Spectrummy Mummy

Asperger's, Allergies, and Adventures Abroad

Posts Tagged ‘Asperger syndrome

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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Written by Spectrummy Mummy

January 15, 2015 at 12:50 am

On Safari

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We went on a safari.  Yesterday we woke up even earlier than the kids to drive out to Pilanesburg, which is a game reserve about 2 and a half hours from where we live.  I wasn’t holding out much hope of success.  We’ve done a few self-drives before, and the kids just got bored in the car.  Now with driving for hours on top of driving for hours…I didn’t see that they’d be in the best of moods.

I wondered if we were ready.

Cubby likes giraffes, and along with zebras, we seem to have had lots of opportunities to see them.  I wondered if he was even bothered any more.

As for Pudding, well- it isn’t like you see Hello Kitty on safari.  She hasn’t shown much interest in animals at all.

It was a hot day, so we smeared on the sunscreen to the disgust of both kids- but tactile defensiveness doesn’t defeat African sun.

I’d hoped to set up my tripod on the seat next to me, but Pudding soon let me know that she was sitting next to me and nowhere else.

Was it going to be worth it?  

Then we started moving.  Maybe it was the bumping of the safari vehicle that appealed to her senses, maybe it was the warm African wind blowing in her face…perhaps both…but Pudding was happy. Not content.  Not just smiling.  Whole body fizzing in excitement.  Her feet were stamping, her arms were flapping, she was shaking with glee.  It was sheer joy- and as always when I get to witness such perfection- I was grateful that she feels in such a way that the whole world gets to share it with her.

Just movement and wind- we hadn’t seen an animal yet.

Just inside the game park, the ranger came to a halt.  I wonder how she’d react but she took it in her stride.  The ranger wanted to know what animals everybody wanted to see.  The kids at the front requested lions.  Cubby requested giraffes- I guess he still likes them.

I asked Pudding which animals she wanted to see.  Silence.

I still sometimes take that silence as a lack of response.  I should know better.  After a few seconds, she knew what she wanted: an animal that we hadn’t seen yet on any of our self-drives.

Hippo.

And what do you know?  Right after some impala, we got to see some hippos.  Most were submerged in the water, cooling off from the hot day.  But there was a baby hippo just standing by the shore.

hippo

Meant to be- just like someone else I know.  We lasted out three hours and took in elephants, lions, zebras and lots more.  Yes, we were ready, and yes, it was worth it.

I’m supposed to be writing a post about autism awareness today, and I have nothing.  This girl hasn’t changed who she is.  This world hasn’t changed for her.  But she is taking on more and more of it, and I feel along with her every fizzy, frothy sensation of glee just for being here.

Watch out world- aware or not- here we come!

 

Written by Spectrummy Mummy

April 2, 2013 at 6:26 pm

Feeling Included

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So today was finally the day.  My nerves have been wracking for weeks as I faced up to the challenge of public speaking.  I’d been asked to participate in a conference on international inclusion, and as much as my instincts have me running away from such opportunities, I decided to follow the example my girl sets me every single day: I got out of my comfort zone.

The conference had started yesterday, but Pudding was down with what turned out to be a double ear infection, so she took priority.  Spectrummy Daddy took today off work instead so I could still do my bit.  I got talking to the lady at the table next to me, a principal of an international school.  Before long she revealed that her daughter is also diagnosed with Asperger’s Syndrome, and now doing really well- not just in college, but spending a year abroad in Paris.  I felt that feeling of connection that we spectrum parents always feel when we meet.  We’re never alone.

Part of the day the conference participants were divided up into groups to see learning support in action, but I wasn’t placed in  group, so I did the “mummy tour” of just the bits that were relevant to Pudding’s education.  I got to check out “Pudding’s office” which is also known as the sensory room.  There I learned how Pudding manages her sensory needs in school (just the same as at home, really) and the awesome Ms. B reiterated how much she loved working with Pudding.

I had a bit of free time, so I sat near Pudding’s classmates as they ate lunch.  The teaching assistant for Pudding’s class was there, and we’d recently discussed how she was hoping to continue as the teaching partner in her classroom next year.  Not only that, but she was fighting with a few other teaching partners who also had their eye on working with Pudding next year!  How far we have come, from schools that wouldn’t admit her and teachers who couldn’t work with her, to a place where she is accepted and loved for who she is.

Next I moved to Pudding’s classroom, where her teacher presented a slideshow of videos about Pudding and how our inclusion project is working out.  The video ended with one of Pudding’s classmates sagely noting that “she learns from us.”  It kind of sums up inclusion in a sentence.  What this little girl hasn’t realized yet, though, is that she is also learning from Pudding.

One of my favourite parts of the day was the student panel.   A group of middle and high school students talked about their experiences of inclusion: the diversity here included South African children on scholarships, as well as those receiving learning support.  These students were incredibly articulate, and could detail the many benefits they received from an inclusive education.  It was a showcase of all that is great about the school, and fascinating to me considering that not long ago some of these kids wouldn’t have even been admitted to the school.

And then it was my turn.  I’d love to say that I conquered my nerves, but that isn’t the way these things work.  I did, however, acknowledge those nerves- it is just part of who I am, and as I neared the end of my presentation, I found that the shakiness in my voice had almost disappeared.  I talked about our experiences- both positive and negative- with special education, I talked about how this school had initially rejected Pudding for pre-K, our conditional acceptance into Kindergarten, and the incredible successes we have enjoyed ever since.

Everyone at the conference responded really positively to what I had to say.  The director of the school hadn’t known that we were initially rejected from his school, and wished to speak to me privately.  He reiterated that the school was developing and learning how to really build a community.  International schools can only really do that when they’re allowing all of us to be part of that community.

It was time to leave, but not before more I met with more educators and faculty members who told me that our story further resonated because they too were parents of children with learning differences.  We are all connected, in some intangible way by our experiences.  Here in South Africa they call it Ubuntu:  a philosophy that can be summed up by ‘I am what I am because of who we all are.’  I think these international schools are going to be whole lot better because of who we all are.  And including us- as parents to speak at conferences, and as children to be educated- is going to make them the best that they can be.

No Distance

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For the last week or so, our family has been on vacation.  So when the tragedy in Newtown, CT took place, I followed the aftermath through my phone on Facebook, and occasional news headlines that made it through to South Africa.  I wasn’t able to blog, and refrained from a brief statues update when that couldn’t possibly convey the range of emotions I was experiencing- both upon hearing the news, and then observing the media reactions.

When you live a life like ours, this feeling of distance is always present.  I’ve been a US citizen for five years now, which is often deemed not American enough by some to comment on news or politics- even when, as a federal employee, it affects me more directly than most.  And then again, if I mention something happening in my native UK, I’m dismissed as someone who hasn’t lived there for years.  If I try to explore what is happening in South Africa, the country where I now live, I’m told I can’t possibly understand.

I don’t belong anywhere.  I feel for everywhere.

Like so many on hearing of the shooting at Sandy Hook, I thought of my own children.  Pudding is also in kindergarten.  It could have been her.

We don’t know why Adam Lanza killed the children and staff of Sandy Hook, but this hasn’t stopped intense speculation.  The media suggested that the shooter had Asperger’s Syndrome, and within days this association of violence, murder, and ASD was disseminated through news networks and across social media.  It didn’t matter of there was a formal diagnosis or not, here was a cause that people were willing to accept.  Blog posts have sprung up with family members outing their autistic relatives as potential mass murderers, and before long we have something like witch trials.  Facebook pages full of hate speech, designed to intimidate autistic individuals and those who love them.

Adam Lanza may have had Asperger’s Syndrome.  We don’t know.  But violence is not a criteria for that diagnosis.  Autism was not the cause.

I read many interesting rebuttals during the last week, but they still didn’t always sit well with me.  Many wrote that this didn’t happen because of autism, but rather mental illness.  Long before I became the mother of a child with Asperger’s Syndrome, I worked as a carer for adults with various physical disabilities and mental health problems.  I can honestly say that spending as much time as I did with people with such diagnoses as schizophrenia or bi-polar disorder, I felt no fear.  As is the case with autistic individuals, those with psychiatric disorders are much more likely to be the victims of violent crime than the ones carrying them out.  What’s more, both are far more likely to be the victims of violent crime than are neurotypicals.

On social media, I saw many parents who said they now feared to send their children to school, and were calling for armed guards.  I live in a ‘critical crime threat’ country, where my children do go to schools protected by armed guards.  Believe me, it doesn’t make me worry any less.

We do know that two of the child victims at Sandy Hook were diagnosed on the autism spectrum.  I can only imagine their parents’ heartache trying to come to peace with their devastation as innocent individuals are demonized for their autism diagnosis.  I’ve read several account of friends with autistic children fearing to send them to school- not because of the risk of gun crime, but the very real threat of bullying as a fall out from all of this.  There is potential for so many more victims here if we aren’t careful.

While I don’t want to get into a gun control debate, I have lived in a country where they were banned following a similar incident, and one where shootings are commonplace.  I know where I feel safer.

Perhaps having a more global perspective changes the way you view things.  One thing is certain though- I’m completely unable to distance myself from what happened last week.  I don’t know why this happened, but I know that unless we are careful with where we lay the blame, there is vast potential for many more innocent victims.

Sometimes you can only dispel myths with truth, hate with love, and the ugly with natural beauty.  Some friends created the Autism Shines Facebook Page as a way to challenge these misconceptions of autism.  I urge everyone to check it out, and perhaps contribute as an autism advocate or ally.

Written by Spectrummy Mummy

December 22, 2012 at 1:05 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.

Better

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Cubby got sick yesterday.  He started with diarrhea, went to lost appetite, and finished up at fever.  We had a stay-at-home day making the most of our new GIANT beanbag (only it isn’t beans and the kids adore the sensory experience) thing.  So there was too much TV and movies, with a little bit of drawing and writing practice, but mostly a comfortable day at home.

Then comes nightfall, and the illness kicked up a notch, as they are wont to do.  He was sick all over our bed, and the diarrhea became worse.  The fever got higher today.  It would abate when we gave him medicine, but then pick up again as it wore off.  The highest it got was 102.7.  In the week, we’d have been straight to the clinic, but at the weekend it gets trickier.  He didn’t appear dehydrated, but the diarrhea was more frequent, and he was definitely more miserable.

In the late afternoon, I changed his diaper and found blood and mucous.  Oops, should have done a warning earlier in this post, shouldn’t I?  I really hope you’re not reading this over breakfast.  Sorry.  Anyway, with that, the four of us were winging it to the ER/Casualty whatever you want to call it.  Last time I went there was with Pudding, and it had been a pretty bad experience.  Spectrummy Daddy pointed out the peanuts(!) scattered on the floor, and I wasn’t hoping for much better on this occasion.

But this time it was better.  They did chide me for only having a GP and not a pediatrician.  But I just took it, without pointing out that our GP knows more about allergies and anaphylaxis than anyone in that nut-infested clinic, and that we did have a pediatrician based in this very hospital, but he died and you didn’t tell us and when we called for an appointment the replacement had too many patients so we had to go elsewhere.  To the GP.

I also didn’t, having learned my lesson the last time, try to tell them about Cubby’s sensory issues, or his hyperactivity, how he could have ADHD, or he might have a dash of Asperger’s.  I kept mum, if you will.  This was much better.  He was just a three year-old having a very bad weekend, and we were just his average family looking for some help.  They found us a room quickly, and the doctor came not much longer after that.

The doctor examined Cubby, who only resisted slightly (progress!).  He decided Cubby was not dehydrated, and the bloody stools were a result of too much diarrhea, probably caused by an infection.  He wrote a prescription, and we were free to go.

Not much of a story, eh?  Well, for me the big story here is what I’m not mentioning.  Have you noticed I haven’t spoken of Pudding?  Pudding, who can’t stand to be cooped up in the house for two days, coped.  And Pudding, who hates the hospital, came along without a peep.  And Pudding, who used to crawl all over the floor and put everything she found in her mouth, sat in her chair and didn’t even notice the peanuts on the floor.  Pudding, who finds waiting rooms too much, waited.  Pudding, who finds the examination room a sensory nightmare, sat in her chair and drew Hello Kitty.

So, while it wasn’t the best weekend, it shows the leaps and bounds our girl has been making lately.  Not just in things she can can now do, but also in the things she no longer does.  Today could have been a hundred times worse.  Today I saw how things are getting better.  Now we only need to hope the same for poor Cubby.

 

Written by Spectrummy Mummy

October 14, 2012 at 9:11 pm

Juggling

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…I’m humbled by your ability to juggle…

…you’re obviously skilled at finding balance in your life…

…am in awe of your ability to handle so much at once…

These were comments on a recent post.  You know- the one with Hillary Clinton.  Yes, I’ll keep name-dropping, because it is now years since Hugh Grant smiled at me, and I need to bump up the star quality of this blog.

The last couple of weeks have indeed been just like a circus.  But I can’t juggle.  When I try to walk the tightrope, it becomes clear there is no balance.  You might think otherwise, because you don’t know what happened last week.  So I’ll tell you…

Last Saturday, there were two very important meetings that both Spectrummy Daddy and I had to attend.  There was nobody to take care of the kids, so I took them into work with me.  I’ve done this before, and the kds are usually happy there.  I have a TV and DVD player in my office for some reason, so that and playing with office supplies is generally enough to keep them occupied.

We bought some ready meals from the supermarket that we could heat at work for lunch.  The kids food was allergy-safe. but mine contained cashew nuts.  And because I had so many balls in the air, and my eyes were on those, I didn’t see until too late that Pudding had reached across to my food, scooped a tiny bit of sauce and stuck the finger in her mouth.

It was the first time she’d ever actually consumed cashew nuts.  Her allergy readings are from RAST tests.  Her face started to go red, and Spectrummy Daddy ran to get the epi-pen.  By the time he got back her eyes were swelling closed, and she’d got hives all over her face.

Her breathing was still normal though, and her lips and tongue didn’t seem swollen.  I held off on using the epi-pen, but her reaction was fast and serious, so I grabbed her and drove straight to the hospital.

It would be an entirely different post to write about how awful the hospital experience was for an already overloaded child who hadn’t been prepared to go there.  I was terrified, and I lost my mind.  When asked who her doctor was, I gave them the name of the pediatrician she had in Luxembourg when she was first born.  The one who told me that she “loves herself like a kitten” when I tried to question some of Pudding’s puzzling behavior.

The nurse asked if she had any other conditions.  I knew they were unlikely to have heard of Asperger’s, so I went straight to Autism.  And no, she hadn’t heard of that either.  Or ADHD.  At this point the doctor from the Consulate called and asked if I needed him to come.  Yes, I did.

They quickly administered an anti-histamine injection and oral steroids.  Her vitals were all normal, she never developed anaphylaxis…this time.  She responded immediately to the medication, and I took a photo to reassure Spectrummy Daddy, only I was shaking so hard I couldn’t manage to actually send it to him.

Image

In fact, 30 minutes later, we were free to go.  I was still shaking, but relieved.  As we drove back I remembered that I’d missed the meeting, and I’d left Cubby with Spectrummy Daddy.

It wasn’t so much that I felt the balls dropping, as I looked down and realized they were already on the floor.

I’ve had a whole week now, before writing this.  Time for things to return to our version of normal.  Time to let the guilt ease away, and learn the lessons I need to instead.  Like always keeping her environment allergy-free.  Like if the circus comes to town again, I’d better fly in some carnies to help out.  And by carnies, I mean grandparents (in the nicest possible way)!

Perhaps some mothers can manage this juggling thing better than I can.  But in that hospital last week, I knew I was holding on to the most important thing, and I wasn’t going to let her go.  Let the other balls fall as they will.

Written by Spectrummy Mummy

August 11, 2012 at 6:16 pm