Spectrummy Mummy

Asperger's, Allergies, and Adventures Abroad

Posts Tagged ‘sensory

Wordless Wednesday 09 Apr 14

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Written by Spectrummy Mummy

April 9, 2014 at 5:06 pm

A Life Less Ordinary

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I haven’t blogged much lately.  Ordinarily I don’t have much time: I’m a working mother raising two extra-ordinary children overseas.  But then the last few weeks have been far from ordinary.  In case you missed my last Wordless Wednesday, we had a visit from President Obama.

Leading up to that weekend, our regular life was put on hold, and working late and weekends became the norm.  We’d flown in the grandparents to take care of the kids, but even that is a change of routine.  All the things that typically punctuate our everyday lives were temporarily suspended.

The kids handled most of the disruption well.  Indeed, I’m always surprised when Pudding gets described as inflexible.  She handled the disruptions to her routines far better than her brother did.  I dare say far better than most 6 year-olds would. 

When my event was over and I gratefully shook President Obama’s hand, I was the one who wanted things to get back to normal.  I craved just spending time with Pudding and Cubby.

 When I asked Pudding what she wanted to do, she told me she wanted to go away on holiday.  Lately she and her brother have become interested in maps of the world: Botswana has become a favourite, for reasons they haven’t shared with me.

Cubby also wanted to do something different: to go to the movies.  We hadn’t done that since living in the US, where sensory accommodations meant it wasn’t just comfortable for us, but a place where we belonged.  Without sensory-friendly showings, I wasn’t sure we could get through a whole film.

We went to see Monsters University, and deliberately picked a 2D showing as early as possible on a Sunday morning, and as it turned out only one other family had the same idea.  I loaded my bag with the ear-protectors, snacks, drinks, and a Nintendo DS.  If you were watching me pack, you’d swear we were going a lot further than to the local mall.  

Once inside, I’d asked the kids to behave like they were on a plane.  It occurred to me that our children have flown many, many more times than they’ve been to the movies.  Somehow, our routines are the extraordinary.  We move every 2-3 years to a new home, school, country, even continent- and we take that in our stride.  Yet somehow every day activities are challenging to us.

Pudding was not at all interested in the movie, but she mostly sat, and was mostly quiet.  This particular movie was very loud, but she soon discarded her ear protectors, as did sound-sensitive Cubby.

We made it through the whole film.  Cubby loved it, and Pudding even watched parts of it in between playing her Hello Kitty game.  Spectrummy Daddy and I felt that we had earned a celebratory coffee at a nearby place that had just opened and we hadn’t tried before.

This is where Pudding baulked.  All her reserves were used up, her tolerance at minimum.  She wasn’t going anywhere near the café kiosk.  Believing the discomfort to stem from the noise of the machines, I offered her back the ear protectors, but she threw them in disdain, and the meltdown became very public.  Was this an autistic child being inflexible?  Or was she communicating to us that she has had enough?!

Spectrummy Daddy led her away to soothe her, while Cubby and I placed our orders to go.  Pudding returned and told me she didn’t want to go home- caught between enjoying the change of routine and not being able to handle it.  She really is my girl…

Thrilled by the excitement of a Presidential visit, I’m much happier to have it over and done with. Unable to go to a new coffee shop, she is perfectly happy to go on vacation to an entirely new place.

Maybe our routines are about living the extra-ordinary life, and we have to find our own ways to get comfortable with them.  Once again, I can’t help but notice that we are a lot more alike than we are different.  One adventure over, we are ready for the next.

 

Written by Spectrummy Mummy

July 8, 2013 at 10:10 am

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

Wordless Wednesday 13 Jun 2012

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Happy Wordless Wednesday, and an early Happy Father’s Day to Spectrummy Daddy, who has had to put up with a whole lot of head rubbing from Pudding since he decided to shave off his hair on a whim.

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Written by Spectrummy Mummy

June 13, 2012 at 10:05 am

Wordless Wednesday 16 May 12

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We’re over the biggest hurdle- actually getting her on the balance bike!

Written by Spectrummy Mummy

May 16, 2012 at 1:01 pm

Dummy

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“When you know better, you do better.” – Maya Angelou.

Not me, wise Maya.  Not me.  But I do make new mistakes in different ways.  And I do believe entirely in making mistakes.

When I was that insanely annoying woman who thought she knew best about parenting (before actual motherhood taught me all I needed to learn) I knew I wouldn’t let Pudding have a dummy (pacifier). Then more information came out about how dummies actually helped reduce the risk of S.I.D.S and I quickly changed my stance.  We would have pacifiers, but would give them up before long.

I admit to being a bit of a dummy back then.  I never picked up on how soothing a pacifier was to Pudding.  Oh, I knew that it could help stop the screaming when I couldn’t figure out what caused the screaming, but I didn’t see her intense need for oral-motor stimulation.

I stopped Pudding having her dummy at just after 18 months old.  Pudding gave up the pacifier without any difficulty, and I’m sure I congratulated myself well for it at the time.  I certainly didn’t respect how much more difficult it would make things for a child with intense needs and difficulty communicating.

 She began looking for other things to put in her mouth: crayons, play dough, anything she could find really. Pudding had pica, a disorder causing her to eat non-edible items.  We were lucky that she never did herself any serious harm, though I made more phone calls to poison control than I’d have liked.  That oral-motor sensory-seeking continues to this day, though more often than not she can be persuaded to bite on chewelry.

So the second time around, when I knew better, I did better.  I would avoid the dangers of pica and compulsively mouthing non-food items by allowing Cubby his pacifier as long as he needed it.  And he needed it.  Unlike Pudding, whose sensory system was under-responsive in her early years, Cubby was born sensitive and anxious.

He lived with a pacifier in his mouth.  I struggled to persuade him to use it just for sleeping, and from a very early age, he would hide them around the house.  Pudding took it upon herself as a sisterly duty to ensure that there was a dummy in his mouth at all times.  In fairness, his crying distressed her greatly, so consoling him would be soothing for her too.

Cubby has never experienced the pragmatic language delays that impair Pudding’s verbal communication, but as time has passed, I’ve noticed that it is increasingly difficult for others to understand him.  During OT we’d work on his oral-motor strength with blowing and sucking activities, but his low muscle tone seemed as pronounced as ever.

On to his third birthday party, where he didn’t have the strength to blow out his own birthday candles.  I made an appointment for a Speech and Language Assessment.  Now, only part of his articulation difficulties are directly caused by the pacifier, but using the dummy has certainly contributed.  With tongue thrust, swallowing difficulties and weakness of the orofacial muscles, it became clear that intensive efforts would be needed to help with his articulation.  The dummy had to go- immediately, and speech therapy sessions twice a week are the order of the day.

Cubby didn’t give it up quite so easily as his big sister, but he hasn’t made mention of his dummy in a few days.  I’m confident throwing them all out once and for all.  It is interesting sitting through another set of speech therapy sessions with another child, and working on completely different problems.

I’ve chastised myself for my leniency with the pacifier this time, just as I berated myself for the strictness that contributed to Pudding’s pica and sensory seeking.  But really, even the wisdom of Ms. Angelou wouldn’t help here.

When it comes to raising kids with different needs, when you know different, you do different.  Whether the outcome is the same or completely different, trying doesn’t make you a dummy, which is good, because we don’t need any more of those in our house.

Written by Spectrummy Mummy

April 23, 2012 at 2:07 pm