Spectrummy Mummy

Asperger's, Allergies, and Adventures Abroad

Posts Tagged ‘asperger’s

In Her Own Time

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We have another milestone, friends. Pudding is learning to tell the time. Pudding had no interest in learning how to tell time for…well, for some considerable time. We’d tried using her special interests, visual timers, crafting our own clocks, workbooks and ordinary telling time books, toys, apps, and any possible thing I could think of.

But it wasn’t her focus. I was looking at seconds, minutes, and hours, and Pudding was more fascinated by days and months. While I was busy in the details, Pudding once again took me by surprise and approached time from another angle.

Last June we met with a new doctor. Pudding asked him his birthday (and will now always remember it), and then she let him know what day it fell on. And then surprised us by knowing every date we asked her. She appears to have an exceptionally accurate mental calendar (and seems equally frustrated that the rest of us don’t!).

So now, days and months not only had meaning, but were meaningful to her. We add our activities to the calendar as much as we can.

But language, as always, was still confusing. As we cuddled in bed at the end of the day, Pudding would ask, “What are we going to do today?”

So’d answer that we would do nothing more today but go to sleep. And tell her what to expect for tomorrow, as much as we ever can.

One day last month, Pudding rose in her early-bird fashion, and reminded us that she was going to a party. Ah yes, I told her, but not yet, not for a long time. Later. At 3 O’Clock. 

And for some reason- that may or may not have to do with delicious birthday cake- this time, she wanted to know more. I’d show her my clock and tell her when the little hand was counting down the hours…8,9,10,11,12,1, then, 2, then time to go.

We found a Hello Kitty watch that happened to have hands with different colours. She wanted to wear it, and would answer when I randomly asked her the time.

This week, Pudding was finding school tougher than usual.  On Monday I collected her earlier, but after that, I asked her aide to use this new tool of time to help her get through the day. I’d remind her that I’d be there at 1, and she could see on her watch how close that would be. Her anxiety dropped away, and she could once again focus on her schoolwork. Not with ease, but with practice.

This incredibly useful tool that gives her more control to navigate her day independently. She doesn’t have the precision yet with telling time that she does with knowing dates, but I know we’ll get there soon. As useful as it is, this isn’t a milestone that could be hurried along the way. But like all the others, we’re getting there in her own time, in her own way. And not a second, minute, or hour before we need to.

Written by Spectrummy Mummy

February 26, 2015 at 5:31 pm

Wordless Wednesday 27 Nov 13

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Thankful

Written by Spectrummy Mummy

November 27, 2013 at 5:03 pm

Another Diagnosis

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Not my favourite ever Pudding picture.

Not my favourite ever Pudding picture.

Today I woke Pudding up.

I could count on one hand the number of times I could have used that sentence.  Sleep has always been a challenge in our house, but over the last few weeks, things have been worse than ever.  We’ve been starting the day at 3 am.  I don’t function so great at ridiculous O’Clock.

Living at altitude seems to be particularly challenging on the respiratory system, and after struggling night after night with her breathing, we finally determined the cause:  asthma.

It comes as no surprise to me.  I was diagnosed with asthma in infancy.  It runs in my family, and is strongly associated with the severe allergies that also plague Pudding.  Every time we’ve visited the doctor, every place we’ve ever lived, I’ve always had them check her lungs.  Until a few months ago, I’ve always been able to breathe a sigh of relief.  Then the doctor heard a wheeze, and it got worse from then on.

In the last few weeks she has been so disturbed by coughing that sleep has been even worse than usual.  I didn’t need a stethoscope to hear her wheezing, and even anti-biotics couldn’t clear up the persistent bronchitis.

So last week we got that initial asthma diagnosis, and along with it the medicines that would help her to breathe.  Every night has been a little better than the previous, and then finally last night we were down to just a couple of interruptions, and the longest sleep in quite some time.

We don’t know if this is a reaction to living here.  It could be the altitude, the incredibly dry winter, the many allergens specific to Southern Africa.  We probably won’t know until we move.  Or it could be that she was genetically pre-destined and this was going to happen sooner or later.  I could have used later, but at least we got to 6.

The good thing is that she is responding well to the medication, because there are few things scarier than watching your child gasp for air.  In fact, the medication is so effective, that she asks for it, and hasn’t even put up a fight about the strange-looking spacer that helps her breathe in her inhaler.

I don’t exactly want to add another disgnosis to Pudding’s collection, but at least with this one, I’m on familiar territory.  I know how it feels, I know how to make it better, and I know what to do.  While there may never be a cure, there are plenty of effective treatments available these days.  She is doing better every day and even getting the colour back in her cheeks.

The only trouble is, she resembles me in another way too.  This kid is furious at being woken up!  Maybe I’ll make that Cubby’s job from now on.  We have an awful lot of sleep to catch up on now that we’re both breathing easier.

Written by Spectrummy Mummy

June 3, 2013 at 7:52 pm

I Can Cook!

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It was one of those lazy Sunday mornings. We were watching kids TV, a British show called, “I Can Cook,” in which a perky (they always are) TV presenter and a few stage kids make a meal together.
They make food together, and there is never any fighting or tantrums. Then they all eat the same meal and talk about how much they enjoyed it. They use words like “delicious” and “scrumptious” that make me think they are indeed child actors reading from a script written by a 40 year-old woman. But I digress.
Cubby was riveted as he curled up with me on our oversized bean bag chair. Pudding actually put down her iPad to watch. The presenter and child actors made it look so easy that they actually tricked me into thinking this was something I could do with my kids.

Pudding poking holes
A little later that day we’d collected all the ingredients to make cheese and vegetable pasties. I asked the kids if they wanted to cook like on the show, and was greeted with an enthusiasm rarely seen outside of all things Hello Kitty.
Cubby, my little literalist, decided he was going to be Arthur, one of the stage kids on the show. On I Can Cook, the presenter began by sprinkling some flour on the cooking mats for each child, as they carefully coated them in preparation for the pastry. We began by recklessly spreading said flour all over our clothes, hair, the floor, and even (in Cubby’s case) up his nose. We repeated step one, and this time I did not turn my back to put the flour away, and it mostly stayed on the table. Later I would come to regret not immediately putting the flour away, but I’d learn that lesson later.
Next came rolling out the pastry. In I Can Cook, each little chef has their own perfectly-sized utensils, and I think that is why there isn’t a blood bath on the show, which is my kind of reality TV. In our house, we have just the one rolling pin, which is great for adults. Actually, we may have a kids rolling pin that is gunked up from when I made play dough wrong and could never get it off again. But I digress.
Poking holes in pastryTaking turns is almost as difficult for my children as sharing, so here I knew I had no chance of success. But nobody was hit with the actual rolling pin, so we somehow made our way through Step 2. Simple step 3 was the not-so-simple task of gently prodding the pastry.
This time I had a fork for each child. What I didn’t have was kids with the ability to grade their pressure. Instead of gentle prodding which doesn’t quite pierce the pastry- fairy steps in the words of Perky Presenter- we made big giant troll holes, which we then had to reseal, roll out the pastry again, fight over the rolling pin again, and repeat. So eventually we kind of, in a fashion, sort of accomplished step 3.

Tearing Spinach
Foolproof stage four was ripping the spinach. Pudding loved this task- she loves a good rip. Cubby’s fine motor skills weren’t up to the task, and he very quickly tired of this job, trying to pass of whole leaves of spinach as ripped up. If this kid doesn’t become a lawyer, I’m not sure what he’ll do with his skills.
Then we get to the fun part: filling our pastry. I’d pre-made the ratatouille filling, so the kids just had to spoon it on, add their torn-up spinach, and sprinkle in the cheese. Cubby was good with all of this.
Pudding, however, does not do cheese. “You must not eat cheese, “ she likes to solemnly intone. Now she was faced with a dilemma: if she added the cheese, her mother would try to trick her into eating it, which she can’t do. If she doesn’t, she will miss the tactile sensation of (rolling, squeezing, and then ) sprinkling cheese, and she wouldn’t be making the pasties just like in the show. In fairness, we also hadn’t grown our own spinach in our hippy garden, or collected a salary for our efforts, but I digress.
She made the first one with no cheese, but then opted to conform to our pro-cheese agenda. I allowed this, against my better judgment, as I thought I was in with a chance of getting her too eat cheese. When will I learn?!
Of course, we completely overstuffed the pasties, but that was okay. In our house, we believe pasties come in all shapes and sizes. We’re rebels like that.
Pasties
In 15 minutes they were cooked, and 10 minutes after, I deemed them ready to eat. They weren’t. They were like molten lava inside. We all had burnt tongues that made us mad at pasties. But they were so “scrumptious” and “delicious” that we ate them soon after.
At least Cubby and I did. Pudding happily ate one until she encountered some cheese, then ripped them apart to try to pull out the offensive ingredient.
But, as Cubby announced just like those pesky paid-up members of Equity- “I Can Cook.” I Can! Even with my spectrummy pair helping out. And, you know, they tasted SO good that I might even do it again. But no cheese this time!

PuddingPastyCubbyPasty
So we might watch that show again. It isn’t as easy as they make it look, but we did have a lot of fun and practice some skills. Shame we didn’t have anybody filming though- our surreality TV is far more entertaining with a not-so perky presenter and the quirkiest of kids.

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February 14, 2013 at 8:59 am

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.

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January 25, 2013 at 1:04 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

IMG_2844

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

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.

 

Written by Spectrummy Mummy

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.

I Know

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Pudding was off school last week.  She doesn’t like being off school.  In fact, she loves being AT school, which is pretty awesome most of the time.

But not so awesome last week when she wasn’t there.  She is very anxious that we are going to stop her going to school, so she doesn’t trust that  break will only be temporary.

She wanted to see her friends, and her teachers, and seemed to be under the impression that the more she asked about them, the faster time would pass.  Which is weird, because it seemed to work the opposite for me.

“You’ll go back to school on Monday,” went my litany.  Over and over I said it.  I didn’t even think abotu what I was saying, I just repeated myself over and over.  My own echolalia.

What you might think I’d have made certain of….what any sensible or rational person would do….and absolutely what every spectrummy mummy must do is, you know, have her facts straight.

Yep.

I know.

So, still thinking that it was Back to School Day, we went through the motions of getting ready.  And even though she didn’t want to get dressed, she would, because it was for school.  And even though she didn’t want to stop playing with her brother (I know!), she would, because it was for school.

We even went outside early so there was absolutely, positively no chance of missing that school bus.  What did it matter that I hadn’t dried my hair, put on make-up or retrieved that contact lens that had slipped behind my eyeball.  There’d be loads of time after I got her on the bus.

“I want to go to school.” She reminded me after 5 minutes.

“I know.”

I really did.  The bus wasn’t technically late yet.  No need to panic.  I don’t know where the other kids are who normally get on the bus.

I want to go on the bus.”

“I know.”

Ten minutes turned into fifteen, and it was definitely time to panic.  I needed to get back inside to check, but I was a coward.  I tried suggesting that she went to the bathroom.

“No.  I want to go to school.  Only to school.”

I know.

Finally Spectrummy Daddy comes out, having checked and found that school doesn’t go back until Wednesday.  He’ll take Cubby, I’ll take Pudding to her therapy centre.  I’m already late for work, but I know that if I don’t explain things to Pudding, it will be worse.

I know.

But I’m a coward.  I run upstairs where it is already too late to fix that hair or find that contact lens or well, forget about make-up.

So Spectrummy Daddy tells her for me.  But, you know, she accepts it.  There is no meltdown.  No tears.  No refusing to go to the therapy centre.  All the things I knew would happen just…didn’t.

So I was wrong about school, and I was wrong about Pudding’s reaction.  I might think that I know her, but I’m just starting to see what she is about…and I can’t wait to know the rest.

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October 29, 2012 at 4:43 pm