Spectrummy Mummy

Asperger's, Allergies, and Adventures Abroad

Posts Tagged ‘asperger

The Gift

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Pudding Notes

One of the great things about international schools (and the reason I push so hard for them to admit Pudding), is that every kid there knows what it is like to be different. Sometimes we have had excellent teachers who worked hard to include Pudding. Sometimes, the kids themselves have stepped up. The last year here has been challenging in a number of ways, but one thing I never had to worry about was other students not accepting Pudding.

We don’t have any explicit social skills teaching here, for better or for worse, but Pudding does have an excellent aide to help her navigate the social world at school. Though her methods for interacting are sometimes perceived as unusual, Pudding has always been socially motivated. And where she has a will, she will always find a way.

Soon she had a close set of girls in her class who became friends. In class they would sit around her. At concerts, sports days, and assemblies they would support her, in a non-intrusive and accepting away. They found her level and they met her there. Her friend Ana* was a natural at this, perhaps having observed her mother, an occupational therapist who had previously worked with children on the autism spectrum.

Last year Pudding wasn’t allowed to participate in Spanish classes, which was a great source of frustration for us all. When I would collect her after lunch, she was often visibly (and audibly) distressed at having to leave her friends. One day her friend Sofia* drew her a picture of the two of them to let her know she was missed too. And so began a correspondence between the two, that continues to this day.

On days that Pudding had a hard time leaving, she now began sending notes to the kids going to Spanish lessons. And here is where things get really special- they sent them back. Concrete reminders that she was accepted and missed. She belonged. I would often find caring notes and pictures from kids in her grade I had never met before. Her ability to connect with children even beyond her close set of classmates.

Sometimes the acceptance took a while longer, but resistance is futile. Pudding took a shine to Cho*, a boy in her class last year, and he was pretty intimidated by the strength of her not-so-subtle affections. Over the course of the year, he went from avoiding her to becoming a good friend.

One of the bad things about international schools, is that most children who attend them do so on a temporary basis, like us. So recently we had to say goodbye to Ana and Cho. It feels no exaggeration to write that Pudding was heartbroken. Pudding worked through her feelings by sending notes.

In the meantime, Pudding’s friendship with Sofia continued. The two progressed from sending notes and pictures to small gifts and tokens. At least once a week, Pudding would come home from school with a gift bag from Sofia, and she would find or make items for Sofia in return. In time we have managed a successful play date, and both Sofia and Pudding are looking forward to the next one.

But she still misses her friends who have moved on. When I mentioned that another mother was going to visit Ana and her family her native country, Pudding knew exactly what to do- she would send gifts to go with her. She carefully selected items, wrapped them in paper she decorated herself, and sent them to Ana. I just heard today that Ana was delighted to receive her present. She was sad that her friends in Argentina had forgotten her, and Pudding’s gift was a concrete reminder that she is loved and missed.

The school has allowed her to attend Spanish lessons now, and she keeps finding other ways to connect with new friends. Her ways aren’t always conventional, but her sentiment is sincere and unmistakeable. Every effort is a gift.

*Not their real names. Neither is Pudding, in case you didn’t know!

Written by Spectrummy Mummy

October 15, 2015 at 4:26 pm

Wordless Wednesday 14 Jan 15

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Whoever thinks it takes two to tango has clearly never met Pudding.

Whoever thinks it takes two to tango has clearly never met Pudding.

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January 15, 2015 at 12:50 am

Wordless Wednesday 09 Apr 14

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Imagee, 

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April 9, 2014 at 5:06 pm

Wordless Wednesday 26 Mar 14

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March 26, 2014 at 4:37 pm

Wordless Wednesday 06 Nov 13

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November 6, 2013 at 5:31 pm

Wordless Wednesday 09 Oct 13

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I love this photo of Pudding, mostly because of this evil smirk on her face.  I don’t know what was going through her mind, but I think humankind should be prepared to suffer, just in case.  I can’t tell you how many people say she looks like me here, she definitely gets her evil from her mother!

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One day I’m going to catch this kid smoking, and try to tell him it isn’t cool, and he will wave this photo in my face!  He looks like a mini James Dean, but with more attitude.  No smoking though, son.  It’ll still kill you, no matter how cool you look in the meantime.

Yeah, yeah, I wrote some words on Wordless Wednesday.  What can I tell you?  The government shuts down and you get anarchy, people!

Written by Spectrummy Mummy

October 9, 2013 at 8:49 am

First Grade

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First Grade

 

First day of First Grade, complete with social story in her hand.  First day for Pudding, at least- the rest of her classmates started last Wednesday, but we were still quarantined after the operation.  Though I’m anxious to know how her day went, I know she is in good hands.  Her new teacher emailed me to say she’d not only read my last post, she’d pinned it to her wall.

“We are all different and we all learn differently.”

Amen to that.  I’m glad Pudding is back where she belongs.

Written by Spectrummy Mummy

August 19, 2013 at 1:41 pm

The Autism Dream

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Last Day of KindergartenWork.  Work is busy.  Work is…American.  This is the American Dream.  You puts in hard efforts, and you gets big rewards.  We all buy that, right?

I remember when we first got Pudding’s autism diagnosis (actually, Asperger’s diagnosis, but I’ll come to that) how I thought that we could extend the American Dream to apply to this situation.  The Autism Dream.  I was a new immigrant to this unfamiliar land, you’ll forgive me.

If I worked hard enough, if we did enough therapies.  If we tried this therapy, or bought this app.  If we just put in enough efforts, we’d get the rewards we deserved.

And what would those results be?  TIme has changed my answer to that, like it has so many values I took as sacrosanct.  But back then, I hoped for results and improvements, measurable values that we can find in the world of work, but impossible to apply to my daughter.

Still, I had ambition, and I was prepared to graft.

Then yesterday came the results of our reevaluation, which were at once completely expected, and a shock that has left me reeling.  We need to do frequent reevaluations to apply to international schools and set up our therapeutic programs.  That whole free and appropriate education provided by law just doesn’t apply to us overseas.

And so now we find that the Asperger diagnosis, doesn’t apply to Pudding, and should never have been given to her.

“Her language skills did not continue to develop as expected.”

Rather, she meets the criteria for the new DSM-V Autism Spectrum Disorder, with the following additions:

– Language Disorder, Not Otherwise Specified

-Disorder of Written Expression

-Learning Disorder, Not Otherwise Specified

and maintaing her Motor Coordination Disorder and ADHD diagnoses.  Just words in stark black and white.

According to the American Dream, we would work hard and overcome these obstacles, not face more and more challenges as time goes on.  As happens every time I read one of these reports, I’m heartbroken at the difference between the way we view the same child.

Am I not working hard enough to make things better for her?

Hours after reading this report, I placed my girl on the bus for her last day of Kindergarten, and I saw the contrast I needed from the cold and clinical report.  She made an incredible achievement this year.  She has learned to read and write, advocate for herself, make consistent progress, and graduate from kindergarten.

She has gained the affections and support of her peers and teachers.  She has faced the challenge of a new environment, and excelled there.  She has earned her spot in a school, and a place in the community.  She has made me proud every single day.

And that is The Autism Dream for us.  It isn’t that we can work away her challenges, it is that she can grow and develop and match them.  On paper, she doesn’t look good.  In person, she is incredible.

I’d be lying if I said this was easy.  I’m crying as I type.  But I know there isn’t a report that could be written which could ever capture how amazing this child is.  I know, because I’ve written about her for years now, and I’ve barely scratched the surface of everything I could say about her.

The Autism Dream has never been about changing her to fit in, but revealing this world and our societal standards for the imperfections that they are.  She shows me truth, joy, and love.  She shows me what is truly importantl, and I never want to wake up from that dream.

 

Written by Spectrummy Mummy

May 31, 2013 at 3:50 pm

Wordless Wednesday 22 May 13

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May 22, 2013 at 7:29 am

Letting Kids Be Kids

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You’ll have to forgive my mood in this post.  I have a particularly nasty chest infection.  It hurts when I move, laugh, talk, or- you know- breathe.  Pudding is also home ill with tonsillitis.  She complained about her head hurting at the weekend, and took an extraordinary (for her) five hour nap on Sunday, but since we visited the doctors and got her medicine, she seems back to herself.

With one exception.

Because she had a fever, we didn’t give her her usual medication for ADHD.  Sometimes Pudding is doing so well, I forget what a vital component medication has been for her.  Then we take a break, and I remember.

I remember Pudding before she was five, with a body and brain that seemed to be in overdrive.  And now, even though she is ill, it is just the same.  Her body can’t get the rest she needs to recover.  Her brain is seeking stimulation that she just can’t handle at the moment.  She needs to rest, and that is the one thing she can’t do.

I never wanted to put Pudding on medication.  I looked in vain for another way.  We tried a few ADHD treatments where we felt the side effects were worse than the results, and then made a last-ditch attempt before giving up.  Her particular chemistry found the right match, and the hyperactivity reduced considerably.  It isn’t perfect, she still struggles greatly with attention, but her engine isn’t in overdrive any more, and slowing down just a little has helped her in every possible way.

Honestly, I don’t know if the child who couldn’t sit for even 20 seconds would have been welcomed into a mainstream class.  I’m not sure if the child who skipped through books so quickly that every single one we owned was torn from its bindings would have ever slowed down enough to learn to read, or write.  I know that she finds it easier to get through her various therapies now.  I know that she is able to learn now.  And play.  And swim.  And do all the other things that kids can do.

She may have made this progress anyway, but seeing her these last couple of days makes me think it would have been slower, and harder.  The faster her wheels spin, the deeper she sinks into a rut.

I’m not saying that medication is for every child- far from it.  Stimulants were terrible for Pudding, and a spectrum child seems far more likely to have atypical side effects.  I still want to be the idealist mother who could find another way.  But I know we made the right choice for our kid.  I know that she is happier, feels better, when she can calm herself.

So what really ticks me off, is when I read yet another unscientific article about how ADHD (and sometimes ASD) is a construct of our times.  Sometimes people actually send me these articles, wanting to help, I suppose, but doing quite the opposite.  I can think of a dozen other ways to help other than telling me I’m doing it wrong.  Sometimes I read, sometimes I just delete.  They always read the same.  Parents and doctors don’t let kids be kids, and if we just let our children play outside, or kept them off candy/ computers/ TV, or gave them the right diet/ vitamin/ parental attention they would be fine.  Let kids be kids, and don’t turn them into zombies!

When the truth is- I just want to let my kid to be a kid, that is all I’ve ever wanted.  This is one of many ways I help her to do just that.  I wouldn’t even care about how exhausting her condition is for me, if it wasn’t even worse for her.  There is no magic pill, but if there is something that helps her, perhaps even reduces the risk of harm coming to her, I’m going to keep on doing it.

And if there is anyone who thinks Pudding’s ADHD or her autism aren’t for real….well, they’re more than welcome to come here and get a dose of reality.  Because much as it hurts at the moment to chase around a child who can’t keep herself out of harm, it hurts a whole lot more to be judged for doing it as well as I can.

Written by Spectrummy Mummy

May 21, 2013 at 12:39 pm