Spectrummy Mummy

Asperger's, Allergies, and Adventures Abroad

Archive for November 2012

Self Advocate

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At the doctors with Cubby, I mentioned to her what a wonderful self-advocate he is.  She had laughed, he had winced, and told her it was too loud.

“And I don’t like people touching me too!”

A statement of fact, but also a warning to the doctor who was about to do just that.  I marveled at him, this little wonder.  It comes so easily to him.

For Pudding, it has not been so easy.  She has always had her own mind, and known her own mind, and every day is a step closer to better expression.  Language is giving her the words and phrases to let us all know what she needs to be.  At her feedback session today, her OT told me how she now makes all her own choices for self-regulation.  I marvel at her.

This kind of advocacy, self-advocacy, is what I most want my children to do.  And yet…I’m only now learning to do it for myself.

This year has been a tough one, with a lot of changes and challenges.  I went to the doctor last week to talk about some of those challenges.  Back in March I wrote a post about a difficult time I was having.  I’d ended the post hopeful that things would get better.  And they did, but I haven’t.

I haven’t really got over the violent crime that happened in our front yard, and even though we were at a safe distance, I replay over and over what might have happened if they were playing there as normal.  The doctor informs me this is PTSD, which lately is manifesting in panic attacks.

On top of this, I’ve always had some social anxiety.  I’m the kind of person who is fine in small groups, but gets overwhelmed by crowds.  My new job puts more social demands on me than anything I’ve done before.  Whereas I’ve been able to avoid many social situations before, now I have to take responsibility for them, and at times it has been overwhelming.

I’ve carried on, because there is no reason why this should be so hard for me.   The doctor and I talked about some of the traits I have in common with the children.  But we also talked about how I give the kids support not because of their diagnosis, but because of their need.

It is time for me to start talking about what I need.  Like time alone to recharge after big events.  Such as knowing that I won’t be required to speak in front of an audience.  Perhaps being okay with the fact that I’m more comfortable writing than speaking.  Or just acknowledging that I can’t function normally if it is loud, or busy, or people are too close to me.  And then playing to my strengths, rather than my weaknesses.  You know, just like how I preach for my children.

It wasn’t easy for me, but I approached my boss.  He is awesome (and I’m not just saying that because he sometimes reads this!) and willing to accommodate my needs so that I can keep doing this job I love, but pushes me in new ways.

I think that with that support I can go from strength to strength, because I’ve seen just that with Pudding and Cubby.  Maybe one day I’ll learn to advocate like them too.

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November 29, 2012 at 8:19 pm

Wordless Wednesday 28 Nov 12

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November 28, 2012 at 3:13 pm

The Germinator

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If I was a graphics queen, there’d be an image of a Phineas and Ferb germinator right here.  Sorry, all I’ve got is bad puns.

 

I haven’t done a Cubby is Funny post in a while.  Not because he is any less funny, but because there is a whole lot of other stuff going on that pushes it to the back of my mind.  And really, we all need the funny.  It needs to be right at the very front.  Life is just easier with a smile on your face.

Poor Cubby is ill right now.  He has a cough, runny nose, fever and tummy ache.  We’re waiting to go to the doctor in a couple of hours.  Meanwhile, he and I have taken the opportunity to just relax together.  Okay, I’ve taken the opportunity to relax.  He has bursts of hyperactivity, then gets foetal on the floor.  He is only one for cuddling on his terms (he gets that from me!) so I’m begging him to come to me like a needy girl does her bad boyfriend.  This doesn’t appeal to him at all.

What he will do is sit on the sofa with me to watch Phineas and Ferb.  As we watched Dr. Doofenshmirtz makes his latest evil -inator, I asked Cubby what kind of -inator he would make.

A Germinator.

I had to laugh.  Then I wondered, so…is this to take away all the germs that are making him sick?

“Yes…and then SHOOT them at people!”

He really is my boy, what with that sick sense of humour.  Watch out, Heinz Doofenshmirtz, you’ve got competition.

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November 27, 2012 at 9:37 am

Wordless Wednesday 21 Nov 12

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My little parrot in his end of school year concert!

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November 21, 2012 at 6:36 pm

First Aid

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Last week, I went along with the Consul General and the Community Grants Coordinator for a ceremony to mark the handing out of the very first Autism South Africa First Aid Kits.  I got to introduce my boss to the dedicated team that brought this idea to fruition.  We also toured an inner-city school for children on the spectrum.  I was immediately recognized by a member of staff as Pudding’s mother- she is such a superstar!

These First Aid kits are packages that Autism South Africa will send out to communities and schools in need to support their autistic learners.  It isn’t an autism unit in every school.  It isn’t specially trained teachers and therapists such as the wealthier amongst us can afford.  This is the most basic toolkit for those with nothing else, for true communities in need: rural, isolated, impoverished.

We got to meet some of the recipients of these kits, and I don’t know how I managed not to shed a tear as they talked about how tools as simple as a laminator and velcro were going to change the lives of children there.  Each kit contains strategies and tools, with a guide to producing developmental toys with limited resources and no impact to the environment.

The US Mission to South Africa provides the Self-Help grant that funds 80 of these kits, but the impact of these strategies is beyond measure.

Beyond measure…just like the potential of those given the right support.  This first aid may not be saving lives, but it is definitely changing them…for the better.

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November 20, 2012 at 5:25 pm

Wordless Wednesday 14 Nov 12

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November 14, 2012 at 3:50 pm

Her Way

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We had our first parent-teacher feedback session since Pudding started Kindergarten.  When we’d first sat down, educators and parents at a large conference table, this was the time we’d earmarked to evaluate our experiment.  Because even though inclusion is commonplace in the US, what we are doing with Pudding is something different here.

So when we’d originally hashed out our plan, this was to have been the day we’d decide if it was working or not.  And if not, it would have meant removing Pudding from this school, and placing her back in a more restrictive environment.

But we knew it was working.  We knew without even seeing her work showing her progress.  We knew from her enthusiasm for school.  We knew from the care and dedication of her teachers that she was in the right place.

Pudding’s teacher told us (as we know) that there are days when she is bright, sharp, and switched on.  And also (as we know) that there are days when she can’t focus at all.  It is hard for a teacher to evaluate- is that progress?

Progress is hard to define in kids like mine.  Tests and measurements rarely show her potential, just her level of interest in being tested at that time.

Pudding started the school year by opting herself out of class most of the time.  She would start a group activity, then go to work one-on-one with the learning support teacher.  She was saying when she’d had enough.  She was advocating for herself by saying, in her own way, that she was overwhelmed.  And then as the weeks have gone on, she is choosing more often to be part of the group activities.  Inclusion, but her way.  I couldn’t be more proud.

And then there are the tangible ways that inclusion is helping.  Her teacher told me that, working in a group of three, Pudding had paid close attention to what her two friends were doing.  She’d coloured and cut out shapes just like her friends.  Not because she was told to.  Not because doing things the same way is right or rewarded.  Because she wanted to.  Inclusion, but on her way.

There were anecdotes galore about the ways Pudding interacted with her school friends, educators and environment that were just so her.  I could write a post for each of them, and maybe I will when I carve out some time.

But for now, I just want to show you this:

This is how we know she is making progress.  We know that where she is happy and comfortable, she will learn.    We know that once she was turned away, and now she is a poster child for inclusion.  The possibility of her leaving wasn’t even mentioned.  We know that she is where she is meant to be.  Now, that is progress.

Pudding’s teacher thinks so too, here is an email she kindly allowed me to share (possibly because I bribed her with french goodies)…

Dear Spectrummy Mummy and Daddy,

As I had a cup of tea and a macaroon, (thank you so much, they were delicious!) I reflected on my day of conferences.  It occurred to me that my conference with you felt a little different from the others.  Was it because I had seen 11 sets of parents before you and felt a little weary or was it because I felt more like a mini celebration?  I think it’s the latter.  Our last meeting together was when we put all our plans in place last school year.  I think we were all a little unsure of how this year would turn out for Pudding and it had a slightly sombre tone.

Today, 3 months down, I felt such a sense of relief when you walked in and looked happy.  I have felt intuitively that  Pudding was doing well and making progress.  It is so hard to do all the formal assessments with her that I do with other children and that hard data is so easy to report to parents.  Often the way I teach Pudding has to come more from a gut feel than from a book or program and as soon as I think I have her figured out and think something will work, she does the exact opposite.

All I know is that Pudding is learning, that she is happy and that she is loved at school.

Yes, she is.  And all because she did it her way.

 

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November 13, 2012 at 4:57 pm

Talking Politics

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Really, I’m going to talk politics, after I only just said that I don’t have a political agenda?

Power to the purr-ple

Yes, I’m contrary like that.  Anyway, I’m not really talking politics, but talking about how we talk about politics, or don’t.

You see, Spectrummy Daddy and I can’t talk about politics at work.  Under the Hatch Act, we are expressly prohibited from sharing our political preferences.  This makes a lot of sense.  More than most people, the government decides our work and where we live, so we might feel strongly about one form of government or another.  But we go to work no matter who the President is, and support United States Government interests no matter who is running the show.

This election season has certainly been heated.  In a sense, it is good to see that people feel so strongly about their civic duties.  I, for one, have grown a little tired of just how heated things have become, but Spectrummy Daddy pointed out the ways in which listening to other perspectives can only be a good thing.

Embassies and Consulates around the world celebrate democracy by holding Election Night parties, or due to the time difference in our case, an Election Breakfast.  There was truly a buzz of excitement from our South African guests at our event.  In this country, where there has been 46 political killings in the last two years, it is even more important to reflect the stability of a peaceful democracy.

I was musing this over yesterday evening, and I thought about how we hadn’t really talked to our children about politics.  Obviously, they’re both very young, but they are ambassadors too, and one day they’ll also be voting citizens of the world.  They will have to learn the meaning behind the rhetoric.  They’ll have to learn to speak up for themselves, and for those who don’t have a voice.

They are also little sponges, and I was interested to see how much they’d absorbed of our world these last few days.

So I asked Cubby who he would vote for President: Romney or Obama?

Steve.  (I assume he means Steve Rogers aka Captain America– the only person he thinks should be running the country.  After all, who would uphold American ideals better than his idol?

I asked Pudding the same question, and if you can’t guess her response, you’ve obviously never been here before.

Hello Kitty.

In fairness, it wasn’t as absurd a response as you might expect.  Hello Kitty was indeed running an election campaign for the Friendship Party.

Maybe they are learning something after all.  They don’t sacrifice their ideals for the sake of the popular vote.

I have to hand it to both kids- they at least vote in their own interests.

Wordless Wednesday 07 Nov 12

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November 7, 2012 at 4:29 pm

Comments

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A recent post I wrote got a lot of attention.  I’d dashed it out quickly, before starting work, as part of another blogger’s link-up.  It was a sensitive subject: calling out Ann Coulter’s use of the R-word, and no sooner had I published it than I was bracing myself for the backlash. 

I should have taken longer than a couple of minutes to write that one.  I should have made it even more clear that I don’t have a political agenda, but a personal one to do my best to ensure this is as accepting a world as I can make it for my children. 

And I know how ridiculous that sounds, and that I will never be enough change how people think and speak and treat each other, but I also know that I have to try.  I know that I’m not on my own.  And I know that I’d do anything to prevent my children being called that term.

The number of views on that post kept creeping up, until it far exceeded anything else I wrote.  While I was pleased that so many people were interested in learning about why the R-word is offensive to the special needs community, I thought how strange it is that the most read post about my children is about something that shouldn’t apply to them at all.

I got comments that day, but they were all of a consensus with me.  I couldn’t help but wonder about the ways my piece had been shared, and what other people were thinking and saying about it, but nothing negative came my way.

Another autism site occasionally takes my posts and publishes them for a wider audience.  A few days after publishing my post, they shared it too.  Here, the comments became offensive:  I was a “cry baby”, I should “grow up”, “it is just a word”.  There were supportive comments too, but what really stuck in my head was the person who insisted that I was “using a blog dedicated to handicapped children to score points against a Conservative woman (I) don’t like.”

I made a conscious decision not to respond to any of the comments there, and asked the site to no longer use my posts.  I understand that some welcome debate, and encourage opposing views with the aim of persuading them to their own way of thinking.  In this case, no heed was being paid to what I’d written.  Assumptions were made about me, and what I had to gain from writing, that had nothing to do with the actual words I’d written.  There would be no changing minds here.

But that didn’t mean that I forgot about the accusations made against me.  I was angry and hurt.  I’m offended by a person using the R-word be they a friend or celebrity, politically left or right.  Am I using my children?  I’ve always written this blog with the intention of sharing it with them. 

This is our journey.  We laugh, we love, we grow, we make mistakes, we reflect, and we learn.  If what I write helps other people on their journey, I’m happy for that- but there is no ulterior motive here.  This is simply the way we encounter the world, and how the world encounters us.

And yet those words stayed with me.  They held me hostage.  They made me question what I’d done, and if I should any longer write publicly.  It would be so easy to stop, I have so little time anyway. 

Even when I forced myself to write, just so that I wasn’t allowing someone else to make that decision for me, it didn’t stop the little voice in my head from repeating those things over and over.  Then I got a comment from a new reader:

I’ve begun following your blog and I find it so moving, amusing, and delightful that I decided you needed to know! It seemed fitting to share it under one of my favorite posts. This makes me think of “The Moose” by Elizabeth Bishop, and the play on perspective made my eyes tear up a bit! Though I have no children of my own, your blog makes me feel like I can handle whatever comes my way with grace, compassion, and humor. Thanks

That comment made me question if I’d handled this situation in a way that was true of what she’d said.  Not really.  I’d allowed myself to feel all the weight of negativity without sensing any of the light.  Ignoring all the support and community to focus on a person’s opinion that is far removed from us.  Who not only doesn’t understand, but won’t try to. 

And if I stopped writing for any reason other than it was the right time for me and my family, I wouldn’t be living life on my terms.  I thought about what I would want my children to do if they were attacked in a similar way, and found my own example severely lacking. 

When I think about how I want them to handle whatever comes their way, I want it to be with grace, compassion, and humour.  Do I want this reader to be right about me, or a harsh critic?

And what if, what if one day somebody were to call Pudding the R-word?  Would I want her to feel held up by the way we see her, or weighed down by one offensive word? 

Thank you to the lady who wrote that comment just when I needed it.  Thank you to each and every one of you who take the time to read, and particularly those who comment.  I don’t always have time to respond to them these days, but I am going to make sure that I pay attention to what you say.  That I really feel your words, and give those the weight that they deserve.  

Maybe then I’ll handle things that come my way with the grace, compassion, and humour that we’re all capable of.

Written by Spectrummy Mummy

November 5, 2012 at 10:38 am