Spectrummy Mummy

Asperger's, Allergies, and Adventures Abroad

Archive for December 2010

Out with the old, in with the new

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It is inevitable, at this time of year, to look back and reflect.  Some big things have happened this year, like my girl starting school a few years before we’d anticipated, in a classroom we’d never have planned.  Like Spectrummy Daddy going to Afghanistan, twice.  Like realizing that Cubby also had some special needs, thinking they were more severe, then learning that they probably aren’t.  It has been a big year for being confused, and being worried. Aren’t they all?!

It has been a normal year.  My kids who previously seemed to be only children started to discover a relationship with each other, and now show affection to each other.  There was the odd bit of toilet humour.

It has been a year of good days and bad days.  Becoming a Hopeful Parent, and finding those small moments that make it all worthwhile.

It has been a year about struggling to find time for me.  A year for discovering writing, forging new friendships, and discovering a community even at my most isolated.  Finding my voice, helping Pudding to use hers.  Sometimes pictures spoke louder than words.

But really for us, this has been a year about being in the same place.   A year without moving, a year without even leaving the country.  I don’t remember the last time I spent an entire year in the same country.  Sometimes we were going round and round in circles.  In every sense, this year was about being static.

I’m ready to move forward, and see what the next year brings.  See where 2011 takes us.

Happy New Year Everyone.  I have a feeling 2011 is going to be a good one!

Written by Spectrummy Mummy

December 31, 2010 at 7:09 am

Give and Take

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Pudding got Christmas this year.  That in itself is pretty huge.  She got that Santa brought presents in the night; some were for her, some for her brother.  She got that, she just didn’t always accept it.  She liked that Santa bought her various pink and princessy items.  She was cool with Father Christmas bringing Cubby trains and boy things.  But Santa had made a mistake with one present, and she has done her best to rectify that ever since.

A couple of months ago, we’d seen a Sesame Street book with a toddler’s “CD” player and discs.  It was perfect for Cubby, who likes Elmo, and music, and touching (scratching) any grown-up CDs and DVDs he can get his hands on.  We did not anticipate that within the few weeks between then and Christmas, Pudding would develop a new special interest with Ernie.

Special Interests are, well…special in our house. Even before the diagnosis, we’ve always enabled and cultivated these passions.   Of all the aspects of spectrummy life, special interests are the easiest for us to understand.  This is because both Spectrummy Daddy and I both have special interests now, and we did as kids too.  In fact, not having special interests would be unusual for our progeny.  You try telling Spectrummy Daddy that Batman is not the greatest super hero of all time, and see where that gets you.  Just like if you even suggest to me that there might be a greater novel than Jane Eyre.  As a young child I was crazy about horses.  I’d even got a small collection of tack, but…erm, no pony.  Then anyone who knew me as a teenager remembers my obsession for Take That far exceeding the typical teenage infatuation.  I even went to the same concert five times in a row.  My parents were enablers too!

So, at the time of purchase, there was no Sesame Street or Ernie for Pudding, she was enthralled with Upsy-Daisy again.  My parents bought another doll to replace the one she carried everywhere with her, and she was ecstatic with new and old Upsy-Daisy.  But she made more requests for Ernie, we found and bought a stuffed Ernie for her birthday, and that was it:  Ernie, Ernie, Ernie.  I must admit to feeling a little sad for Upsy-Daisy, at being so quickly usurped, but like Sleeping Beauty and other special interests, they still remain close to her heart.  Their importance to her just waxes and wanes.

So all this left us with a dilemma over the CD player.  In the end I decided to give it to Cubby.  It is Elmo, rather than Ernie, after all.  But the instant Cubby opened it, Pudding snatched it away.  One of the songs it plays is The Rubber Ducky Song, after all.  For the most part, he doesn’t mind.  He has plenty of other toys to occupy him.  When he decides he does want to play with it, a possessive Pudding isn’t willing to share.  It is usually around this time that Ernie decides he wants to ride on the back of Pudding’s bicycle, and Pudding graciously runs to assist him in this endeavour.

That is the other good thing about special interests, they make for great motivators.

Written by Spectrummy Mummy

December 30, 2010 at 7:17 am

Wordless Wednesday 29 Dec 10

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I didn’t take many photos on Christmas Day as Pudding was ill, but here they are with their rides from Grandma & Grandpa.

Written by Spectrummy Mummy

December 29, 2010 at 7:25 am

Posted in wordless wednesday

Space Invaders

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Space Invaders style

Image via Wikipedia

Cubby has been making strides in his occupational therapy sessions.  What’s more, he is getting better at dealing with people outside his familiar surroundings.  Better than I am at helping him to deal with people, at least.  He is that exasperating mix of being touch-aversive and an adorable toddler.  People are in his thrall, and he loves to flirt….until that flirting becomes physical.  I don’t know why strangers are so compelled to touch children.   I suppose it is like the way I can’t resist a puppy, though if I’m warned the dog might bite, I’d think twice about stroking him.

When he begins to get distressed, he initially gets squirmy, trying to back way.  Yet these supposedly neurotypical masters of body language don’t pick up on this.  So I’ve become more direct.  I’ve tried to tell people that he doesn’t like to be touched.  It doesn’t work.    I’m incredulous that it doesn’t work.  If, as an adult, I asked not to be touched, I’m fairly certain that would be respected.  But it is almost like a challenge.  They are provoked by seeing that he is fine being touched by me.  I must be an overprotective mother who refuses to let others come near her precious cherub.  They think, maybe he doesn’t like others touching him, but I’m sure he’d be fine with me.  They continue, getting into his personal space, stroking his cheek, or rubbing his hair, right until he starts screaming.  And even then, instead of shamefully admitting defeat, they ask me what is wrong with him! 

He doesn’t like strangers to touch him.  What is wrong with YOU?

The whole thing reminds me of the old video game, Space Invaders.  It doesn’t matter what lasers he shoots, The Aliens are advancing, ever closer.  My defensive bunkers aren’t offering adequate protection.  When they touch him, it will be Game Over.

So now that he has a few weeks of Early Intervention OT under his belt, he is comfortable with giving a high-five.  It works like my very British arm-stretched-out-for-a-handshake manoeuvre, that also keeps huggers at bay.  Just enough contact to make all parties happy.

Almost everyone.  Pudding really struggles with this.  She is one of the Invaders.  This is her Space too, and she is driven to touch everything around her.  Long before her diagnosis, our ‘Wheels on the Bus song’ featured mummies saying, “Don’t touch that.”  Those same strangers who find me over-protective with Cubby, must also wonder why I’m allowing my preschooler to handle everything, and everyone, she sees.  Her body awareness is so poor that half the time she isn’t even aware she is touching, or leaning, or making contact.  The other half of the time, it is just a compulsion.  I’ve watched her run to something in the distance, so attractive to the eye that she has.to.touch.it.  Touching things just makes her feel better.  In a new place, the first thing she asks to do is to touch the ceiling.  We think it is her way of feeling the physical boundaries, when her senses are so unreliable and overwhelmed.  I’m terrified of going to houses that aren’t Pudding-proofed.  There is no way I can keep her from touching (and probably breaking) interesting but delicate artifacts.  Just like there is no way she can stop touching her brother.

Together, somehow, they have come up with their own thing.    Yesterday I heard the two of them giggling, something that generally indicates trouble.  I went down to the basement to find that she had covered him in stickers.  There must have been at least 30 stickers on him.  Cubby, like many toddlers, likes stickers, but he doesn’t like the sensation on his fingers.  He was thrilled to have the end product on his clothes, without having to touch them.  She was just as happy.  I let them carry on until the stickers were all gone.  I’d never thought of this solution, but it was perfect.

Bonus points, and the high score goes to my two players.  Hopefully the next level comes with defensive bunkers that are in tact, and a whole new set of powerful lasers.

Written by Spectrummy Mummy

December 28, 2010 at 7:26 am

Home sick for Christmas

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I get homesick at Christmas.  It feels strange to say that, because our motto is that “Home” is where we are all together.  Each different place we’ve lived together has been our home, and every future one will be too.  So I call here Home the rest of the year.  I’m not expected to get homesick in a place I call home, where I’m a citizen, and own property, where people (mostly) speak the same language, and has many cultural similarities.  There is just enough the same to make it feel really different.  When we’re serving at a post, I don’t feel like a foreign-born spouse.  When we have a domestic assignment, I really do.

There is something about Christmas that makes me yearn for England, and my family and friends there.  I’ve only spent one Christmas in England during the last seven years, so perhaps that adds to the nostalgia.  I’m probably homesick for a Christmas that doesn’t even exist any more.  My parents no longer live in the house, nor the area where I grew up.  My brothers have their own families now, and my friends are all grown up too, with their own commitments and schedules.  I think when you live at a distance, your mind can play tricks, and you convince yourself that the place you can’t be is a perfect paradise.  If you were only there, everything would be just as it is supposed to be.  Fortunately, I only get like this at this time of year, and the rest of the time I immerse myself in my surroundings.  I’d be pretty insufferable otherwise.

There was no way to go to England this year again, and probably not next year either.  For our family, the tradition is now to spend Christmas with just the four of us.  I’m acutely aware that the way that we celebrate now will be the memories that make our kids nostalgic some day.  I’ve tried hard to get into the spirit for this reason, and to encourage Pudding and Cubby to do the same.  For the first time this year, I felt like Pudding “got it.”  We’d played with her nativity set.  We’d read stories.  She’d helped me to put our ornaments on the tree, and when we finished, she informed me that the presents would do right here (under the tree) and Santa would bring them.  We’d attended her school Christmas party, and her delight and excitement was contagious.  We made plans to spend a festive day with friends on Christmas Eve, followed by a cosy day at home by ourselves.

When she woke up on Christmas Eve, she refused food and drink.  As Pudding is almost always in a whirl of hyperactivity, this was our first clue that she was ill.  She had a fever.  Her temperature came down with medication, and she had no other signs of illness, so we continued with our plans, and she was fine, though a little subdued.  We waited for her to get better or worse, but she stayed pretty much the same.  She went to bed, smiling as we told her that Santa would come in the night.

Pudding woke up even earlier than usual on Christmas Day, chattering away to herself until Daddy went in to see her.  Instead of coming in to cuddle with me as she does every morning, she stood rattling the gate and pleading to go downstairs. She was thrilled with her presents, but not long after breakfast she asked to lie down on the sofa with me.  As the day wore on, she looked more out of sorts, until she fell asleep.  After about an hour, she woke up, was violently sick, then went to bed.

For the first time ever, we took down the decorations on Christmas Day.  I just wanted Christmas to be over this year.  Even the Christmas Tree came down, and everything was packed away for another year.  Like Pudding’s illness, my homesickness has abated now too.  I’ve packed that up, hopefully it won’t come out again for another year.  It is time for everything to return to our version of normal, whatever that is.

Written by Spectrummy Mummy

December 27, 2010 at 6:59 am

iBelieve

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From before you could buy an iPad, I knew I wanted one for Pudding.  When Cubby was born, his father bought me an iPod Touch.  When I was nursing the newborn, Pudding latched on to the iPod.  I was amazed how well she could use it, how naturally the touch screen and visual layout came to her.  I downloaded some apps for her, and uploaded some cartoons.  It came so naturally to her, she learned so easily in this format.  I didn’t know at the time that she was a visual learner, like many other children on the spectrum.  Of course, I didn’t even know there was a spectrum back then.

I didn’t notice then that her fingers didn’t work quite as well as they should.  I remember during her initial OT evaluation remarking that there was no way she could have significant fine motor delays, as she was so very capable with my iPod.  I was wrong, and following the diagnosis, I observed how her little fingers would struggle and wished they made a bigger iPod that would be just the right size for her.

Months later, that was exactly what Apple did with the iPad.  By that time, however, the device was way out of our budget.  I told myself we’d save up for one for her for Christmas, but finances just became more and more difficult.  We couldn’t afford the therapy our doctor recommended, then we had to let go of her occupational therapist, and speech therapist.  We’d purposely remained in the US to provide the best treatment options for our girl, we’d never imagined how difficult that would be.

I started to read about how the autism community had discovered the same thing with this technology as I’d observed with Pudding.  The iPad tapped right into our kid’s strengths.  Developers created and marketed apps directly to those with communication challenges.  The iPod, and later the iPad, became a more affordable communication device.  Families discovered how it helped their loved one to remain organized, with visual schedules and social stories at the touch of a button.  Pudding’s teacher introduced them to the classroom, and is undergoing training to help Pudding and her classmates use them to their full potential.  Apple had created a revolution.  I told myself one day, perhaps after returning to work, we’d become part of that revolution too.

I didn’t have to wait.  Pudding is the very fortunate recipient of an iPad.  A gift of kindness so touching I can hardly find the words to express my gratitude.  We aren’t waiting for Christmas, she is using it right now.  Though she can use it to access entertainment, it isn’t a toy.  She uses it, she doesn’t play with it.  It is fostering her independence as she makes her own leisure choices.  It is teaching her how to write the letters of the alphabet, and the basics of reading.  It is a tool that works with the way her brain works, rather than struggling against her differences.  I’m busy learning about other apps to organize her day, and encourage appropriate behaviors in unfamiliar situations.  If anybody reading this can recommend apps, please do so in the comments.  We’ve got a lot to learn, but I’m already amazed.

And I believe.  I believe in kindness and goodwill.  I believe that this world is becoming more accommodating to those with differences like my girl.  I believe in my girl.  I believe in her future, with all the tools she needs to succeed in life.

I believe in Santa.

*****

If you have anything left over to give, please consider making a donation to the Autism Society of America, so that other families might benefit from this amazing technology.

Written by Spectrummy Mummy

December 24, 2010 at 8:47 am

Fashionista, revisited

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You must admit, she wears it well.

Earlier this week I reposted my Fashionista post, for an activity at The King and I, where a group of bloggers shared their first ever posts.  For some people, they’d been writing for some time and lots has changed since that first post, but I only started blogging in July, so not much has changed for me.  I still write most of the time about a girl I call Pudding, and she still likes to wear dresses, most of the time.  She particularly likes wearing nightgowns to bed, and has been known to hold her most epic meltdowns over this issue.

We came back from Florida and it was noticeably colder than when we left.  Below freezing cold.  Snow on the ground cold.  Cold to me, and I’m from the north of England, cold.  Cold, then.  Nightdresses aren’t such a good idea.  They were fine in Florida, but when we got back, it was time to take a stand, I said.  We put pyjamas on her.  She got angry.  She told us she didn’t want to wear them, she wanted to wear a nightgown.  We stood firm.

Then, she did it.  By herself, she came up with a solution.  She asked to wear her nightgown on top. Okay, we said.  A compromise.    A negotiation where both sides work together to get what they want.  A taste of what the future might hold for us.  Pudding joining our team, instead of fighting us.  I like it a lot.

And wouldn’t you know?  She rocked that look!  It kind of makes me want to do it as well.  You’ll be seeing this look again, people, but remember where it all began.  A fashionista then, and a fashionista now.  The more she changes, the more she stays the same.

Written by Spectrummy Mummy

December 23, 2010 at 7:06 am