Spectrummy Mummy

Asperger's, Allergies, and Adventures Abroad

Posts Tagged ‘Family

R is for R & R

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Pudding reconnecting with my mum.

One of the benefits to living in (cue ominous music…) The Most Dangerous City in The World, is that the State Department grants us two R&R trips during our – assignment there.  Now, you know that we love Johannesburg, and what we have seen of the rest of South Africa.  But it is equally true that we need that break.  Back when we initially started planning that trip, we really needed it.

Then seasons change, and life alters, and you kind of get on with things.  Pudding has just started Kindergarten, and is doing very well.  I’ve only been working for a few weeks, and it isn’t the best time for me to be out of the office.  I adore Jozi in springtime.  The weaver birds are back, the weather is perfect, and it just feels lighter and happier there.

It reminds me of the early weeks when we first arrived, and just couldn’t believe our luck.  And then when, inevitably, the trip started to look like more hassle than a break, I wondered what kind of R&R it would actually turn out to be.

And then we actually arrived in England for the first time in almost four years, and it was all worthwhile.  It was Cubby’s first time here (outside of the womb) and he revelled in seeing double-decker buses and black cabs in London.  Both kids delighted in spending time by the sea- not the ocean.  And the kids got to meet their cousins, and spend time getting spoilt by their grandparents, and living, and playing, and being themselves.

We are having the time of our lives.  Or a time in our lives.  A time of many R-words.  We’re recharging, and reconnecting.  I’d even go so far as to say we’re resting and relaxing.  I knew we needed it, but I didn’t know how much.  I’ve taken lots of photographs here, and in almost every one, the kids are smiling.

Who knows, the kids might even start feeling so comfortable with their grandparents that we’ll even be able to have another elusive R-word: a few hours of respite.  Because just as we love Johannesburg, but need the occasional break…the same can be said of parenting high-needs children.

And if we can successfully Recharge and Reconnect, we’ll be Ready to go back to Routine.  And nothing to do but plan the next Rest and Relaxation, and make sure we don’t wait for four years next time!

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

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Written by Spectrummy Mummy

September 5, 2012 at 8:42 am

Wordless Wednesday 15 Aug 12

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

Written by Spectrummy Mummy

August 15, 2012 at 6:03 am

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!

Written by Spectrummy Mummy

July 28, 2012 at 1:01 pm

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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Image

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.

 

Written by Spectrummy Mummy

July 18, 2012 at 5:53 am

Lily’s Ring

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My GrandparentsI want to tell you a story about my paternal grandmother, my Nannan.  She was petite with fiery red hair that she kept tamed under a headscarf whenever she left the house.  Nothing tamed her temper though.

One day she was riding on the bus after going into town to buy a hammer for my Grandad, when she became uncomfortably aware of a man sitting near her.  She decided to get off the bus a stop early, and just as the doors were closing, the man jumped off too.

She crossed the street, and the man did too, she tried to slow down to let him pass, but he dropped his pace accordingly.  Alarmed, but alert, she recalled the hammer in her handbag, and quick as a flash whacked him on the head with it, then ran home.

She told my Granddad of her encounter, and he said next time she rode the bus, he’d come with her.  The following week they got talking to another older couple on the bus, and my Granddad proudly stated that he was coming along for protection- not that his wife needed it.

Too right, responded the man, you can’t be too careful- only last week some mad woman hit me with a hammer!  He then lifted his hat to show a nasty lump on his head, as his wife tut-tutted about the lunatics around!

And when she later recounted that story, there was no mention of how she’d misread the man’s intent, or how perhaps she shouldn’t have been so quick to violence, she merely congratulated herself that she’d adequately covered up the hair that would immediately identify her as the aggressor.

Yesterday I was making rhubarb and strawberry crumble for my family, and my Nannan’s wedding ring (which I’ve been wearing since this happened) fell into the flour.  I was suddenly transported back thirty years, sitting in her kitchen watching as other hands wearing that ring made the pastry for her meat and potato pie.

That ring, that she wore every day of her married life, had never left England until it was given to me, after her death.  Though she lived the longest of my grandparents, she never got to see me graduate, or get married, or meet her great-grand-children.  She could never have imagined the places it would go.

She lived in the same place her whole life, and knew more about it than anyone else I’ve ever met.  She knew every superstition, and lived her life according to them, though she wasn’t very religious.  She had her own ways.  She even had her own language.  She called rides, from kiddie ones to roller-coasters “hurdy-gurdies.”  I’d never heard anybody call them that before, but let me tell you- every one of her great-grandchildren does!

My Nannan was called Lily, and we gave Pudding that for her middle name.  I’ve often wondered what she would have made of her first-born great-grandchild.  So many times I wished that she could have met her.

She wouldn’t have had much time for things like diagnoses and therapies.  They didn’t do things like that where she was from, another time, another place.  I don’t think anyone ever questioned the way that she lived so rigidly according to routine that we had to all return from a trip early because she had to get back for laundry day.

We always took for granted her incredible memory, and the sharpness of her brain that did a crossword a day to the very end.  She was a very unique and special lady.  I wish I could talk to her now, catch her up on all the things she has missed.  I hope that she is watching us ride the hurdy-gurdies.

Then I look at Pudding, and I think how right it was that she took her name.  How they have so much in common, that it feels like some of Pudding is Lily.  I could see my girl swinging that hammer if someone got too close to her.

One day, when it has made even more pastry, and navigated the world a little more, I’m going to give that ring to Pudding, and tell her all about how special its first owner was.

Written by Spectrummy Mummy

June 11, 2012 at 2:45 pm

The Whole Story

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I haven’t written about what has been going on, but I’ve decided that all parts of the story need to be told.  This month has been hard.  I need to let my friends who call me a super-mum know that I’m really not feeling super.  I need to explain that although we love living here, it comes at a price.  But most of all, I just need to tell the truth about hard times, because I know many people are going through even longer, tougher, more challenging times.  It isn’t fair to them, or myself to pretend everything is fine.

So, this month has been hard.  Mostly it has been difficult because I’ve been unwell.  So as not to scare away my (three) male readers, I’ll refer to my health issues as some ongoing lady problems that have been getting progressively worse.  Ultimately, I’m now very anaemic, which is good in that it is treatable, but bad in that it makes me feel lousy.  I’m weak and tired.  My brain feels like mush, and can’t seem to retain any information, I’m forgetting appointments.  I have heart palpitations, and wake up with numb hands, arms and feet.  My immune system is struggling, so I’m catching every germ I come across, and each one is hitting me hard.

Some of my medications have nasty side-effects too, and one weekend my fingers swelled up and I had to have my wedding and engagement rings cut off.  But I am receiving treatments, including iron injections every two weeks so that I’ll be back to speed in weeks rather than months.  Though I can’t exercise at the moment, I’m doing my best to rest, eat an iron-rich diet, and take all the supplements to support the healing process.  It just takes time.

I’m spending much more time indoors than I have previously while living in South Africa.  Unfortunately, living in a house with bars on the windows inevitably feels a lot like living in a prison, this is made all the worse by the fact that recent events mean I don’t feel as safe in my home as I used to.  Earlier this month, there was an armed robbery on our compound.  By a huge stroke of luck, all the families who live here were out at the time.  Generally on a Saturday afternoon, either our children or our neighbours are playing where the incident happened.  Anyone who has a young child on the spectrum knows that in the face of danger, they are likely to behave unpredictably.  I’ve lost many hours of sleep thinking about what might have happened if we hadn’t gone out that day.  The security officers here are great, and have already made some changes to minimize the risk of this happening again, but I’m shaken that an electric fence, gate, and security guard were ultimately so easy to overcome.

It has been hard because I’m always far more homesick after my parents visit than I am before.  Homesickness and culture shock are wrapped tightly together.  The more you miss home, the more alien a place can seem.  I’m struggling to remind myself to enjoy all the wonderful people and places here, rather than wishing for September to get here for an R & R trip back to England.

Last week brought things to a head.  I forgot to take Pudding swimming one day, then Cubby to OT another.  Then Cubby was ill, followed by Pudding too.  Instead of wanting to rest in bed, my kids become more hyperactive when they’re sick.  Not only was I struggling to keep up with them, but I’d missed the very things that help them to regulate.  By Friday, I was just exhausted.  Not only was I feeling too weary to face the effort of getting Pudding into school, or schedule an appointment for a 24-hour EEG for a child who couldn’t handle a 30 minute one; but I was too drained to get through another ordinary day.

Far from the “super-mum” a friend called me in an email, I was feeling physically and emotionally at rock bottom, and taking my frustrations out on the very people who most need my love and support.  When Spectrummy Daddy got home from work, I took a bath, and let my tears fall into the water, until most of the tension left me.  After we’d got the kids to sleep, we talked about what measures we could take to make things easier.  But, once I’d finally let go of trying to keep everything together, I no longer felt like I was coming apart.

It isn’t the end of this hard month yet, but I’m starting to feel stronger.  Yesterday when the car broke down, I didn’t join it.  I was just grateful it happened with Spectrummy Daddy there, and in a safe place.  I’m using visual strategies to keep me on track of the things I need to do this week, and hopefully that will keep me from getting too overwhelmed.  After all, if it is good enough for Pudding, it is good enough for me too.

So now I’ve honoured the truth.  I’m not a super-mum.  Though I love living here, it does come at a cost.  I can go through hard times, and while they have absolutely nothing to do with autism, they can challenge my ability to parent.  I’m going to keep telling the whole story, even if I’m hoping that this particular chapter will come to an end soon.

Written by Spectrummy Mummy

March 26, 2012 at 11:50 am