Spectrummy Mummy

Asperger's, Allergies, and Adventures Abroad

Posts Tagged ‘parenting

Lies Cubby tells

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Pudding is a mostly truthful person.  She has told a couple of lies, so we know she can lie, but she just doesn’t seem to see the value in untruths.  Perhaps that is another hidden virtue of her autism diagnosis.

Cubby, on the other hand, just loves to lie.  In fact, he rarely tells the truth.  For the most part, they are so outlandish that we aren’t fooled for a moment.  Here are just a few examples:

I speak Polish.

I’m a Chinese person.

Pudding hit me.  (She wasn’t even at home).

I have a baby in my tummy.

Mummy, do you remember when the elephant squashed me?

I fell down underneath a elevator.

I just got back from holiday in Cape Town (we’ve never been).

I killed Mummy.

Daddy is NOT Batman!  (This may be true).

I don’t want chips.  (Spoken with chips in his mouth).

So, just suppose there were some Oreo-style cookies, and Cubby walked in with this face, you might have known better than to ask him if he’d eaten said cookies:

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Don’t worry, he assured me he hadn’t touched them.  And he has such honest eyes!

Written by Spectrummy Mummy

May 3, 2013 at 4:37 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.

Wordless Wednesday 30 Jan 13

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Okay, I’m adding a few words just so you can get some context.  This photo, kindly supplied by Pudding’s teacher left me speechless, which is a kind of wordless. 

This morning, I posted this on my Spectrummy Mummy Facebook page:

When it comes to Show and Tell, Pudding prefers to adopt a Don’t Ask, Don’t Tell policy. We’ll see if she wants to explain why there is a Luxembourg flag in her backpack today.

And then her teacher emailed this:

Show and Tell

With these words:

Pudding did her first real show and share today…so cute!

It’s the first time she wanted to go up…I thought it might be a Welsh flag, but she corrected me and told us that it is from Luxembourg. 

Your girl is amazing…just love her 🙂

If you are familiar with Pudding’s challenges, you’ll probably share my joy.  If not, let me tell you that this is the picture of an everyday miracle. 

By the way, yes- she came from Luxembourg, but the really amazing thing is gettting to see where she will go.

Written by Spectrummy Mummy

January 30, 2013 at 11:44 am

Comfort Zone

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In case you hadn’t dropped by lately, this blog has been pretty quiet this year. For someone who normally has an overabundance of words, I’ve hidden behind pictures.

The day after Christmas, I lost one of my closet friends. Even as I type know I feel a pain that I can’t find the words to describe. Rachael was truly one of the best people I have ever known. I’m mad that she was only in my life for twenty years, but I cherish every moment we shared.

She made a disability advocate of me years before parenting would take me that extra step. The world was a better place for having her in it, and I will miss her for the rest of my life. She would have been 35 tomorrow. In the midst of grieving, we had another sudden death in our Consulate community. I’m once again lost for words, and without my outlet, I find it hard to process all this loss. I can’t make sense of the senseless.

Without writing, I am out of my comfort zone. I turned to the next best thing- my camera, and tried to content myself with viewing life through a lens. But there is always more going on outside of the frame.

In the midst of all this, Pudding has truly found her place. She is reaping the rewards of all the support and effort that goes into teaching a different thinker. My girl is reading! Not just odd words and signs, brand names and adverts. She is reading books, and learning to write her own stories.

My biggest wish for her- that she can narrate her own life story- just took a huge leap forward. She will have words. They will delight her, they will inspire her. They will give her comfort when needed. And she will own them. She will own her story.

Last week I met with the Director of Teaching and Learning at Pudding’s school. She asked me if I would take part in the conference they are holding about inclusion in international schools.

I was overwhelmed with anxiety. I can’t do public speaking. I express myself best through the written word, I couldn’t even imagine talking in front of that many strangers. This is way out of my comfort zone.

But how can I not? How can I not persuade other international schools embarking on a journey of inclusion that they need to develop programs for children like mine? They need to open up their doors.

They need to get out of their comfort zone, and so do I. I sought permission from my boss, and he went one better- he offered me his support. He reminded me that what might seem like weaknesses can be our biggest strengths.

I don’t mind stepping out of my comfort zone, if it means helping to persude more schools to do the same thing.

Written by Spectrummy Mummy

January 25, 2013 at 1:04 pm

Mother Like Me

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After yesterday’s post, I had some people question why I didn’t react more to what happened during our flight.  It is a valid question, and one that had whirled around my own head ever since Saturday.  You see, my instinct was to protect my children.  Adrenaline was coursing through my system, and my body felt like it needed action.  My brain even pictured the various actions which would have satisfied it- all were physical, and all of them would have landed me in trouble with aviation security.  But I wasn’t thinking about that.

I was thinking about what the children would do if I raised my voice, or had a physical altercation, or even moved to argue face to face with the man in front.  Pudding had already had a meltdown over the change of seats.  A meltdown during which she became violent, briefly clawing at my face with her fingers.  Pudding is not usually an aggressive child, but she already felt threatened, and was lashing out. And this was with me being calm.

If I get worked up, if I raise my voice, if I give in to strong emotions, it is absorbed and reflected back at me by two people who need me to stay in control.  That isn’t to say that I never get angry, or I’m always in control of my emotions, but I do know that when I explode, so does everyone around me.  And I really didn’t need that.  Nor did the rest of the passengers crammed on to that painfully full flight.

Well, all apart from one, that is.

Before I actually confronted him, calmly, I’d spent several hours with Pudding and Cubby sleeping on me, peacefully oblivious to the barely-contained rage I was feeling.  Any parent who knows this forced calm- and I’m certain there are a few of us with children on the autism spectrum- know that this inertia is a hundred times more difficult than acting on our feelings.

We do it, because we can.  They can’t.

We can take a deep breath, calm ourselves down, refuse to let things escalate.  My kids don’t know how to do that yet.  They are learning, and like with many of life’s lessons, they need them modeled time and time again.  Even when there are jerks within hitting distance who totally deserve it.

Now, maybe you have children who don’t follow your every move, hear every word you say (even if they conveniently don’t pay attention at times), or detect every change in your pitch.  That way you don’t risk the same consequences.  Maybe you haven’t had years of learning to show Zen when you feel anything but.  I’m glad for you, and I’m jealous of you.  You don’t have to hold it all in until you find a suitable outlet.

Believe me, it gets hard, when you mother like me.  Certain situations are just harder.  But at least when the gory fantasies (I’m always like Buffy the Vampire Slayer in my daydreams) I had of what I could do when the plane touched down and the kids were handed off to the husband didn’t get to come true, I can always write about it here.

Because some how, some way, this stuff has to come out, if you are going to mother like me.

Written by Spectrummy Mummy

January 8, 2013 at 6:01 pm

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

Bye, bye, balloon

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IMG_2806We’d gone to the mall to get balloons for Pudding’s party.  Spectrummy Daddy had another chore to do, so we divided the kids with the aim of meeting back at the balloon shop.  That was Spectrummy Daddy’s first mistake, because with no voice of reason, I happily purchased 28 helium balloons.  You read that right- 28 helium balloons.  And just one car, with four passengers.  I never was good at maths.

But before he got back with the sensible question of how we were going to get them home (I voted for Up style to float our car home), Pudding had

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spied a big Hello Kitty balloon, which just so happened to be wearing the same outfit as the Hello Kitty on her outfit.  With nobody to tell me otherwise, I knew it was meant to be.  I tied it to her Hello Kitty bag so it wouldn’t get lost on the way back to the car.

Spectrummy Daddy and Cubby returned after it was too late to do anything about the number of balloons.  There were so many that I got bored waiting for them to be filled, so I offered to take the kids back to the car while he waited for them.

Which also meant that he was the one who got to look like a clown as he walked through the mall.

We got to the car, I unlocked it and opened the trunk (boot).  Pudding deliberated putting her Hello Kitty in the front, and then I suppose decided that keeping it in the trunk/boot was a safer option, so she carefully laid it down in the trunk.

As I went to help, the car key in my hand stabbed Hello Kitty in the back of the head.  There was a loud pop, then we watched Hello Kitty fold into herself.  Laid out like that, it looked like a corpse in the car, taken out hitman style.  I imagine.

But Pudding didn’t go into hysterics- just calmly told me that we had to fix it.  She’ll make an awesome gangland boss one day.

If Spectrummy Daddy disliked carrying the balloons through the mall, he even less enjoyed trying to stuff 28 helium balloons into our sedan.  We all squashed in, and there was barely room to breathe, which was just as well because you know our voices would have come out like Mickey Mouse.  At least if we’d had an accident, there’d have been extra air bags.

Cubby, ever the master of understatement, pointed out that we had a balloon car now.

Later that day, I’d done my best to salvage the balloon with tape.  Cubby was sleeping, so I offered to stay at home while Spectrummy Daddy went to try a refill of helium.  Of course, it didn’t work.  I’d done far too good a job on my hit.

Spectrummy Daddy knew he couldn’t return home without it, so he tried to buy another.  But that was the last one of that kind.  They only had, of course, an EVEN BIGGER ONE.  So big, it has to have special weights put into the feet!

There was nothing he could do but buy it.  This massive Hello Kitty, bigger even than Pudding, who was the World’s Tallest 5 Year-Old, and hasn’t shrunk since turning six.

He had to walk all the way through the mall looking like Macy’s Thanksgiving Parade, and feeling dodgy thanks to the trail of little girls who were suddenly trailing him.  It was, I’m told, worse than 28 balloons.

But he got home, and it was worth it.  This balloon is so big it ‘walks’ of its own accord.  We have to keep it in the safe haven so it can’t set off our alarm.

But big is beautiful- just ask the newest Tallest Six Year-Old On The Planet!

Written by Spectrummy Mummy

December 6, 2012 at 4:13 pm