Spectrummy Mummy

Asperger's, Allergies, and Adventures Abroad

Archive for October 2011

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

Home

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Pudding has settled in incredibly well to our new surroundings.  We live in a very small community with just 4 other houses, and now everybody knows her and Cubby.  Of course, it doesn’t take long to get to know someone when they ring your doorbell, and march into your home uninvited when you answer the door.  If ever I forget that Pudding has no concept of boundaries, I’ll just wait for one of the neighbours to let me know.  It won’t take long.

When the Consul General and his family first arrived here, their residence wasn’t ready, and they had the pleasure of being our neighbours for a few weeks, which meant an intimate acquaintance with our daughter.  She liked to call on them, do a tour of their house, check on the cats, then leave.  Living with Pudding, I forget how strange her behaviour must seem.  This tall preschooler who invites herself into your home, but refuses to speak or look at you.  Fortunately, they took it in their stride, and even told me how charming they found her, which is very diplomatic of them.

Another colleague of my husband and his family live directly across from us.  They’ve probably experienced the most visits.  Pudding has taken it upon herself to invest in the welfare of their pet rabbits.  They even have the grace to extend an invitation to let her feed her furry friends, which is nice, but unnecessary.  Pudding would gatecrash anyway.

Another house has a family who are based at the Embassy in Pretoria, they too have experienced a Pudding tour.  I thought about apologizing to them for the impromptu visits, but one day I was typing away at a blog post and I turned around to find their 3 year-old standing behind me.  I’d say we’re pretty even.

And so the remaining house.  Until this week it had been unoccupied, but the couple who live there returned home.  I met with the husband and we had a brief chat about our little community, and England as we’re both expats.  I awkwardly mentioned about Pudding’s habit, and again, he was kind enough to say it wasn’t a problem.  We’ll see if he continues to say that for the next three years.

Add to this cast of characters the housekeepers, nannies and guards who appear to be enchanted by the troublesome twosome.  They accept her endless quirks without question.  She is free to be herself, which is usually an atypically social and giddy girl.  After a school day of targeted therapies, Pudding is ready to let loose, and I let her.

If you were to ask me, I’d say that exploring her environment is a necessary step for Pudding to feel comfortable in her new environment.  A comfortable Pudding is a child who is ready to learn, develop, and show us what she is made of.  I wonder how this move might have gone had we lived in a less welcoming (and forgiving) community.

So my girl is currently free range, and I don’t think she has ever been happier.  Because we happen to live in this incredibly supportive community, I’ve allowed her all the freedom she desires.  One day there will be boundaries to learn.  One day there will be appropriate social conduct lessons.  But for now, there is freedom, and a strong feeling of home- even if not all those homes are our own.

Written by Spectrummy Mummy

October 27, 2011 at 12:43 pm

Wordless Wednesday 26 Oct 11

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If he likes this so much, toilet training should be easy...

Written by Spectrummy Mummy

October 26, 2011 at 8:45 am

E is for Employment

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Yes, not echolalia- I just wrote about that, and I’d hate to repeat myself.  Employment has been on my mind lately.  Now that the children are in school in the mornings, I have free time for the first time in four years.  I’m weighing up the possibility of returning to work.  Putting aside for a moment every other consideration of being a special needs parent, getting a job is not an easy business.  Unlike other countries, there is no bilateral agreement between the US and South Africa in terms of work permits for family members of the diplomatic community.  So I can’t go to work on the local economy.  If I want to work, it has  to be at the Consulate or the Embassy in Pretoria, which is a commute I’d rather not face.  And then-z my husband cannot be my boss, or my supervisor’s boss, which means I can’t do the work  I did before getting married.  It doesn’t leave me with many options, so the issue is moot for the time being.

Once in a while, my mind wanders away from the safe territory of here and now, into the hostile land of the unforeseeable future.  I have a momentary panic about my kids’ careers.  Will they be employed?  What will they do?  It isn’t necessarily a bleak forecast.  I wouldn’t want to be the one to tell Pudding or Cubby they couldn’t do whatever they’ve set their mind to.  But what would that be?

Cubby, who has literally argued that night is day, would probably make an awesome lawyer, if we parents could stand the shame.  But if you were to ask him?  Right now he’d want to be a basketball player.  Such a shame he wasn’t the exceptionally tall child in our family.

Speaking of Pudding, perhaps with her inherent fashion sense, she could put that height to use in the fashion industry.  That girl is too hands-on though, and together with her arty streak, she’d probably be happier creating her own designs.  Whatever field she happened to choose though, I’m certain she’d dominate.

I know really, that it is ridiculous to speculate so far ahead.  Only a fool would assume that the tastes of preschoolers would never change.

Take me, for instance.  Four year-old me wanted nothing more than to be an air hostess.*  A job I would never have chosen once I reached adulthood.  But as a child I imagined a future traveling around the world, nagging people to fasten their seatbelts, serving nut-free snacks all day, dishing up meals in special trays so the food doesn’t touch, and dealing with a whole lot of turbulence while wearing a sunny smile.  Absolutely nothing like the way my life has turned out!

*Yeah, I know, steward or cabin crew, but little me was as stubborn as Pudding, so don’t argue.

Written by Spectrummy Mummy

October 24, 2011 at 5:18 pm

The Babysitter

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We had received an invitation to dinner at the Consul General’s house, the kind of offer you don’t refuse.* Somehow, we had to find a babysitter. Easy, right? People do that all the time. They go out in the evening, and somebody takes care of the kids and everybody is happy. Well, not with us. It turns out we’ve only used a babysitter once, and that was for a couple of hours in Paris, and Pudding stayed awake the entire time. Usually we emotionally blackmail our friends, but even then we’re talking once every 2-3 months. Between one thing or another, it has been 4 or 5 months since the hubby and I went out.

Spectrummy Daddy found somebody who was game- the adult step-daughter of one of a colleague. They came over the night before to meet the kids. Pudding was cantering in her famous concentric circles around the room. Cubby was hiding behind me making Princess Diana eyes at the ladies.

The Babysitter had facial piercings and tattoos. Of course, Pudding was curious. Upon closer inspection she found that one of the tattoos was of candy and cupcakes. I asked Pudding to stop stroking, then rubbing, then scraping it off, but The Babysitter said it was fine. I’m just glad she didn’t try to lick it. Pudding interacted in her uniquely Pudding way, and the ice was broken. Cubby ventured out too, and Spectrummy Daddy and I breathed a sigh of relief.

We explained how we’d put them to bed before we left, and do our best to make sure they were asleep. If there was the slightest problem, one of us would return. She would arrive early the next evening to get further acquainted before we left.

Pudding was much more reticent when The Babysitter arrived on Friday. I let her draw pictures alone, knowing that she just needed her own time. The Babysitter, Cubby and I played with his trains upstairs. He enjoyed showing off to his new admirer. Pudding came upstairs too to use her swing. I explained how the swinging helps to regulate her. As I’m talking about sensory processing dysfunction, I realize how alien this all must seem. The weighted vest and blanket. The indoor swing. The echolalia. I panic about leaving them, but there is no time for panic.

Spectrummy Daddy returns from work, and we quickly make pizza then I go to get ready. I get them ready for bed, and of course, they’re bouncing off the walls. They’re still awake, but quiet when we slip out and hope for the best.

The dinner is great, and after a while I forget that I’m anxiously waiting for a phone call to tell me to get home. I don’t remember when I last spent so long in exclusively adult company. Too long, clearly. It was a tonic. After an hour or so, Spectrummy Daddy mentioned that there had been no phone calls. I was tempted to stab him with a fork for tempting fate, but I was trying to behave in polite company. Still, no phone call, and eventually it was time to leave.

When we return home, all is quiet. As it happened, they had come downstairs pretty much the moment we left, but armed with pizza and Toy Story, they’d been perfectly content without us, and eventually returned to bed to sleep, after extracting more stories. As I begin to apologize, she stops me with, “No, they were fine, we had a great time!”

But the very best thing about that night? The Babysitter asked us if we’d like her to come again. Yes. Yes, we would. And I’m not waiting 4 or 5 months to do so!

*I like to annoy my husband by misquoting The Godfather, because I’ve never seen it and that irks him no end.

Written by Spectrummy Mummy

October 21, 2011 at 11:46 am

Stories By Heart

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Click here to read the post at Hopeful Parents.

Hopeful Parents

When she was two, before we realized Pudding had any problems communicating, she would recite entire books.  She had her favorites, and would ask for them night after night.  I have Corduroy, Where The Wild Things Are, Madeline, and a few others etched into my memory too.  Sometimes I still recite them when she gets overwhelmed, the words are calming to both of us- a shelter from the outside world.

In those days, Pudding couldn’t answer a yes or no question.  She was unable to make a choice- repeating the last offering, even if it was clearly not the thing she wanted.  Back then, echolalia was mysterious and scary.  It seemed like a real barrier to her language development.  I was disheartened by scripting, and longed for those precious snippets of spontaneous conversation.

Since then, I’ve learned to embrace echolalia as the way Pudding learns language.  It isn’t an easy way for her, but this is what she has.  Working with her is the only way that feels right.  Her language skills continue to improve; not in the giant leaps we’d prefer, but in its own way, like just about everything about her.  We’ll take it, gladly.

Though we’ve added some new books here and there, Pudding still sometimes enjoys to read those old favourites from time to time.  Because she knows them by heart, sometimes she’ll read them out loud to herself.  Yesterday choseCorduroy.  A clear favourite from her first birthday, when “De Cordugee” was her nightly request.  Her very first special interest.  She read, using the same intonations as me.  The story is so soothingly familiar, I was lulled into a kind of trance.

I snapped out of it, when she suddenly turned to me and said,

“Mummy, Lisa wants to buy Corduroy from the store.  She needs money.”

It occurred to me that in all this time we’ve read, and re-read, and recited that book, she didn’t understand it until now.  I knew she was only reciting, but for some reason I never thought about explaining the story to her.  I’m not even sure she would have wanted me to.  When I would ask her questions about her stories, she would refuse to answer, and get mad that I’d deviated from the script.  She always seemed content to look at the pictures, and listen to the collection of words that always stayed the same.  No doubt a pleasant haven from the tortuous conversations with real people that most be bewildering and overwhelming to those with auditory processing difficulties.

Not so long ago, she would just keep asking and asking for something that we’d run out of, not understanding that I couldn’t make it appear at will.   Now she is letting me know that “we have to get some from the store,” and while there, “we have to pay for it.”  Echolalia?  Perhaps.  But she is learning and using these phrases appropriately.   She is applying them to her old favourite stories that she can now appreciate on a whole new level.  I see that she is understanding more and more about this complicated and mysterious world.

Books might always be her refuge, but now she can appreciate them in a different way.  She can even deviate from the script once in a while.  Maybe this is the start of a new chapter in Pudding’s story.

Written by Spectrummy Mummy

October 19, 2011 at 3:42 pm

Posted in Hopeful Parents

Wordless Wednesday 19 Oct 11

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Only a pinkalicious messy tactile activity would keep her (mostly) occupied during the flat pack fiasco.

Written by Spectrummy Mummy

October 19, 2011 at 11:46 am

Flat Pack

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A marriage has to deal with many challenges.  Couples who live an expat life away from their support systems have larger difficulties to face.  And special needs parents?  I’m sure you’ve read the scary statistics by now.  These things, however, pale into comparison with the largest threat to my marriage: flat pack furniture.  All the problems converge in one messy Sunday afternoon.  And the worst of it is, it is usually my fault.  Just don’t tell the husband that.

I hate flat pack furniture.  Yet somehow, wherever in the world we live, I’ll suddenly find a need for, say, a desk.  The next thing I know, we’re flat packing.  In an ideal world, of course, we’d be buying expensive hand-crafted well-made furniture.  But here we are, lining the pockets of Swedish stockholders.  Somehow, I forget what a threat this stuff is, and I go ahead and purchase it.  If I thought about it, I’d recognize that the computer/TV/clothes can go on the floor, and that would be a whole lot easier.

So, yes, my fault.  We needed something to put the TV on.  While our house is furnished by the US Government (thank you, Uncle Sam) they didn’t provide something for the TV, and we didn’t bring one.  We found one we could afford, forgetting the fact that we pay the price in other ways.  After getting Cubby to take a nap, and providing a tactile activity to occupy Pudding, Spectrummy Daddy got to work…and there is our first problem.

Rambo with a drill.

You see, in our marriage, we don’t go it alone.  We share our problems or difficulties and find a way to work through them together.  But flat pack furniture comes into the house, and the husband goes all Rambo.  He makes it clear he is working alone.  Sigh.  I busy myself as I hear a fair amount of groaning and cursing.  At some point, he will go to get an electric drill, and this is when I transform into the unhelpful nagging wife.  There shouldn’t be any need for a drill, I think.  I’ll go and pester him to find out what is going on.

What the heck is this? And why is it left over?

I’ll find Rambo at the scene of a massacre.  There are dowels, screws, and those things that I don’t know the name of, but are the bane of my furniture fixing life.  Bits of wood everywhere.  At this point, Rambo has given up on the instructions.  He has given up on the suggested tools, and is looking for something like “wood nails” or “drill bits.”  Eek.  I decide he needs help.

Here is problem #2.  There is a decidedly male/female division as to the notion of helping.  For him, it would be bringing a cool beverage and keeping everyone (including me) far away.  Instead, I like to say things like, “This just doesn’t look right”  and, “You shouldn’t have done that.”  There will be more swearing.  I’ll go to the discarded instruction manual and try to make sense of it.  The problem is, I’m just not  a visual thinker.  In order to flog these things to as many gullible souls as the flat pack empire stretches, they use pictures instead of words.  Worse than that, they are 3D.  I don’t do dimensions.

Eventually, I’ll decide to just do whatever I’m told.  We’ll try to put a piece on, and it will jut out, or just not line up.  Rambo will kick at something, and I’ll be glad we don’t have a pet.  We’ll take the whole thing apart and start again.  One of us will question the decision to go through this again, and wonder whose fault it is this time.  I’ll keep quiet about the fact that it is my fault, even though we both know my silence speaks volumes.

Cubby wakes up from his nap.  Not content to just add his own whines and shrieks to the mix, he has to find the most annoying toy we own, and

caterpillar cacophany

bring it right there next to Rambo’s exploding head.  This time it was a game I call The Very Annoying Caterpillar.  I bought it because it game with tongs for practicing fine motor skills, but both kids just like to press the button to make the stupid thing dance to the most irritating carnival muzak, and place the little balls in every corner of every room in the house.  And outdoors too, for good measure.  If I attempt to turn the thing off, or take it away, he will add screaming to the cacophony.

I’ll go to make dinner, pretending not to notice the sigh of relief as I leave the room.  I must leave him with sound advice, however, because upon my return the construction is going much better.  Eventually the whole thing will be finished, and I’ll stifle the urge to ask about the leftover screws, preferring to let the worry of them fester in my too-full brain.  Rambo will leave, and a mild-mannered diplomat will take his place.  An unsupervised Pudding has made her way into the games cupboard, and emptied it off its contents.  Because it is all too fresh, I’ll think twice before voicing my desire to have a piece of furniture to store that stuff properly.

In the end, we have a new TV stand.  And a marriage still in tact.  Which is just as well, because I wouldn’t want any of this furniture in the divorce settlement.

Written by Spectrummy Mummy

October 18, 2011 at 2:28 pm

D is for Daddy

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On Friday I collected Cubby from preschool, and we went straight to the consulate to have lunch with Daddy.  Cubby loves going there, and without Pudding around, he was the centre of attention for once.  So I wasn’t surprised that he started crying when it came time for us to leave, but I was surprised that he was still yelling “I want Daddy” through his tears some 40 minutes later.  This is new.  It has always been about me around these parts, and Spectrummy Daddy has always had to play the understudy.  Always.

When Pudding was born, the midwives commented on the same things: her size, the volume of her cry, her insatiable appetite, and her unwavering devotion to her mama.  Far from being disengaged, Pudding would stare at me, and I would stare right back.  If she was awake, she wanted nobody else to touch her.  It was all me, all the time.  The doctor told me she would grow out of it. Well, the doctors back then were wrong about a few things.

As she grew older, it was still me.  I could right her wrongs, and if she was going to share her joys with anyone, it was me.  We thought that sooner or later she’d switch her affections to her father, but it just never happened.  Even when Cubby was born, she wanted only me.  The problem was, so did Cubby.  So we’ve had a couple of years of children whose sensory issues manifest in different ways, and the only one who could fix things was me.

I know how it hurts my husband to be rejected by the children he loves so much.  He wrote here about his efforts to come up with different ways to establish that bond with Pudding.  Now with Cubby, the two of them share a love of sport, so they enjoy watching games together, and I make sure that he goes to his football practice with Daddy.  But still, I was the one he cried for in the night, I was the one who could kiss it better, I was the one he wanted.

I wonder if this is a developmental phase.  I was also very attached to my mother until around this age, when I did an about-face and became a Daddy’s girl, wanting nothing to do with my poor Mum until my late teens when I discovered shopping.  Maybe, given time, this will happen with Pudding too.  Until then, I’m going to enjoy the fact that she’s my girl.  Now we have one of each, that has to be easier.  Both Spectrummy Daddy and I both know that it could be worse, she may have not bonded with either one of us.  Once again, thanking the autism gods for all that we have.

Still, this morning Cubby would only go to his daddy, and when he put him down again, Cubby immediately started crying for more hugs.  I had a small taste of that helpless feeling that my husband has known for so long.  Spectrummy Daddy asked him what he wanted, even though we both knew the answer.  After waiting so long, it was just good to know he was wanted.

 

This post is part of my A-Z series.  You can find the rest by clicking here.

Written by Spectrummy Mummy

October 17, 2011 at 10:51 am

amuse-bouche

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Our family finds it quite easy to see the funny side of life. It helps when Pudding and Cubby are frequently hilarious. My Facebook page features one of their gems almost every day, in fact, unless I manage to write them down, I forget half of the spectacular things they come out with . A little humour keeps us on an even keel, and encourages us to keep going on during tough times. But in our house, it has become even more than that.

The kids adore being silly, though strangely, Cubby hates to be called silly, and feels the need to assert that he is funny instead. They love it when we laugh, and once they find something that makes us giggle, they keep going with it. I’ve spent a lot of time with Pudding trying to get her to engage, so I love this role-reversal.  It develops both her communication and social skills, and all I have to do is enjoy it.

What often happens, is that one of the kids will do something that makes us giggle, then the other will try it, and then they up the ante to get funnier and funnier. It turns into a kind of competition for our amusement. On these days, I’m so grateful that they are siblings. They can spur each other on in a way that we as parents could never do, and all we have to do is sit back and laugh.

I’m not doing a great job of explaining their interactions, so here is an example from this weekend to illustrate my point.  Spectrummy Daddy had made a Tex-Mex feast for lunch.  The kids were eating tortillas, and they thought their bite marks made interesting shapes.

Pudding: That’s a moon!

Cubby: That’s not a moon, it’s a circle.

Pudding: It’s not a circle, it’s a ‘O’.

Cubby: It’s not a ‘O” it’s a ‘J’.

Pudding: It’s Hello Kitty.

Cubby: It’s a kangaroo.

And just when you think the bite-shaped tortilla can’t become any more surreal…

Pudding: It’s a petrol station!

Where do you go from there?  Well, if you’re Cubby, you take a small piece of the tortilla, place it on your knee, and say, “Mummy, I’ve got  a band-aid on my boo-boo.”

Who could help but not laugh?  This is a kind of family therapy, of the very best kind.

This post was written for S-O-S Best of the Best Edition 11.

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Written by Spectrummy Mummy

October 13, 2011 at 7:44 pm