Spectrummy Mummy

Asperger's, Allergies, and Adventures Abroad

Archive for June 2012

Lessons in Asperger’s #1

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Pudding has been swimming with her instructor twice weekly for 6 months now.  I’d be hard pressed to find anyone outside of the teaching profession who so perfectly encapsulates the balance between pushing a child, and being sensitive to her needs.This instructor has a knack for teaching kids who haven’t done well in other swim schools, including other kids with special needs.

Pudding adores her.

I made it clear from the outset that the instructor should feel free to use a zero tolerance policy when it came to not paying attention during the lesson.  Getting distracted could have serious implications in the water, so our alternative was to warn Pudding that if she wasn’t listening, she would have to sit out of the pool.

Of course, Pudding’s neurological mix of ADHD and ASD make it very difficult to maintain her focus all the time.  There are many distractions, both in and out of the pool, which make 20 minutes seem like an awfully long time.  Inevitably, some days Pudding gets put out of the pool, given time to get herself back together, then allowed to swim again.  Her instructor never minds, because it seems like even on those days when it is hard for her to focus, she is swimming well.  Some days she swims well, some days she listens well.  We take either as a good day.

Yesterday, she did both.  She listened to every direction, and followed it beautifully.  For the first time ever, Pudding out-performed her typically-developing peers.  It was one of those beautiful, wondrous days when all the efforts my girl puts in paid off.  And her teacher and I got to bathe in that glory too.

What really made me smile, however, was that after all this time of getting to know Pudding (and other children on the spectrum), there are still some ways in which the instructor is learning.

At the start of the lesson yesterday, Pudding led her friend down the steps of the pool, rather than sitting in the usual place to begin.  Oh my goodness- it was so cute- but not following the rules, so her teacher was forced to intervene, albeit smilingly:

Girls, where are you going?

The other girl stopped in her tracks, and dutifully turned around and returned to sit at the side of the pool.  But I knew, I knew what was going to happen next.  Because I’ve learned lesson #1 in speaking with an Asperger child: Never ask a question unless you want a direct and honest response.

I watched knowingly as Pudding continued on her merry way, only to respond to her teacher:

I’m going down the steps.

We all burst out laughing.  Lesson #1, my friend.  Don’t worry, there is plenty more she has to teach us, just as long as we are always willing to learn.

Written by Spectrummy Mummy

June 15, 2012 at 12:23 pm

Lucky

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Pudding’s American Girl doll came back to us this week, following a brief stay in hospital.  Did you know there was a hospital for dolls?  I remember reading stories about dolly hospital when I was a girl, though no such thing existed back then.

So, shortly after Pudding cropped Kelly’s hair, I discovered that for about 1/3 of the cost of a new doll, we could send her to hospital to be made good as new.  That was the easy part.

The hard part was deciding if that was the right course of action.  If the doll could be fixed, would Pudding ever learn the consequences of her actions?  Would she just do the same thing all over again.  I didn’t know the answer to that, so I decided to let Future Me decide.

Over the following weeks, Pudding’s interest in her doll dwindled to nothing.  She went from playing with her all the time, to discarding her completely.  It seems like a big part of her interest in the doll was her hair.  I don’t know to what extent that was because it made her “pretty” or because she enjoyed the tactile sensation of the hair.  It doesn’t really matter.

What mattered to me was that a source of play had gone from her life.  Some might say that the way Pudding played with her favourite doll- changing her diaper and dressing her up- was repetitive, a hallmark of her autism spectrum disorder.  I would say that she played in a way that made her feel comfortable.  In a challenging, confusing, and out-of-control world, Kelly was hers, she’d earned her, and she played with her just the way she wanted.

So then all the clothes and accessories that relatives had bought Pudding for Christmas went unused too.  There was not only a emotional investment, but a financial one too.  That very pragmatic reason, is what prompted me to finally check Kelly into hospital.

Or so I told myself.  I knew the real truth as we watched her open the box to find her friend complete with pigtails and hospital gown.

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Do you see that smile?

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That is why.

Sorry, she was moving too fast to get any good ones, but you can definitely see the glee.

I’d do just about anything for that smile.  Even run the risk of another hair-cutting incident.  She adores the gown, her new pinktails, the little get well soon card that came with it.  Most of all, she is happy to have her doll back.  Her real doll, not the short-haired imposter she couldn’t play with.

Pudding is incredibly lucky in that she comes from an advantaged family who can afford to replace a doll.  Goodness knows there is a settlement a little further on from her new school with kids living in shacks without water or electricity.  American Girl dolls are from an entirely different world.

She is growing up learning that we need to help out others who aren’t so fortunate.  Whatever challenges our family might face, they pale into insignificance compared with the way others are struggling.

We’re incredibly lucky in that we get to see that smile.  We get to connect with her, share in her enthusiasm, and see her happy-flappy joy.  Oh, I know how fortunate we are!

Pudding will always be an American Girl, just one growing up with a wider view of the world.

Written by Spectrummy Mummy

June 14, 2012 at 11:48 am

Wordless Wednesday 13 Jun 2012

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Happy Wordless Wednesday, and an early Happy Father’s Day to Spectrummy Daddy, who has had to put up with a whole lot of head rubbing from Pudding since he decided to shave off his hair on a whim.

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Written by Spectrummy Mummy

June 13, 2012 at 10:05 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

Rage Against the Latrine

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Okay, this post is not going to be for the more delicate amongst you.  I will completely absolve you if you skip this one.  I’m talking about potty-training, and truth be told,  I’d like to skip the whole ordeal too, but it seems to be part and parcel of parenting.

And you know this isn’t the first time I’ve sunk so low: try googling “pretzel potty” and see whose blog is the number one hit.  Yes, I make my family so proud!

So, not to be too specific, earlier this week Cubby did something on the potty that he had never done before.  Full disclosure, he did something on the floor near the potty, but it was close enough, and we celebrated, cleaned up, and celebrated some more.

Unlike his big sister, who is queen of positive reinforcement and seemed to potty train herself, Cubby is much more reluctant.  We were therefore delighted to take this next step.  Cubby likes himself some social praise, so I set to telling his teacher, our neighbors, grandparents on Skype etc.  If our paths haven’t crossed in the last week, be glad.  Be very glad.

So yesterday, he tells me he wants to go again.  Yay!  I tell him we have to upstairs to get him on the potty, because <you-know-what> goes in the potty.

No, Mummy, I don’t think that’s right.”

I think my head did that cartoon-swivel thing.  “<You-know-what> goes in the potty, not in your pants,” has been part of our echolaic background brainwashing since before he was born.  Pudding has said it approximately 17 times a day for the last three years.  She lives by that mantra.  He grew up to that soundtrack and adopted it for his own (in word, though not in deed).  It was even one of his first sentences!

There were many ways to handle this, and of course I chose the absolute worst- trying to outsmart him.

Me: Oh yeah, so where does it go then?

Cubby: In the diaper……that’s what they’re for, Mummy.

Wow.  Yes.  Now the big question is, how am I ever going to come up with a strategy for a kid who is already smarter than me?  I need help, if I’m ever to get him from can’t to the can.

Written by Spectrummy Mummy

June 8, 2012 at 11:03 am

Negotiating Sleep

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You know how I recently said that I’m not a warrior mama?  Perhaps I just wasn’t a good one.  I’ve spent the last three years battling a lack of sleep, and losing every time.  Regular readers know that Pudding, like many children with autism and/or ADHD, has trouble sleeping through the night.  Or going to sleep by herself.  Or staying asleep beyond 5am.

I like my sleep.  Some would say that I’m a better person when I get it, but only those who have met me. With sleep I have energy and confidence, patience and determination.  All the things that might make you a good fighter, if that was what you chose to be.  Without it?  Let’s just say every day could be a battle, and nightfall brought no respite.

If there was a method, or tactic, or intervention that claimed to help with sleep, we tried it.  Dietary, sensory, homeopathic, behavioural, pharmaceutical…nothing worked.

Gradually- and this may have come around sooner if I’d had enough sleep to ever think straight- I realized we needed to stop fighting.  For the last few months, we went with a plan that looked a lot like surrender.

When Pudding woke up in the night, she would come in our room, Daddy would vacate the bed, and she would crawl in beside me.  Or one of us would lead her back to her room.  She wouldn’t go back to sleep unless we were also there with her, and when she woke again, she would repeat the same process.  If we didn’t, lets just say we’d be dealing with four people who were awake all night.

It was still a fight though.  A fight to reassure her before her crying and screaming woke up her brother.  A fight to rouse myself before Spectrummy Daddy took another night duty before having to go to work the next day.  A fight to keep going the next day after endless nights of disturbed sleep.  A fight to keep trying to find the magic trick, the cure-all, the answer to our years of insomnia.

A couple of nights ago, I decided to offer a compromise.  I asked Spectrummy Daddy to bring in the mattress from Pudding’s old bed, and we made her a little bed on the floor next to ours.  We’d unsuccessfully tried this before, but this time I explained that if she needed us in the night she could just come and get in the bed next to us.  We wouldn’t make her leave if she didn’t disturb us, or wake up her brother.  A negotiation.

And it works!  I found her there this morning, and I hadn’t heard her come in during the night.  Sure, one day, I’d like her to be able to sleep in her own bed, but right now she is too anxious, and she can’t conquer that enemy by herself yet.  After years of fighting a losing battle, this negotiation feels like a win.  And for once there are no casualties.

Written by Spectrummy Mummy

June 7, 2012 at 12:25 pm

Wordless Wednesday 06 Jun 12

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Tea with my boy. South Africans know how to do some things just right!

Written by Spectrummy Mummy

June 6, 2012 at 1:57 pm