Spectrummy Mummy

Asperger's, Allergies, and Adventures Abroad

Posts Tagged ‘adhd

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.

Written by Spectrummy Mummy

January 15, 2015 at 12:50 am

U is for Untruth

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I have two very different children. I mean that in the sense that they are different to each other, but also that they are, or can be, different. Atypical. Not the norm, whatever that is. And just to keep me a even higher on my toes (toe-walking!), sometimes they behave very typically, and that confuses me the most of all.

Lately in our house, we have been dealing with a lot of untruths. Cubby is a gifted story-teller, and has been from an early age. I sometimes question whether he can tell the difference between fact and fiction, so immersed is he in his alternate reality. He’ll even assure us that he is not lying as he states things that aren’t true…such as his assertion one evening this week that his school is teaching him to speak Norwegian.

Back when we were in the U.S. a couple of months ago, a lady at the park started speaking to me in Spanish, and after a couple of sentences revealed that I am not exactly a native speaker, she told me that Cubby had informed her that we came from Mexico (he has never been there) and he spoke English because his nanny (we’ve never had one) is from Australia (again, never been there).

I’m puzzled by all of this, because our real backstory is just as interesting as this one he chose to create. I struggled to find a purpose for him telling a complete stranger this misinformation. A friend suggested that it is just more interesting to him, and our reality, even one that spans the world, is mundane to him. He has been there, done that, and other locations are new to him, and therefore intrinsically more exciting.

Pudding is different. I used to believe the myth that autistic children don’t tell lies, but Pudding has disabused me of that, and many other ‘facts’ about autism over the years. She just doesn’t lie on the same scale as her brother. Her more recent untruths have been more pragmatic in nature. They have a function that is very clear to me. Unlike her brother, I understand why she lies. Often it is for the same mundane reasons of most children: she wants to avoid getting into trouble for something she knows she wasn’t supposed to do, or she wants to get something she wants.

But while easier to understand, and certainly easier to deal with than Cubby’s untruths, Pudding’s simple lies are the ones that scare me the most.

As you may know, Pudding has a life-threatening allergy to peanuts and tree nuts. We’ve known this since she was a baby, and her whole life we’ve taught her that she must always avoid these items, as well as many other foods that look safe, but may contain items that are very dangerous to her. She has been able to say from the age of three that she is allergic, and will sometimes volunteer this information about herself to others.

While she carries an epi-pen, and her school cafeteria doesn’t offer nuts, and her classroom is “nut-free” for snacks, we still rely on her to keep herself safe. An incredibly challenging thing for any young child, but more so in the case of one with the additional mix of autism and ADHD.

Imagine then, how scared I was at this story her aide recounted to me last week. It was snack time, and one of the other girls had cookies. A most covetable item at the best of times, but when compared to the healthy choices I’d sent with Pudding (carrots and cucumber sticks with rice cakes), the temptation had been too much.

Noticing Pudding’s gaze, the girl wanted to share. But what is more, before she did, she actually asked Pudding if she had any allergies.

And Pudding said no.

A lie that could, quite literally, kill her.

In this instance, there were no dire consequences. Her wonderful aide was right there, and intervened immediately. There were no nuts in the cookies (thank you, parents who obey nut-free rules), and we know to continue to reiterate the dangers of taking food we don’t know to be safe.

It is messy, this parenting thing. Allowing our kids to be themselves, develop naturally, and yet keep them safe is the hardest thing to do. And that, my friends, is no lie.

This post is part of my A-Z series. You can read the rest by clicking >here<.

 

Written by Spectrummy Mummy

September 5, 2014 at 3:05 pm

Wordless Wednesday 13 Nov 13

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Written by Spectrummy Mummy

November 13, 2013 at 4:43 pm

Wordless Wednesday 25 Sep 13

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Pudding

Written by Spectrummy Mummy

September 25, 2013 at 7:10 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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Written by Spectrummy Mummy

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

Dancing Teapots

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I decided to take the kids out for an early dinner.  Today is one of those perfect Jozi spring days.  The Jacarandas are blossoming, but they’re not quite at their vibrant peak yet.  On a Friday afternoon sitting outdoors at a cafe in Sandton, you could be in Europe, only with better weather.  This is an unexpected treat for us all.  I was supposed to be having dental treatment, but the water was out- sometimes water and power outages are the only sign that this is still a developing country.  Developing being the right word, for all its economic slump, there is a lot of construction going on here, and sometimes the wrong pipe gets hit.

I sipped at my capuccino with cream, and enjoyed the moment of perfection, knowing it couldn’t last for long.

Pudding was content.  She’d had the Halloween Parade at school, which she’d loved.  She ordered herself a bacon and avocado sandwich and apple juice by herself.  Yes, it is the same thing she always ordered, but I’m pretty sure it is exactly what she feels like eating.  She isn’t just doing okay, she is doing really, really well lately.  She seems more comfortable in her own skin than I’ve ever seen.  The wind picked up and she turned her face to it, enjoying the caress to her skin.

Cubby was out of sorts.  I knew he hadn’t napped, and was too hungry and too tired to know what was wrong.  Normally very expressive, he was down to grunts and shouts.  He couldn’t decide what to eat, even if he wanted to eat.  A siren in the distance hurt his ears.  He was in and out of his chair.  Putting his hands in his drink and smearing it over the table.  Then he began playing with his spit when the drink was confiscated.  Finally he turned to tormenting his sister for entertainment.  The wind picked up, and he shrieked in pain as it whipped at his skin.

Watching the two of them was a study in contrasts.  Pudding, at peace; Cubby intent on disturbing it.  This was her two or three years ago.  This disorder and chaos.  Feeling something was wrong, and not knowing how to put it right.  How far she has come.

Then I let my mind wander further back.  I remember holding infant Pudding.  Apart from when she was nursing, (which I naturally did a LOT) she was screaming.  Arching her back, red-faced, furious at me for not fixing what was wrong.  And I’d go through everything I thought I knew about babies, wondering what I must have missed to make her thrash around like this.  She pulled at my hair in her rage.  The screaming made my head throb, and I wanted to run away from this tiny creature who put all her trust in me.  And though I wanted to shout and scream, I pulled her in closer, and kissed her downy head, and held her until we breathed together, just rocking and kissing, until the screaming was done.

I picked up Cubby and cradled him.  He resisted at first- pushed away, then caved in.  His floppy body curled into mine and I kissed his face.  “I’m a baby.”  He said, like he does so often.  I didn’t correct him this time.  I kissed his fingers and his arms.  He twirled his hands through my hair, just like his sister always had.  I kiss the soft nape, and when I close my eyes, I forget where I am, or when I am.  It doesn’t matter- I am mothering instinctively.

Three year-olds can only be held for so long, so I release him, and he dances for a while- trying to catch the eye of the waiting staff.  I turn back to Pudding, with her wry, contented smile.  I see what’s catching her eye: some paper teapots attached to the ceiling are fluttering in the breeze.  “Dancing teapots”, I say out loud.  “Dancing teapots”, she echoes.  We watch them together, and her hand creeps up into my hair, but in comfort, not in rage.

In that moment of calm, I feel all the many joys she has brought me.  All the dancing tea cups that I would otherwise have missed.  I know, if I have to, I can do it all over again.  Even if I still feel more rookie than veteran.  We’ll grow, and develop, and get there together.

Googling

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Hello Kitty

Hello Kitty (Photo credit: Wikipedia)

Given that we’re a blogging family, (yes, Spectrummy Daddy blogs too, and you can read his side of the story >here<) and I’ve written not one, but two posts about Google, it is only natural that sooner or later our kids would get in on the act.  Pudding has learned to google.

We’re in the throes of some pretty cool development here in Spectrummy house.  Our girl is doing very well at the moment, in lots of different ways.  I’ll get around to telling you about it.

First things first: googling.  I have to say, by the way, I kind of love how I get autocorrected all the time for my British spellings, but the dictionary has no qualms with “googling.”  Not bad, Google.  I mean, you don’t go around altavistaing, do you?

You know what is hard to google?  Google.  It just brings you back around in circles.  Kind of reminds me of conversations with Pudding.  Or my own thought processes.  Where was I?

Oh yes, google.

I was trying to type a post for you the other day, when Pudding came up to the computer and told me, “You want Hello Kitty.”  Sometimes it is hard to know if she is inverting her pronouns, or trying some kind of hypnotism on me.  I believe either to be equally possible.

So I told her that if she wanted Hello Kitty, she’d have to do it herself.  She knows how to write the words, but writing is a struggle with her fine motor delays.  I thought I’d introduce her to typing as an alternative way of writing words.

So she typed “hello” and I showed her that she must press the space bar between words, and then she typed “kitty” and I showed her the return key.  And as soon as I let her hit that key, I realized my mistake.  Because now she can do it without help.  Which means that we’ll have to password protect the computer or reinvent the internet without stuff unsuitable for five year-olds.  Yep.

Now, because Pudding was already handy with a mouse, she figured out google images, and her newest favourite thing to do is to click through these images describing them as, “Pudding’s Hello Kitty T-Shirt”, or “Pudding’s Hello Kitty toaster.”  It would be nice if there wasn’t also Hello Kitty tattoos, cars, and houses.  Yes, houses.  I guess Pudding’s decided on our next move, and I’m going to assume it is on a whole new continent.  I shouldn’t even worry about her struggling with chopsticks, because there are Hello Kitty training ones.

On the bright side, I haven’t yet encountered anything too inappropriate attached to the Sanrio brand.  In fact, I even saw Pudding googling other things today, like her school.  This is a whole new world that is opening up to her.  I just wish we were ready for the one that we’re already living in.  Still, if it all gets too much, and I don’t know what to do…I can always google for help.  It has worked out for us so far!

 

Written by Spectrummy Mummy

August 18, 2012 at 8:28 pm