Spectrummy Mummy

Asperger's, Allergies, and Adventures Abroad

Archive for February 2011

Do you see what I see?

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“I think in pictures.  Words are like a second language to me.”

Thinking in Pictures, Copyright © 1995, 2006 Temple Grandin, Vintage Books.

Our appointment with the optometrist took place.  She didn’t complete all the tests, but we are now armed with the knowledge that Pudding has a slight astigmatism in both eyes.  However, she demonstrated that she could read letters at a distance and close up.  We’re going to need to get her to complete more of the testing to figure out exactly how able she is to see.  Believe me when I say that this is easier said than done.

So I watch her all the time.  I follow her gaze and I try to work out if something is interesting to her.  It is clear or distorted?  Is it making much difference to her vision, or barely any?  Not surprisingly, but frustratingly, I can’t tell.  We are speaking different languages, with no translator to help.  She is learning my language, but I still struggle with hers.  I’m verbose, my ability to visualize is limited by that.  I think in words.

Still, seeing the world through Pudding’s eyes is always a breathtaking experience.  Yesterday we were waiting for the school bus to arrive, and she gazed up into the branches of a tree directly overhead.  She seemed to be in a trance for a while.  I looked up, but saw nothing but the twigs and branches of the tree, and the pale morning sky behind it.  I asked her what she saw, and she responded that she saw a bird.

I couldn’t see a bird.

I moved around to change my position in case it was obscured from my sight, but even after walking around, I still couldn’t see anything but the branches of a tree.  Perhaps her vision is much worse than I thought.  I asked her where it was, and she lifted her arm up in an approximation of a point, there.  Nothing.  Then I watched as she raised her finger again, and traced the letters of her name in the branches.

She sees with more than her eyes.

Later that day we went out for a walk and I took my camera with me.  I played around with the exposure until I got this image.  I really wanted to capture how things might look to her, with her eyes that take in too much light, and ever-so-slightly distort reality.  I may not see how she sees, but I think I found a bird and her name in there.

You just have to really want to see it.

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Written by Spectrummy Mummy

February 17, 2011 at 7:20 am

Wordless Wednesday 16 Feb 11

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Pudding, 2.5years.

Too bright, too much light,

hands block out the sight.

Written by Spectrummy Mummy

February 16, 2011 at 6:58 am

As Easy As…

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…riding a bike.

Last week at our fortnightly OT session, there was a young girl of about 10 in the waiting room.  She was tall, and beautiful with big almond-shaped eyes, and long hair that she nervously twirled with her fingers.  She was also uncoordinated, and perpetually in motion.  She had the hesitancy of someone speaking a foreign language, and seemed to be present, but elsewhere at the same time.  Just like an older version of Pudding.

As I studied the girl, her mother watched mine.  After the girls both left for their respective appointments, the mother and I began to talk.  They were with the military, and had been stationed at a base in England when her daughter was the same age as mine.  We chatted for a while about England, and local resources.  The mother mentioned that they were there because her daughter was still unable to ride a bicycle.

Pudding got a bike for Christmas from her grandparents.  She liked it immediately, but only to sit on, and put Ernie in the doll carrier.  She has vehemently declined any attempts to get her to ride it.  We weren’t too concerned.  Both Spectrummy Daddy and I were 8 before we rode without training wheels (stabilizers).  Pudding’s balance and coordination is far away from being up to riding a bike.  All in good time.  The lady immediately contradicted me.  She had waited and waited, but the balance and coordination never came.  Her daughter hadn’t cared in the early years when she was uninterested in her peers, but at around 8 she had made a couple of friends.  They could ride their bikes with ease, and she was miserable at being unable to join in.  She urged me to start right away.

She makes a valid point.  Balance and coordination probably won’t just magically appear, but will require lots of practice and repetition.  Pudding has never even rode a tricycle.  My parents bought one for her when she was around Cubby’s age.  She was content to ride on it as we pushed her along, but her feet just slipped off the pedals.  By the time our belongings arrived back from their trip to the Panama Canal, she had comically outgrown her trike.  Her grandparents bought her a bike for Christmas, but aside from ringing the bell, and putting Ernie in the carrier, she hasn’t shown any interest in it.  Of course, it is winter, so we haven’t been able to get outside for a while.  The ice has almost entirely melted away, it is significantly warmer now than it has been in weeks, so I resolved to give it a try.  We waited until the weekend so Daddy would be around too.

It was tough.  Even with training wheels, it was hard to get her to balance on the seat.  Her lack of body awareness means she can’t tell if her feet are on the pedals or not.  She doesn’t have the motor planning skills to propel forward, and when she turned backwards, the coaster brakes would cause her to stop abruptly, which scared her.  We didn’t even get around to steering.  And a helmet is a sensory nightmare too.  Whoever said it was easy to ride a bike has obviously not though about all the tiny, but crucial steps that need to be mastered.  They obviously have a brain that can process all these things simultaneously.

I find it incredibly hard to keep going when something is so hard for her.  I’m more than tempted to scrap the idea, and revisit when she has better body-awareness and strength.  But as Spectrummy Daddy wisely reminded me, we don’t give up.  It might take a while.  It might need to be broken into the smallest of steps.  We can master our frustration and learn patience, and Pudding can learn to ride her bike, one day.  The look of determination on her face is all the proof I need.

Written by Spectrummy Mummy

February 15, 2011 at 12:29 pm

All You Need is Love

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There’s nothing you can do that can’t be done.
Nothing you can sing that can’t be sung.
Nothing you can say but you can learn how to play the game.
It’s easy.

Nothing you can make that can’t be made.
No one you can save that can’t be saved.
Nothing you can do but you can learn how to be you in time.
It’s easy.

All you need is love.
All you need is love.
All you need is love, love.
Love is all you need.

“All You Need is Love,” The Beatles, Lennon/McCartney, Parlophone 1967.

_____________

I hate Valentine’s Day.   There, I said it. I hated it when I was a spinster (hate that word too) and I still hate it now.  That is a lot of hate for a day that purports to be about love.
It isn’t about love though, it is about crass commercialism.  A day when we feel lonely if we don’t have a significant other.  And if we do, we feel bad if we don’t buy our loved one an expensive gift, or go out for a meal that costs three times the usual price.  Really, if you’re in love, you should be showing that every single day, not waiting for a cheesy romantic occasion.  In our house, my husband is the romantic one.  I told him to never buy me anything for Valentine’s Day, not even a card, and I meant it.  I’m the Ebeneezer Scrooge of this day.  Bah, Hallmark!

I never even liked Valentine’s Day as a teenager.  Admittedly, I was a mousy-haired, flat-chested, glasses-wearing (when forced to), braces-wearing, skinny little nerd, so the odds weren’t really in my favour, and I knew that.  But what if I hadn’t got it?  What if I’d been unable to interpret the mixed messages of Valentine’s Day?  Earlier I googled “Valentine’s Day” and “autism” and it came up with a link for a social story about Valentine’s Day that was aimed at adolescents on the spectrum.  It described socially appropriate touching, ways you can tell loved ones that you care about them, developing feelings about certain people, and the specifics of card giving and receiving.  Awesome, right?

No!  Because even this came with a price tag of $9.95.  If anything is going to be tough for our kids, and really, LOTS of things are going to be tough for them, navigating the minefield of romance and social appropriateness is going to be the worst.  Add in the novelty and break from routine you get on a holiday, and the ensuing sensory overload, and I’m just downright offended.  Even here we can’t have a free service?  I’m okay with charging exorbitant amounts for flowers and jewelry, people don’t need those, but an adolescent teenager could get themselves into a world of trouble, confusion, and heartache, simply by not being able to understand another person’s intentions.

So yes, I hate it.

Nonetheless, I just assembled 11 Valentine’s cards for Pudding to take to her cupid party tomorrow at school.  I think it is stupid that even preschoolers are sucked into the ritual.  And she gets hyped-up enough on sugar at Halloween, Christmas, and Easter; not to mention candy reinforcers in her classroom and speech therapy.  I don’t like it, but I don’t have to.  It isn’t about me.  Just like the time I made the s’mores, this is another quintessential American experience.  If there is a treat involved, she’ll like it.  And if she wants to do it, I’ll make it happen for her, just like any other day.  There is nothing she can do that can’t be done.

One day I know I’ll have to explain Valentine’s Day and what it means.  I might even use a social story, but I absolutely refuse to pay a penny to anyone trying to make a profit.  She can learn how to play the game, though it probably won’t be as easy as The Beatles promised.  I hope I’ll be able to convey to her that a relationship isn’t validated by the things you buy one another at a prescribed time.  Love is spontaneous, and timeless and worthy of being celebrated every single day.  Even if you just do that by bringing a cup of tea in bed in the morning.

Still, she’ll inevitably come to her own conclusions, just like her daddy, who left me a box of chocolates this morning.  Nothing you can do but you can learn how to be you in time.  It’s easy.

Love is all you need.

Written by Spectrummy Mummy

February 13, 2011 at 8:36 pm

Be Prepared

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No, I was never a scout, or brownie, or girl guide, or anything remotely similar.  Not me.  I was bookish and indoorsy as a kid.  And as an adult too, for that matter.  But the scouts do have it right with their motto.  These days I always try my best to be prepared.

Today I’m taking Pudding for an eye exam.  This will be her third.  The previous two were pretty disastrous.

The first time was when we were still living in Luxembourg.  Pudding was two, and she was surprisingly cooperative (though predictably wriggly) at first.  Then we got to the part with the magic eye pictures to determine her ability to see in 3D, and she just wouldn’t point to the picture.  I tried all kinds of ways to coerce her, but she refused.  I wasn’t too concerned, and put it down to her age.  I was almost due to give birth to Cubby, and a few weeks away from leaving the country.  I told myself that I’d get her checked out again when things calmed down.  Still waiting for that to happen!

So last January I found a developmental optometrist.  He was very patient, but she once again refused to cooperate with certain parts of the exam.  Only this time we had a full meltdown, and we got no further.  In the parts of the eye test that she’d participated with, there were no problems.  Once again, the depth perception portion of the exam went untested.  I’m certain that there are some underlying and treatable problems with her vision that compound her perception difficulties, if only we could get them tested.

Third time lucky.  But we can’t rely on luck.  So I found an app for the iPad with eye exams and we practiced looking at the letters, and her teacher has helped her to cover her eye and look at pictures.  I asked the OT to do the same in her session yesterday.  I took both kids on a practice visit to the optometrist’s office, and I made a social story with the photos I took there.  I looked into her eyes with part of her toy medical kit.  I can’t think of any further ways to prepare her.  And yet, I still think it is going to be a disaster.

Do the scouts have a badge for making an aspie have an eye test against her will?

On my honor, I will do my best.  We’ll see if I’ve prepared enough.

Written by Spectrummy Mummy

February 10, 2011 at 7:00 am

Wordless Wednesday 09 Feb 11

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One of my old favourites of Pudding and her daddy.

Written by Spectrummy Mummy

February 9, 2011 at 7:15 am

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The Personal is Political

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The State Department (my husband’s employer) actually used to rate the conduct of the spouse’s behaviour as part of the officer’s evaluation. That doesn’t happen any more, to my husband’s great relief, I imagine. So I can say what I want on my own personal blog, if I choose to. And when we are overseas entertaining, I could, in theory, speak my mind, but I don’t….always. You don’t need to go to many official events before you realize that the topics of politics and religion are best avoided outside of close company. See, Spectrummy Daddy didn’t make such an awful mistake in his choice of wife, now did he?

So while I could, on my personal blog, talk about these thorny issues, I choose not to. It isn’t that kind of blog. Those who know me privately know where I stand. My intention is not to divide, it is to tell you all about the girl I refer to as Pudding. Pudding doesn’t care who you voted for, or which god you pray to, or if you don’t at all. I hope that is something she doesn’t grow out of. That she will continue to see through to the juicy human goodness underneath our opinions and beliefs. The things that unite us, rather than divide us. It is one of the many wonderful things about her. I might have autism to thank for that. After all, it doesn’t tend to discriminate either.

But sometimes, politics seeps in. It seeps in when politicians put air quotes around the word autism, as though we’re all imagining it. Parents, teachers, therapists, doctors, all involved in a mass hallucination. It permeates when votes are cast as to whether or not her medically diagnosed condition is covered by health insurance. Health insurance that we pay for. For a condition that was diagnosed by medical professionals. Words fail me.

When I started this blog, I wanted to show people what autism means to us. Pudding is comparatively lightly touched by autism. Her type is certainly not as disabling as it is for some of her classmates, whose daily struggles far outweigh those she faces. Nonetheless, she requires a lot of support, a lot of intervention in these critical early years to develop the tools to let her function as independently as possible in the future. She needs therapies and services that she yet to receive in the 18 months since she was diagnosed. We can’t afford them. Our insurance won’t cover them. Decisions are made by those whose lives are far divorced from the struggles of the many families like us. The personal is political.

And sometimes the political becomes personal. I read this yesterday, realizing part way through that Brian, my husband’s friend from college, is referring to our family. I’m glad that we have talked about some of these issues with our friends. I’m glad that minds are changing, even if it is just one at a time.

Today the bill for autism coverage in Virginia will be debated. The bill is very modest compared to those already passed in many other states. It will only cover children aged 2-6. We’ll have moved anyway by the time it comes into effect. But this could make all the difference to Pudding’s classmates and their families. No matter what their religion, I’m pretty sure they’re praying for politicians to do the right thing today. I know I am.

Written by Spectrummy Mummy

February 8, 2011 at 6:54 am