Spectrummy Mummy

Asperger's, Allergies, and Adventures Abroad

Posts Tagged ‘sensory overload

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.

 

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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.

Adventures with Phineas and Ferb

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It is tough being the sibling of a child with special needs.  It is even tougher if you have some special needs yourself, in a similar-but-different way to your big sister.  Ask Cubby.  It seems like his formative years have been spent watching his sister in therapy, then having to go through the same thing himself.

So when your world is chaotic, and you don’t always have as much attention as you like, you tend to attach yourself to something that you really care about: a special interest.  A thing that marks you out from others.  A way of expressing yourself.  A way of being yourself, independent of all those other demands.

Cubby used to adore Thomas The Train/ Tank Engine, but as he has developed, he has opened up to other interests.  He likes cars (and Cars), super heroes, and Phineas and Ferb.

Although it is shown on South African TV, I had no idea Phineas and Ferb was big here until I heard they were coming to our local mall a couple of weeks ago.  I knew what we were going to do that day- we were going to meet them!

I collected Pudding and Cubby from school, and explained to them what was going to happen.  I explained that there might be bright lights and loud noises.  Probably lots of people and waiting in line.  They still seemed game.

When we got there, I knew it was an experiment in sensory overload.  We waited gingerly on the periphery as I tried to figure out a plan of action.  The queue was pretty big, as families waited in line to get their photo taken with Phineas and Ferb.  It was free, so some older kids had wised up to this, and kept cutting in to go round and round again.

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All fun and games for Phineas and Ferb until we spectrummy three turn up.

Cubby made it clear that he was not going home, and Pudding seemed to be okay too.  We joined the line.  I tried to make as much space around us as possible, as we don’t like being touched by strangers.  That isn’t the majestic plural either- I hate it every bit as much as my kids.  Of course, some scheming local kids decided to take advantage of the space around us by filling in the gap, but as long as we made it (eventually) to the front, I wasn’t too concerned.

One of the unfortunate aspects of hypotonia, is that Pudding and Cubby’s muscles tire easily (except when I want them to tire out, of course), which makes standing around for a long time particularly uncomfortable.  They decided to lie down, which didn’t exactly help with the whole people cutting in front of us thing.  Nor did it do wonders for my stress levels, but we somehow made it to the front unscathed.

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What, you are tying to touch me back?! 

 

I had assumed that Pudding wouldn’t want to actually meet Phineas and Ferb, but she surprised me by telling me that she would- and that she was going to touch them.  For a tactile sensory-seeker, there is no concept of not touching giant felt people.  What she hadn’t counted on, however, was that Phineas also wanted a hug/ handhake/ high 5.

No.

Only Japanese cats with no mouths would be granted such largesse.  As she explained to Phineas, Ferb, and the rest of South Africa:

“NO YOU*DON’T WANT PHINEAS AND FERB- YOU* WANT HELLO KITTY.”

Pudding still has a lot of trouble with her pronouns, but I don’t discount the possibility that she was actually commanding the promoters and people of Johannesburg to replace this duo with her esteemed special interest.

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You might thing this is bad photography, but I swear this is what it looked like.

 

A couple of women rushed on to the stage to help out, but unless I wanted things to get really out of hand, the only way to calm things down was to scoop Pudding up and remove her from the stage.  I was going to let Cubby have his moment!

I left a bewildered Cubby to hold hands with his heroes and have his picture taken.  It was awesome too- but I can’t find it anywhere.  Afterwards we found some beanbags to crash on.  The kids got the proprioceptive fix they needed, and after a few moments, we were all regulated again.

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Take that- sensory overload!

 

We were all calm enough to draw on special Phineas and Ferb paper.  Again, Pudding chastised a confused staff member for not having Hello Kitty paper.

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Ooh, you can see his photo in this picture- told you it was a good one!

All was well.  My breathing had returned to normal.  Pudding decided to tell me then that it was,

“…Pudding’s turn.  Want to go to Hello Kitty now.”

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She knows what we’re going to do today!

And you know, she was right.  Because it is tough being the sibling of a child with special needs.  It is even tougher if you have some special needs yourself, in a similar-but-different way to your little brother.

In our never-ending game of ping-pong, in which we parents are the ball- it was Pudding’s turn to be served.  I’ll tell you about that tomorrow.

Backbone

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I might have done it at any point during the last week.  It might have been as Pudding climbed up my body and held on tight as she refused to go to school.  It might have been any day I had to scoop up Cubby to take him home from Pudding’s school, because he wanted to stay there.  It might have been bending down to put on shoes, or picking up discarded toys.  It might have been pushing Pudding on her indoor swing to get the vestibular input that she needs.  But I think I hurt my back on Tuesday.

On Tuesday I’d gone with my another mother to a playgroup with her kids.  She thought Cubby might enjoy it too, and she was right.  The class was run by an occupational therapist, designed to get toddlers involved with sensory-motor play.  Pudding is only in school in the morning, and I wasn’t sure how she’d do in the class, but we went along away.

Almost immediately, Pudding was overloaded.  It was busy and over-stimulating.  The room was filled with toddlers and their mothers, and all over the walls and hanging from the ceilings were props from that week’s theme: nursery rhymes.  Pudding ran around to touch everything, which was the whole idea, but Pudding doesn’t know her own strength, and I had to leave Cubby as I trailed around making sure she didn’t break anything.  It was time to sit down for the class, and Pudding didn’t want to sit.

The music began.  It was loud.  Too loud for both my kids.  Too loud for me these days, feeling every sensory assault for them, even if my senses are perfectly in sync.  Cubby spied some toys outdoors and began hammering on the patio doors to get out.  I was still holding Pudding down, and unable to bring him back to the circle.  Eventually I made myself heard over the music, and by some miracle he returned.  There were songs and dances, and soon Cubby was participating, so we stayed.  Pudding quieted down and remained on the mat beside me.  Then it was finally time for outdoor play.

All the kids stampeded outside, but for one: Pudding.  She was curled up in the child’s pose, her arms wrapped around her head.  The din was too much for her.  I stroked her hair, and asked her to come outside.  She didn’t hear me.  She’d protected herself by withdrawing.  I pulled her into my lap and she closed her eyes, her senses too confused to adequately protect herself from the onslaught.

I needed to get her away from the noise.  I picked up all 50 pounds of my incredibly tall 4 year-old, and carried her outdoors.  Instantly she was better, but I paid the price as I pulled the muscles in my back.  It still hurts if I bend down, twist my spine, or lift something up.  I don’t know about you, but I’m always bending down, twisting, or lifting something, or someone up.

If you are a caregiver, the chances are that at some point, you will hurt your back.  Perhaps your loved one has a physical disability, and you help to move them from the wheelchair to another chair or bed.  Maybe you are a carer for someone like my girl, who has balance problems, and seeks support by hanging around your neck, throwing your center of gravity off.  It could be that you are at times hugging or carrying your child as though they are still a baby, only they weigh several times what they did as an infant.

In the last few months, life has been hectic.  I’ve slipped with the one thing I shouldn’t: taking care of myself.  I didn’t bring any workout videos with me in the air baggage.  I intend to join a gym as soon as the kids are both settled in school, but we’re not there yet.  It will absolutely become a priority now.  The kids are depending on me, perhaps a little more than most children depend on their mother.

At least this was only a minor injury, and I’m sure to recover very soon.  I’m glad for the reminder to take care of myself, keep myself healthy, both emotionally and physically.  I’m the backbone, the support for the family, and I intend to be that for as long as I have to.  I need to be strong.

Written by Spectrummy Mummy

August 28, 2011 at 2:32 pm

American Girl and Boy

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“I have survived the American Girl store experience. I am bloodied but unbowed.”

My husband’s Facebook status yesterday evening.

American Girl

After a month of earning tokens, Pudding finally got to bring her Kelly doll home.  As one last treat, we’d arranged her to have dinner at the American Girl Bistro.  We’d used a velcro calendar system to count down the days, and by the time it came around, Pudding was buzzing with excitement (and with her very own little cocktail of autism and ADHD).

I told the kids that the day had finally arrived and we were going to go to American Girl.  Cubby immediately announced that he wanted to go to American BOY!

Now once upon a time, back when I was an Idealist, I’d have been horrified at such entrenched gender stereotypes as my children were displaying.  I would buy books and blocks for Pudding, steer her away from Barbies and other dolls.  But every time we went for a play date, she would gravitate towards dolls.  From the first day she could state her preference, she announced pink was her favourite colour.  She would wear dresses only.  She loved princesses.  She was a girlie girl, despite my best efforts.  Like many things, I soon learned that I couldn’t steer this child- I was along for the ride.

American Boy

Her apparent femininity was sometimes at odds with her personality.  She was always hyperactive, and she loved running and climbing.  She loved chaotic environments, and being with other kids.  She was also the toughest kid I ever met.  She would fall a lot, but rarely cry.  I didn’t know at the time that this hypo-sensitivity was a symptom of her autism.  I was just bemused by this tomboy-meets-princess.

And then along came Cubby.  I assumed that growing up in such a girlie environment, he’d play with the dolls and princesses too.   But very early on he expressed an interest in firetrucks and trains.  And unlike his tough cookie sister, Cubby overreacted to most sensory input.  He seemed delicate and fragile; preferring peace and quiet, he shied away from other kids.  Thanks to early intervention, he is far less defensive these days, but most days he is still the polar opposite of his big sister.

Nothing teaches you about gender stereotypes like actually spending time with young children.  By the time we learned how difficult it could be to engage them, we were happy to use any and all interests to play with them both.  I let them choose what those interests are.  I let them choose who they are, even if that doesn’t quite match with all those good notions of parenting I had before I was actually a parent.

Armed with a train set for Cubby, we reached American Girl with a prancing Pudding.  She galloped around the store with her new doll, smothering her in hugs and kisses.  The wait for the table was excruciating.  She was excited by the doll having its own special chair and cup and saucer.  She was excited by all the pink.  She was excited by all the girls and dolls.  Naturally, she was too excited to actually eat.  She hummed with pleasure.

When the server made an announcement for us to sing Happy Birthday to another girl there, Pudding wanted to join them for cake, and we had to explain that we can’t sit with people we don’t know.  To her credit, she returned to her seat.  We ate as quickly as we could in the face of imminent sensory overload.  Though she was dazzled by her surroundings, she made every effort to follow the rules for dining out.  We were bloodied, but unbowed.

To the average observer, they looked like just another American Girl and Boy, but forgive me for thinking they are so much more (they’re English too!).

Written by Spectrummy Mummy

July 28, 2011 at 8:04 am

Wordless Wednesday 06 July 11

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Just to show how hard it is to get a decent photo of my kids together!

Happy Wordless Wednesday.

Written by Spectrummy Mummy

July 6, 2011 at 6:44 am

Sensory Integration and the Autism Spectrum: One Woman’s Experience

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Regular readers know that I tend to stick to telling stories about my kids, and my experience raising them.  Our situation differs greatly to those of other families touched by autism, though of course, there are some strong similarities too.  One thing I’m always conscious of is that these are my own words, and not Pudding’s.  She may interpret this whole experience quite differently as she grows.  And sweet little kids with autism spectrum disorders grow up to be adults with autism spectrum disorders.  It is the lifelong part that we sometimes forget in our rush for early intervention.  I don’t want this month of Autism Awareness to pass without acknowledging that fact.

I can’t predict how she’ll be as an adult, but I do know that I’m incredibly fortunate in knowing some remarkable women on the spectrum, like Lisa and Laura.  When Pudding can’t tell me how strange and uncomfortable the world seems to her, I have the benefit of listening to their voices.  It is a gift.  One I’d like to share with you today as I invite Laura to take the stage to talk about sensory integration.  It is an honour to have her here today.  Please give her a warm welcome.
4 Aspies, 1 house, that's...Life in the house that Asperger built

Sensory Integration and the Autism Spectrum: One Woman’s Experience

:walks up to the lectern…shuffles papers…taps microphone:

“Is this thing on?  Oh it is! Ok…ahem… Hello, my name is Laura, and I have Asperger Syndrome.”

:audience responds:

“Hi, Laura.”

“There are a lot of things I could tell you about what it’s like to be an Aspie, the difficulty navigating social interactions, the communication struggles, and the intense focus on special interests.  Today, however, I’m going to talk about the problems with sensory integration.  Scientists are just now coming to understand, and measure the extent to which people with Autism Spectrum Disorders have difficulty properly processing sensory information.  We complain about things that most others don’t even notice.  For many, these things will just be bothersome, or uncomfortable.  For others, however, they can even be painful.  Each of us is affected differently by this.  My problem areas are primarily sound and touch.

I am extremely sensitive to the way things feel on my skin.  I don’t like the feel of flannel for example.  Believe it or not, it feels rough and gritty.  I can sleep on flannel sheets, but only in long sleeved pajamas with pants (made of either cotton jersey or fleece), and the pillow case has to be regular cotton.  I cannot put my face on a flannel pillow case.   Not only is it rough, but it’s too hot.  Also, regardless of the time of year, I must have a heavy blanket or comforter.  I need the pressure in order to get to sleep.  Otherwise, the sheets feel wispy and light.  They brush lightly on my skin, and that gives me the willies.

Light touch on my skin, generates in me the same reaction others have to hearing nails on a chalkboard.  And while we’re discussing chalkboards, I really can’t stand the feel of chalk.  It makes all of the hair on my body stand straight on end, just thinking about it.  My list of tactilely disturbing things is actually somewhat long.  In addition to what I’ve already mentioned there is:

  • The feel of someone softly stroking my hair, arms or back
  • Anything, except for shoes and the ground, touching the soles of my feet
  • Crisp, tight cotton blouses, specifically the sleeves
  • Limp handshakes
  • Someone resting their hand or arm on my shoulder
  • A light breeze against my skin.  On this one, I will actually put on a sweater even if it’s a hot, light breeze just because I don’t like the feel of the air moving across my skin.

There’s more but I think you get the idea.  Essentially, I’m super sensitive to light touch, and things that are tight or rough.

Sound is another area of sensitivity for me, but it is harder to quantify.  I definitely have a problem with things that are too loud, except sometimes “too loud” varies.  I’m always upset by sudden loud noises, and for some reason all of my sound sensitivities are magnified 10 times or more when I’m inside a car.  I can sometimes be affected by pitches that are too high, but I am more frequently disturbed by pitches that are too low.  Some men speak in very baritone, gravelly voices, and it just sends me through the roof!  Just like with touch, my reaction to these is just like that “nails on the chalkboard” feeling.  But that’s not really so bad, is it?  It’s just a momentary flash of the willies, after all, right?  No.  The real problems start after that.

All of my sensitivities, once triggered, lead directly to incredible feelings of physical discomfort, and increased stress and anxiety.  In some cases, this can be resolved as easily as taking off the offending article of clothing, or leaving the room.  Other times, however, it begins a cycle that can be difficult to stop.  Once my anxiety starts to rise, I become more sensitive.  That leads to more reactions, which is followed by more stress and anxiety.  As this continues, I get increasingly cranky, which then leads to increased difficulties in some of those areas I’m not talking about today, navigating social interactions, and communication struggles.  It’s this spiral, caused by my hypersensitivities, that causes me the most trouble.

Not all sensory integration problems involve hypersensitivity, however.  Some involve being less sensitive than average.  In my case, I’m hyposensitive to taste.  It’s not that I can’t taste, it’s just that I don’t taste as well as everyone else.  For example, it’s been determined that I can’t taste bitter at all.  This actually proved to be a good thing for my mother who had her hands full with everything else going on with me.  Unlike, many on the Spectrum, my lack of tasting ability meant that I wasn’t ever a picky eater.  My mom put the food in front of me, and I ate it.  Not all hyposensitivities however, work toward the greater good.  There are some, like my daughter, who don’t feel pain as acutely as they should.  This can lead to dangerous consequences that require an incredible level of diligence on the part of caregivers and loved ones to prevent.

Issues like these are dealt with daily by people on the Spectrum, and those who love and care for them.  It is my sincerest hope that sharing this with you here today might help someone better understand a loved one, or feel less isolated in their own experience.  Thank you.”

:takes papers…leaves stage:

Written by Spectrummy Mummy

April 14, 2011 at 6:55 am