Spectrummy Mummy

Asperger's, Allergies, and Adventures Abroad

Archive for September 2010

Trigger

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Trigger_mechanism

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I have been reading some excellent blog posts by some great bloggers recently that have got me thinking, which is the whole point, I suppose.  Firstly, Laura at Life in the House That Asperger Built gave her take on the recent news that the court case involving a girl with a rare mitochondrial disorder developed symptoms of autism following vaccinations had been settled in her favour.  I’ve talked about the fear I felt when I took Cubby for his MMR, but Laura gives an informative and analytical post that is the antithesis of my wishy-washy vague approach to the whole vaccine debate.  It is excellent.

Then in Welcome to the Mad House, my friend Fi talks about her take on the issue of environmental triggers.  And again here.  It is both tongue-in-cheek and fascinating.  There subsequently followed a very interesting discussion in the comments about autism, anxiety and the influences of environmental factors.  While I firmly believe that Pudding’s ASD is a result of genetics, that she was born this way, at the same time I do think that there was also an environmental trigger.  If I think that she had an environmental trigger for her variety of autism, that does mean I’m open to the idea that there are other triggers, and other varieties of autism too.  There probably is an allergic kind, a premature/ difficult birth kind, an autoimmune kind, and other exposures too that would tip the balance in somebody already genetically prediposed.

So what is Pudding’s story?  For the first 18 months to 2 years of her life, she developed just like other kids her age.  She met her milestones right on target, and never gave her pediatrician any cause for concern.  Having said that, from birth she was a sensory seeker, she was demanding, and her language developed in a different way to her peers.  Pudding was a happy kid though, living a calm life where she was number one, and had all the attention she wished for.  Spectrummy Daddy and I both feel that had things remained that way, we would have continued living in blissful ignorance of Pudding’s differences until she began school, or possibly even later.

That wasn’t to be though.  Cubby was born a few months after she turned two, and suddenly life changed for her.  Here was a screaming infant whose cries hurt her ears, and took attention away from her.  No longer was mummy providing the same level of stimulation and attention, and when she got bored, she got herself into trouble.  To make matters worse, a few weeks later we moved, leaving behind everything that was comfortable and familiar to her.  It was too much.  She couldn’t sleep by herself, and would wake up screaming several times a night.  She would spin and pace around in circles.  She would flap her hands, repeat phrases over and over.  She was fearful of everybody but myself and her daddy.  She needed to be told what has happening all the time, or she became terrified.  She required complete control over her environment and possession.  She would line up her toys. Instead of playing with other children at the playground, she would get in their personal space, and touch their hair.  It was autism, almost overnight, or so it seemed at the time.  For 2 year-old pudding, this level of anxiety was the trigger.  I think that anxiety in this particular situation is a perfectly normal and understandable reaction, but back then I couldn’t distinguish between autism and anxiety.  A year later, I can see that this was anxiety, and for Pudding already predisposed to autism, this was the trigger for her.  As life has become more settled, so has she.  She hasn’t lined up toys in almost a year.  She is far less controlling over her possessions, though she does still like to know where people are going, and what is expected to happen.

I’ll always wonder what would have happened if we hadn’t moved.  If she was older, would she have been better able to handle things.  Or would there have been something else, sooner or later, that would have caused her anxiety which would have tipped the balance.  We’ll never know.

I do know that if I’d known beforehand that Pudding was on the spectrum, I’d have handled our move in an entirely different way.  If you’re wondering (as I have many, many times) why we continue in this lifestyle with such overwhelming changes with a child who had such anxiety as a result, I’ll tell you why.  I joined a group with other Foreign Service Parents of children with special educational needs.  There are a lot of us (was this the trigger for their kids too, or does this lifestyle attract people with certain genetic traits?) in this same situation.  I explained how we were struggling financially to do a domestic tour, but terrified of how Pudding would handle an overseas assignment.  I got wonderful advice from people in the exact same situation.  Who helped me realize that overseas we’d be supported, that we’d be able to create a tailor-made education for Pudding to make the most of her strengths, and assist with her weaknesses.  I’d be able to get the therapeutic assistance she needs.  That the reasons why we always believed in a nomadic lifestyle for our children are still valid, the diagnosis doesn’t change that.

One mother I spoke to has a teenage daughter with Asperger’s who told me that she thinks moving has enabled her to become more flexible, resilient and social (!), required it in a way that a static upbringing would not have allowed.  I have to hope that the same is true for my kids.  Cubby will be the same age as Pudding was when we next move- will this prove to be his trigger too?

Spectrummy

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Spectrummy adj. 1. Having an autism spectrum disorder.  2. About, or related to the autism spectrum.

Usage:

1. Is your son developmentally delayed?  Nope, but I’m pretty sure he’s spectrummy.

2. Are you an Aspie?  No, I’m just a spectrummy mummy.

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September 10, 2010 at 12:25 pm

Me, Me, Me.

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The world revolves around Pudding.  I’m not just talking about her vestibular issues, (I will get to those one day, Courtney!) but in the way that she likes herself a lot, and everything is about her.  She has always enjoyed looking at herself in the mirror, in fact, her teacher bought a mirror for the classroom just for her.  She preens, and says: “Who’s adorable?  Pudding’s adorable.  Yes, I’m adorable.”  Should I draw the line when she starts kissing the mirror?  The girl has had three years of everybody in her family telling her how adorable she is, so it shouldn’t be a surprise that she says it too.  It is a fact, and I’m told that Aspies like facts and sharing them with other people.

In the last couple of months, some of her dolls that previously had their own names have started to be called Pudding (apart from male dolls: they’re Cubby).  Princesses are still princesses in books, but any other girl character has become Pudding too.  And of course, a dozen times a day I’m asked to draw a Pudding for her.  And pronouns being a real problem for her, she constantly refers to herself as Pudding.  So it isn’t really “Me, Me, Me”, more like, “Pudding, Pudding, Pudding.”

The word “autism” comes from the Greek “autos”, meaning self.  And here is the dictionary.com entry for autism:

–noun

1.

Psychiatry . a pervasive developmental disorder of children, characterized by impaired communication, excessive rigidity, and emotional detachment.
2.

a tendency to view life in terms of one’s own needs and desires.
It is the second one that is interesting to me here, is this what is going on?  I don’t know, it seems like something all little girls do.  I can’t tell any more.  My idea of typical is pretty skewed these days.  It seems like the kind of thing I might have done at her age, but I’m not exactly certain that I’m all that typical either!  Although, having read that definition of autism, I don’t think I have it.  I’m too busy focusing on what certain other people want and need.  But if you ever see this entry:
puddingism
-noun
1. a tendency to view life in term’s of Pudding’s needs and desires.
you will know for sure, that not only does she have it, but I do too!  Pudding, Pudding, Pudding.

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September 9, 2010 at 8:23 am

Making the call

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I finally made the call to Early Intervention, the second time around.  I’d been putting it off, telling myself it was too soon to tell.  Somehow though, those yellow flags are adding up, and I need to make the call before they turn red.  This time, actually making the call was easier.  I already had the number.  I already know the process.  I can use the right language.  The lady was lovely, assuring me it is never too early to call (it isn’t!) and that if Cubby doesn’t qualify now for services, we can follow-up again any time before he turns 3.  I was matter-of-fact.  Echolalia.  Good eye contact.  Following directions.  Hand-flapping.  Fan-staring.  Sound sensitivity.  Tactile sensory-seeking.  Spinning.  Bouncing.  Articulation.  Pragmatic language.  Sibling study.  I reduce my beautiful, blue-eyed charmer to these terms.  It is all that needs to be said.  I say it calmly.  She listens attentively, answers reassuringly.  I try not to look at him as I speak.  The whole conversation takes just a few minutes.

And when I get off the phone and I turn to him, that is when I let myself cry.  I don’t want to do it again.  What are the official statistics these days?  1 in 110?  1 in 70?  Not 2 in 2.  Not my girl and my boy.  Both of them.  I already feel that they don’t get what they need. It isn’t fair, but I can’t rage.  It could be so much worse, I know.  I’m being melodramatic.  I know it isn’t a diagnosis.  I know it is getting help.  Help that we need.  Help that might make a difference.  Help that we might not even qualify for.  It is just the first step, the first of many.  I path I’ve traveled down before.  This isn’t a disease, my kids aren’t broken.  Theirs is a peculiar mix of strengths and weakness, a mysterious pattern that is known to us.  It is familiar now, so it isn’t as scary.

He doesn’t notice that I’m crying.  He is playing with his new bus.  Appropriately.  Making the brrm-brrm noises as it passes over the carpet.  He looks just like any other toddler.  Am I projecting my fears onto him?  Could he just be imitating his sister?  Is it something I’m not doing right?  Is it something I’m doing wrong?  Just like the first time, I wonder if it is right to make the call.  And just like the first time, I feel like it is.  I don’t want to walk this path again, but that isn’t my call to make.

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September 8, 2010 at 7:54 am

Back to school

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Pudding is back to school!  As usual the bittersweet feeling for me, the house is always quieter without her around, but life is definitely easier for me when school makes up part of her day.  She was as happy as can be to go, just needing a couple of extra cuddles to see her through the day.  This is definitely going to be our easiest back-to-school transition.  We haven’t moved, she will be attending the same school, in the same class, with the same teacher.  A couple of the older kids have moved up to Kindergarten, but other than that her friends are the same.  It isn’t hard for her this time, nor for me.  I know she will have a good time, I know she is in safe hands, and I trust her teacher to let me know if this isn’t the case.  It is a thousand times easier waving her off today than the first time I put her on the school bus.

Cubby was mad not to be going on the school bus, and I think a little sad not having his partner in crime here, but he enjoys having me all to himself.  But not for long, I have so much to catch up on that I couldn’t do with both of them around.  I have appointments to make, housework to do, people to call.  I’d better get to it…

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September 7, 2010 at 9:38 am

Crime and Punishment

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So you may remember that she made a big mess, and we decided to make a meaningful punishment of no dresses or nightgowns until the end of the week.  Amazingly, we made it to the end of the week.  Although she wasn’t happy the first night, she didn’t make too much of a fuss putting on her pyjamas.  She knew she was in trouble already, so wisely went for the path of least resistance.  It was the following morning I expected to be trouble.  I’d taken the liberty of hiding all her dresses, as she no longer consults me as to what is appropriate attire.  She is the fashionista, after all.  I think she remembered the punishment, because she didn’t even come to me to demand the return of her “pretty dresses.”

I went into her room to check, and found her wearing her underwear and a top.  I found the matching shorts from the drawer.

Me: Pudding, here are your shorts that match your top.

Pudding: It’s not a top!

Me: No?  So what it is it that you’re wearing?

Pudding: It’s a dress.

Oh, touché my girl.  She put the shorts on regardless, and clothing-wise, the rest of the week passed without incident.  It relieved some of my concerns about flexibility.  It did nothing, alas, to curb her self-directed mess-making.  Any time she was left alone, she was right back to her ways.  Wardrobe intervention does not make for an effective punishment, unfortunately.

And we’re back to scratching our heads as to how to discipline such a free spirit.

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September 6, 2010 at 8:12 am

I wasn’t expecting a friend

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A friend is someone who gives you total freedom to be yourself

– Jim Morrison

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September 2, 2010 at 5:00 am