Spectrummy Mummy

Asperger's, Allergies, and Adventures Abroad

Posts Tagged ‘SPD

Wordless Wednesday 16 May 12

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

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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

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<.

Written by Spectrummy Mummy

April 12, 2012 at 2:32 pm

Wordless Wednesday 04 Apr 12

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Blowing out candles is harder than you think with low muscle tone.

Good job he only had three this year!

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April 4, 2012 at 12:20 pm

Wordless Wednesday 22 Feb 12

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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.

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February 22, 2012 at 3:31 pm

Wordless Wednesday 11 Jan 12

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The only cure for back-to-school anxiety...a Daddy cuddle.

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January 11, 2012 at 11:32 am

Wordless Wednesday 28 Dec 11

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They share a mutual love of fountains.

Happy Wordless Wednesday everyone!

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December 28, 2011 at 1:51 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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SPD Awareness

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Today is the last day of October, which means Halloween the last day of Sensory Awareness Month.  Hopefully you’ve been enjoying the month of posts by The SPD Blogger Network to celebrate.

I’m rounding off the month, with a brand new post listing everything I’m aware of, thanks to Sensory Processing Dysfunction, our constant companion in this household.

To celebrate SPD Awareness Month, here are a few things that I’m now aware of, thanks to my children and their sensory issues.

My entire education was a complete waste of time.  Because if the teachers taught me that there were only five senses, who knows what other lies they slipped in there?

A mess is to me is tactile heaven to my girl.  Sometimes the carpet just has to be a casualty of war in the battle of the senses.  And be assured- it is a battle- I have the scars to prove it.

The bed has a different bounce to the trampoline and the bouncy castle, and that is why the kids just won’t stop bouncing on it. Ever.

I speak an entirely different language these days.  Sometimes I’m fluent, but most of the time I’m gesturing wildly and gibbering nonsense.  Nobody seems to mind.

The reason I don’t like being hugged by strangers is not because “I’m English”, though voicing that together with an outstretched hand wards off the huggy bears.

Cereal is okay, and yoghurt is okay.  Cereal and yoghurt together is really, really NOT OKAY.

Being able to button up their clothes or tie their shoelaces does not make your kids better than mine.  But you bet I’m going to brag about it the day they can do it too!

Blowing your nose is not an instinctive action.  Playing with what comes out of the nose kind of is.

Because I don’t punish sensory-driven behavior, I’m often taken for a permissive parent.  Anyone who wants to try their hand at disciplining The Determinators is more than welcome.  Just give me a whimper when you’re done exhausting yourself, myah?

Those same ears that can’t detect me calling her name, are the very same ones tortured by any kind of mechanical device, even at very low volume.  On the same note, just because you’ve worked at tolerating the vacuum cleaner to the point where she can operate it herself, doesn’t mean you won’t be back at square one if you get a new one.  Living with dirt is easier.

I have parent friends, and I have SPD parent friends.  And they get completely different responses when they ask how we’re doing.

There are some days when you can spin, climb, and hang upside down all you want, and it will never be enough.  There are also days when slightly tipping to the side will be overwhelming.  There is no way to detect which of these days it is going to be until your living it.  Finding the balance is as tough for us as it is our kids.  I prescribe chocolate and wine in large quantities until the world seems to right itself again.

Waiting is really, really, really hard.  Even for Especially for parents.

I celebrate the milestones like every other mother.  But I have different ones, like “first time she smelled something” or “walked around her baby brother instead of straight over him.”

My children don’t know what an object is until they’ve put it in their mouths.  Even if they do know what it is, they’d better keep mouthing it to make sure it doesn’t change.  Or in the hope that it will change.  Either way, they are going to reject any product that was actually intended for oral motor purposes.

The kids will beg and plead to go to the park, and then for you to push them on the swings for upwards of 30 minutes.  When you finally buy an indoor swing, they will only want to use it if the other sibling has expressed an interest.  At this point I hand them each a pillow and consider it part of the sensory diet.

I spend so much time living and breathing SPD, and seeing it in everyone and everything.  On the odd occasion I encounter a kid without quirks, I’m a little freaked out, and want to prod them with a large stick to see if they’re actually breathing.

Expensive make-up makes far prettier wall murals than washable paint.

There are people on this planet who don’t have a special interest.  They’re actually kind of boring, our way is better.

Fine motor delays are somehow miraculously overcome in the presence of child-proof medicines.  For that matter, there are no motor-planning issues involved when a certain someone moves a chair to a different room to climb up to out-of-reach cupboards.  With locks.  I’m on first name terms with the Poison Control ladies.

The more I crave sleep, the less she needs.

That raindrop running down the window really is the most magical and absorbing thing in the world, and well worth staring at for a considerable amount of time.  Shame my kid only notices it when I’m running late.

Finally, I’m aware that while You Can’t Always Get What You Want, With A Little Help From My Friends- We Can Work It Out.  I’d have more up-to-date music references, but only Pudding-sanctioned music is tolerated in our house.

Written by Spectrummy Mummy

October 31, 2011 at 1:54 pm