rest of the flight was smooth…and Pudding recovered quickly, and well, I’ll tell you some of the rest of our magical adventures another time.

 

Written by Spectrummy Mummy

September 26, 2012 at 5:19 pm

Wordless Wednesday 29 Aug 12

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Written by Spectrummy Mummy

August 29, 2012 at 9:14 am

Wordless Wednesday 22 Aug 12

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I have Hello Kitty at home. This might be the world’s biggest understatement.

Written by Spectrummy Mummy

August 22, 2012 at 6:33 am

Wordless Wednesday 15 Aug 12

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Mummy, come here! I’m NOT going to squirt you…

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August 15, 2012 at 6:03 am

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.

Written by Spectrummy Mummy

July 30, 2012 at 5:18 pm

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.