Spectrummy Mummy

Asperger's, Allergies, and Adventures Abroad

Posts Tagged ‘sensory

N is for Nearlytypical

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N is also for neurotypical, normal, and non-autistic.

I’m the mother of two children.  They are both verbal, affectionate, sensitive, intelligent, funny, devious, and have occasional problems interacting with others.  My daughter is diagnosed with an ASD (and ADHD), and my son isn’t.

When he was a baby, and Pudding had recently been diagnosed with Asperger’s, I enrolled Cubby in a sibling study.  From the first session (at 10 months old) they found some small concerns about his development, but he never met the criteria for autism.  He was found, at various times, to have difficulties with joint attention, anxiety, fine and gross motor delays, sensory issues, and low muscle tone.

In the last few weeks, we’ve seen some additional behavioral problems thrown into the mix.  He is becoming more aggressive, both at school and at home.  He isn’t responding well to discipline, and is explosively emotional.  In many ways, he is more challenging than his sister was at this age, and 3 was a tough year for her too.

Interestingly, some of the techniques we used on Pudding, work well on Cubby, and others he rebels against entirely.  He loves a social story, and enjoys routine, as well as being “talked through” what is going to happen.  We’ve had no success whatsoever in trying to modify his behaviour through positive reinforcement.

Whenever I see a study comparing a group of autistic individuals against a control group of neurotypicals, I question if it is as simple as that.  Of course, autism is a spectrum, a diagnostic grouping of symptoms that describe a vast range of individuals.  I only have to collect Pudding from her preschool to witness how vast that range can be, and how severe some of those challenges can present.

But the similarities between these siblings seem to be more evident than their differences.  Cubby is a far more effective at communicating than his sister, both verbally and non-verbally, but she is more socially-motivated than he is.  While he isn’t autistic, it isn’t as simple as describing him as non-autistic, or neurotypical, or even (God forbid) normal.

I’m going to stick with nearlytypical for now.

All this was going over my mind as I couldn’t get to sleep last night.  The sheets were too scratchy, it was too hot for the heavy quilt, but there wasn’t enough weight with just a sheet and light blanket. It was too loud outside, and too light inside.  Maybe one day there’ll be a sensory spectrum.  Until then I might call myself nearlytypical too….though Spectrummy Mummy fits me just fine.

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

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Written by Spectrummy Mummy

April 12, 2012 at 2:32 pm

Wordless Wednesday 22 Feb 12

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Image

Well, my camera is still broken, so I delved into the archives to find one from this time last year.  I managed to catch a moment of sweetness seconds before Cubby started screaming at the proximity of his sister.

Written by Spectrummy Mummy

February 22, 2012 at 3:31 pm

Happy Hands

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“Mummy, look: she’s got happy hands!”

Pudding and I had returned from an appointment, and Cubby was observing his sister.  And he was right.  Spot on.  Pudding was flapping, but her hands were unmistakably happy.  She gets flappy when she’s happy.  She also gets flappy when she’s frustrated, or anxious, or overwhelmed, or terrified, but those are all different flaps.  If you pay very close attention, you can tell the difference.  This was a happy one.  He knew.

Cubby flaps too.  As he gets closer to 3, I’m pretty sure that he flaps like his sister, and he flaps to be like his sister.  So essentially I’m just as certain about not understanding as ever I was.  There are times when he deliberately imitates his sister: he watches her flapping and joins in.  At other times, it is an unconscious reaction.  He flaps for the same reasons she does.

I flap too.  Less than either of the kids, and so infrequently most people don’t observe it.  I flap at extremes of emotion.  Which emotions?  When I’m especially frustrated, or anxious, or overwhelmed, or terrified, or happy- just like my little ones.  I don’t consciously flap: no sooner have  I realized I’m flapping than I stop.  It is almost like I’m overwhelmed by emotion, and it takes me out of myself for a few seconds, and in that time, my hands have their own plans.

So what are my hands’ plans?  I don’t know.  Maybe there is in fact a purpose to this automatic and subconscious gesture.  This could be my brain’s way of calming me down when faced with an unexpected feeling, in the way that my eye will blink when an unexpected foreign body enters.  Pudding and Cubby have a much greater degree of sensory dysfunction, and the world is therefore a much more unpredictable place.

But Cubby’s comment intrigued me, because it is entirely possible to read what she is feeling by the flap of her hands.  What if this is also an instinctive communication tool?  At those moments when our communication is challenged, the hands take over.  I don’t know if this holds true for me- if by observing my hands alone you could tell if my agitation was due to a positive or negative event.  I just know what always holds true: that behaviour is communication.  Even if all I’m saying is that I need a moment or two before I can speak.

Cubby has the gift of being able to express himself much easier than his sister.  But he has another gift: he is attuned to her.  He understands how she expresses herself.  Just like any other siblings, their relationship isn’t perfect, but there are moments they make my heart flap.

 

 

Written by Spectrummy Mummy

February 21, 2012 at 4:01 pm

Showstopper (at Hopeful Parents)

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Though there have been times I felt like calling my agent because I didn’t like the way the script was going, I can’t really see myself playing any other role.

Just beware of scene-stealing elephants!
Hopeful Parents

Read the post >here< at Hopeful Parents.

It started out as a romance.  A pretty cliched love story, actually: boy meets girl, boy sweeps girl off her feet and whisks her off to distant lands.  Before they knew it, a baby girl came along and the script had morphed into a screwball comedy.  This was hackneyed fish-out-of-water stuff.  Adding a baby boy moved the family straight into a farce.

Then there was a twist: a diagnosis- this was special needs parenthood.  A showstopper.  It couldn’t be a comedy any more, could it?  Surely the next scenes had to be gritty.  A kitchen sink drama.  Moody stuff, filmed only in black and white.

Maybe, for a little while.  But what if that was just one scene?  What if the story continues in glorious technicolor, with joy and laughter, and plot developments we never saw coming?  Perhaps as the camera keeps rolling it can return to comedy, or romance, or even an action adventure.

Last week, we drove an hour away from our home in Johannesburg to a wildlife reserve.  We fed a family of elephants.  The kids reserved at first, then curious, then brave, then gleeful.  Picture a baby elephant raising its trunk, and Pudding reaching out her own arm in wonder, then tentatively stroking.  It was a sensory experience like no other.  After a few moments of silent greeting, Pudding raced off to place carrots between the “lips”.

My girl who struggles with social interactions with her own species was instinctively communicating with another.  Then the elephant- scene-stealer that she was- sneezed on Spectrummy Daddy.  You didn’t need canned laughter for that piece of improv!

There are some things you can’t capture on film, but these are the very scenes you will never forget.  The diagnosis wasn’t the end of our story; it wasn’t even the beginning.  There’ll be more tear-jerking moments, suspense, and side-splittingly funny times.  Forget what they say about never working with animals or children: the show must go on!

Written by Spectrummy Mummy

February 19, 2012 at 12:56 pm

Posted in Hopeful Parents

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The Mermaid Swims

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I’ve written many times about how alluring water is to Pudding, how she finds peace pouring and bathing in the stuff.  But the problem for my mermaid is safety.  We have a pool, as do many of the homes here.  The number of deaths of foreign service children by drowning used to far exceed those of the general population, and anti-climb fences have reduced those grim statistics in recent years, but for an impulsive child who doesn’t fear the water, and can move a chair to a different room and unlock doors, we can’t afford to take chances.  Every time I looked out at the pool and the potential for danger, my breath was caught as I thought about the potential danger.

This had to be our project over the summer holiday.  The problem is, I’m not the strongest of swimmers.  My own techniques aren’t so great, and it took me a really long time to learn how to swim.  I wasn’t going to be the best teacher.  And Pudding, with her attention problems and sensorimotor challenges, isn’t the easiest of people to teach.  Fortunately, I found a children’s swimming instructor nearby who is also a physiotherapist- a perfect match!  Unfortunately our schedules only permitted four one-on-one sessions.  Still, I hoped to pick up tips from her that we could use at home, now that it is hot enough to go swimming outdoors.

Pudding took to her new teacher instantly, but still had huge problems following her directions and resisting her impulses.  We agreed the most important (and most difficult) task, was to tackle these challenges, by playing to her strengths.  Pudding likes songs and has a great memory, so her teacher adapted rhymes like Humpty-Dumpty to promote safely getting into the water.  By the end of the first lesson, she could doggy paddle a very short distance unaided, and was learning to wait until told to enter the pool.  Okay, she wasn’t so good at that part.

On the second session, Pudding had no interest in repeating her efforts from the week before.  Somebody had found her buoyancy, to our delight!  She adored the feeling of floating on her back, but her vestibular issues kept her from leaning far enough back.  This time her teacher used Pop Goes the Weasel to flip from her front to her back, and then back again.  Things were starting to come together!

That same week we went on an overnight trip to a man-made beach resort/water-park called Valley of the Waves.  Apparently half the country had the same idea.  It was packed and crowded, so instead of relying on her developing water skills, I put Pudding back in her swim vest.  By the time we were all getting swept off our feet by six foot waves, I was glad I made that call.

However, when we returned for her next lesson, she couldn’t find her buoyancy.  The artificial support of the swim vest interfered with her ability to sense when she was floating.  But then, when were we ever discouraged by taking a step back?  (Don’t answer that one).  We moved on to the challenge of submerging her head under water, a task we were able to reproduce every evening when she took a bath.

Wednesday was her last one-on-one lesson.  We’ll move to a small group class with other children with disabilities from next week.  She’ll also be going back to school next week, and I’m not sure how she’ll cope with extra distractions at the end of a busy day.

I knew it was time for me to take that leap off the diving board and continue working on things at home.  That day, while Cubby was taking a nap, we went in our small pool at home.  Just like with her teacher, we practiced all the components, using the same rhymes and rules for safety.  She sat by the side of the pool until we sang the song together to enter.  We played Finding Nemo with the poor old bath toy who no longer floats.  I was more comfortable teaching her, as she was learning.

Then it happened: she swam, unaided, the width of our pool!  She did it again, and again.  We’ve been in that pool together every day since, and she grows stronger every time.  She is a long way from using breaststroke or front crawl, but believe me when I say she has her own grace.  She might have needed a little extra support, and I might have needed to learn how best to give it to her, but this is another huge thing crossed off that list of things she can’t do.  A list that grows shorter every day.

The mermaid swims, which means I can breathe a little easier.

 

Written by Spectrummy Mummy

January 6, 2012 at 12:55 pm

A Very Pudding Party

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I was so excited that our December baby was finally going to have a summer party.  Those four years in the Northern hemisphere meant Pudding’s parties were always victims of the weather.  From

The cake was amazing- so glad I didn't make my own this time.

heavy rains to snow, it had always been a problem. Pudding doesn’t like to be indoors.  She is cabin feverish at the best of times, but add a party with all those people and change of routines, with no escape, and it is sensory overload waiting to happen.  I know what you’re thinking- skip the party, but there lies the problem- Pudding likes parties.  I know that this may change as she gets older, but my girl has been talking about her party since August, so I was determined to make it special for her.

Baking cookies before the party

This year, instead of allowing dysfunction of the senses to rule the party, I decided to make the party sensational, and give my girl all the delicious input she needs to keep her senses on an even keel.

So I was glad to be here in South Africa; my winter-born baby could be the summer girl she is at heart.  I planned an outdoor sensory feast, with Pudding as the gourmet.  We’d set up the bouncy castle, put out the trampoline, steer kids over to the swings and sand table, and have a big tub of tactile goo to play in.  Imagine then, my dismay when I woke up and found the weather site predicted storms the whole day through.  Ever hopeful, I checked 5 more sites, and the news was no better.

I racked my brains to come up with indoor sensory-based activities instead.  We put the bouncy castle on the patio area where it would be protected from the elements.  I found some Hello Kitty dough for tactile and proprioceptive play, together with real dough so Pudding could help me to make cookies before we got started.  She declined her weighted compression vest as it covered up her new Hello Kitty dress.  Still, her senses were in check, and the hardest part for her was waiting for the party to get started.  I requested her help with setting up the tables, a task she delighted in.

I was waiting for the sky to turn ominously dark, but it never happened.  The weather disaster never took place, and all those meteorologists were

Pudding balked at the blindfold, of course.

wrong.  However, it being Pudding’s party, there had to be some kind of disaster.  This year it was poor Spectrummy Daddy, who was suddenly hit by a nasty stomach virus and was out for the rest of the day.  In spite of running around in a frenzy, I managed to check in with Pudding from time to time.  We had our first 20 minutes or so where Pudding did her best to hide, and guests did their best to interact with her.  I promised that she would warm up once she was left alone, and warm up she did.  She was amazing!

Decorating cookies in the shape of cats and fives was a big hit.

The only time she dug her heels in was at the suggestion of wearing a blindfold for the game of stick the bow on Hello Kitty.  She wasn’t going to entertain such nonsense as even closing her eyes- how would she get the bow in the right place if she couldn’t see?!  She much preferred the cookie decorating activity, which was a hit with the other kids too. And who doesn’t enjoy eating their own handiwork?

In fact, the sensory elements to the party were by far the most enjoyed by all the kids taking part, and gave Pudding a chance to interact with others on her terms.  There was enough going on for her to wander from activity to activity without interruption.  So in the end, no storms, no meltdowns, just a happy little 5 year-old getting the party that she needs.

It was more than wonderful, it was sensational.  Just like our girl.

Written by Spectrummy Mummy

December 8, 2011 at 10:58 am

The Puppy Stage

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Cubby, my two and a half bundle of energy is in what I call the puppy stage.  I know this because he just bit me, and the last thing to bite me was a puppy.  The time before that, it was Pudding, when she was going through her puppy phase.  If you picture a puppy, wagging its tail in the air and nipping at your toes, you have my boy right now.  He is testing the boundaries, and looking for a reaction.  When he gets one, he finds it funny….at least until he goes on time out.

Last week his teacher talked to me about this behaviour at school.  He has been hitting and crashing his bike into other children, and then laughing at their reactions.  Oh dear.  As a spectrummy mummy, I hear hitting and crashing, and I think sensory.  He is looking for additional proprioceptive input, albeit in a very inappropriate way.  But when I think of him laughing at other children in tears as a result of his actions, I worry.

Cubby is my verbose child.  He understands emotions, and has demonstrated empathy.  He is the first one to tell me if somebody has wronged him, in what way, and how that makes them naughty.  Unlike children with a language delay who lash out in frustration, he can use his words to express himself.  So why has he started to do this?

Is is Sensory or Behaviour?

If you haven’t read it yet, I recommend you take a look at Hartley Steiner’s post  on this very topic.  Cubby’s advantage in life- his verbal skills- might actually work against him in this instance.  I know I’m probably guilty of expecting too much from him.  The ability to communicate well doesn’t preclude him from feeling overwhelmed in a new social situation.  The demands of preschool with intense social interactions, and new sensory experiences might certainly be more than he can handle.  I made my long overdue contact with an occupational therapist who specializes in sensory integration, and mow we’re waiting for an appointment.

Like a puppy, my boy is exploring his new environment with all of his senses.  Like a puppy, he is testing the boundaries.  The problem though, is that until recently, Cubby spent most of his time playing with the only other member of his litter: Pudding.  Unlike most puppies (or children), Pudding doesn’t always respond in an expected way.  Sometimes he would hit her and she wouldn’t notice.  Frequently she would laugh.  Sometimes, but quite rarely, she would hit him back.  The same action on his part gets a variety of reactions.  Often the only way to get Pudding to react to him was to get physical.

When Pudding went through this stage, I was the other member of the litter, and every time she bit or hit me, I reacted consistently.  She learned very quickly that she shouldn’t hit or bite.  Cubby’s learned behaviour is off, as a result of being a younger sibling to a child on the spectrum.  He is taking what he learned through interacting with his sister and applying that to others.  Something tells me that this puppy stage is going to be harder this time around.

Whether motivated by his sensory processing difficulties, or an atypically learned behaviour, the challenge now is to guide Cubby to more appropriate interactions with the people around him.  The good news is the both puppies and little boys can be encouraged to adapt and respond to sensory stimuli in a socially appropriate way.  Though I think our four-legged friends tend to be much more obedient.  Either way, perhaps I should buy a whistle.

Written by Spectrummy Mummy

November 10, 2011 at 2:30 pm

Posted in Sibling

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