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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Written by Spectrummy Mummy

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