Spectrummy Mummy

Asperger's, Allergies, and Adventures Abroad

Archive for April 2011

Wordless Wednesday 20 Apr 11

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Downward Dog

 Today “My Fight” will be posted at The Thinking Person’s Guide to Autism.  Check it out here.

Written by Spectrummy Mummy

April 20, 2011 at 7:24 am

Sweet Reward (at Hopeful Parents)

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Hopeful Parents

This post was orginally published at  Hopeful Parents.

Pudding’s reward chart had been working wonders, but there were still some activities which required extra motivation on her part. At the end of the week, she had completed 3 out of her 5 goals. Had we overwhelmed her with too many chores?  Or was this her way of testing to see if she would get the prize anyway?  The reward chart is so new that it is impossible to tell, we’re still in beta testing mode.

We decided that she would have a reward, but not the toy she would have acquired had she carried out all of the tasks every day. Our local ice cream shop has a sorbet that is gluten, dairy, and egg-free that we pass off as ice cream to her.  We knew she’d be happy with that sweet treat, as long as it was pink and had sprinkles on it.  Ice cream always has to be pink with sprinkles.

As Cubby took his nap, I suggested she accompany her Daddy (who is in charge of religion and frozen desserts) to get ice cream. She refused. Perhaps I wasn’t clear that she would get some too, so I let her know that she would, as a reward for her tokens. She declined once again. I explained that it was pink, that there would be sprinkles. Still she declined.

Maybe it was because of her separation anxiety monster. After a long stretch without the beast, it has once again taken hold of our girl. It seems that just as it loosened its clutches on her brother to enable him to sleep through the night, the monster returned to attacking her. Now she can’t sleep without me by her side. She flinches if I reach for my coat or shoes, and requires constant reassurance that I’m not going anywhere without her.

I suggested that Daddy could stay home and she could go with me. She rejected this idea too. By now she was upset, frustrated that we couldn’t understand what she was trying to communicate. Could it be that she no longer liked ice cream? I found it hard to believe, so I checked with her. Yes! She likes ice cream and yes, she wanted to go for some! Okay. Spectrummy Daddy and I were at a loss. Finally she let us in on the source of her sorrow.

“Cubby wants to get ice cream.”

Oh.

Her brother.

She was thinking about her brother.

She was thinking about her brother!

My girl who has for so long lived in her own world, and refused to let her brother be a part of it, was upset that we weren’t including him on this treat. All the times I had tried, and failed, to get her to allow him to be part of her life.  Before he was rejected and ignored, now she wanted to share her enjoyment with him.  She was upset that he wasn’t included.  Here was my reward, and there is nothing sweeter.

We waited until he woke up, then the four of us went to get ice cream. We asked for two spoons for the strawberry sorbet, but it quickly became clear that she wasn’t prepared to let Cubby have any. A second serving was swiftly ordered for her brother, before the magic of the moment was lost.

Sharing each other’s world is enough to ask, they don’t need to share ice cream too.

Written by Spectrummy Mummy

April 19, 2011 at 7:06 am

The Reward Chart

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I promised an update on what happened with the reward chart, so here it is.  Hopefully this will help anyone else wanting to give this a try.

This was the chart I bought.  It comes with some ready made chores and various circle tokens.  There are also rectangle tokens for completion, and some blank ones to make your own chores too.  The first important thing was positioning.  Pudding would just play with (and lose) the magnets, so I put it up high where she couldn’t reach.  I took on board the suggestion of having a picture of the object she is working for, and found a picture of Abby and taped it up on the wall.  I’d managed to find a smaller and cheaper Abby doll than the one she initially fell for to use as her reward.  For the first trial, I didn’t want her to have to wait too long, so I gave just three chores, and only five days to earn them.  I only put things on there that I was certain she is capable of, so I opted for the following:

  • Get ready for bed (we’d still help with brushing teeth and bath, just taking off her clothes and putting on nightgown)
  • Get Dressed (I’d lay the outfit ready for her, no buttons or zips to contend with)
  • Say Please and Thank You (she is pretty polite, so thought this would be an easy one for her)

After the first day, I realized where I’d gone wrong.  The problem lies with the last one.  In many ways the reward chart is like a mini IEP with goals.  Those goals have to be measurable.  Getting dressed and undressed is pretty obvious.  Please and Thank You, however, get tricky.  Do I demand that she says them without prompting for every request?  Do I just require 50 % compliance.  There is another thing too.  She is a polite kid, especially when she very much desires the item.  So what happens if she asks for something I don’t want to give her (say, a cookie before dinner) and she asks very politely?  And she asks over, and over again (say, every night).  Still politely, but kind of a ceaseless polite whine, even when I’ve said no.  I don’t need to encourage that.

Given that we were just trying to make this as easy and fruitful as possible in the beginning, I just awarded the token for any saying Please and Thank You at least once in any given day.

The other two goals were much simpler.  She gets dressed fine at the weekends when she is going somewhere she wants, but it has become a chore to get her to do it in the morning before school.  Likewise, getting ready for bed signals the end of the day, and that comes with battles when she doesn’t want that to happen.  The reward chart works great here.  I still have to nag remind her that she needs to do it for a token, but the token does appear motivating enough on most days to get her to do it.  Success.

Every single day she asked me for the Abby sticker (the picture I taped to the wall).  Perhaps because our previously unsuccessful attempts at reward charts had involved stickers, she thought that was going to be the prize.  I gave it to her, of course, when she completed her goals, but the smile on her face when she finally got the Abby doll was worth it.  You can see that she is clutching the picture in the other hand.

Ultimately, the first trial was successful.  The chart directly led to increased independence with getting dressed, and also cut out battles over what she would wear that day.  It introduced the concept of waiting for a reward, and having to work for it.  I learned what works and what doesn’t, and shifted the responsibility for some self-care over to her.  For a girl in an ABA based classroom, it was nice to see that she is capable of delayed gratification of rewards.  After several more trials, I’m hoping to introduce a kind of pyramid reward scheme, where she can choose to cash in her tokens for a smaller reward, or save them to get something bigger.  Deferred gratification is a tall order for an impulsive kid like Pudding, but an essential lesson nonetheless.

The second attempt, that was more interesting.  I’ll tell you about that next time.

Written by Spectrummy Mummy

April 18, 2011 at 6:58 am

Memories

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Pudding has an awesome memory.  We’ve never had it tested, but every once in a while she’ll say something that tales my breath away.  She has been able to recite entire books from the age of two.  She remembers what dress she wore on her 2nd birthday.  She remembers almost everything that everyone has ever said to her, indeed this appears to be the way she learns language.  I have dark fantasies about abusing this gift by taking her to Vegas for some card-counting, but have managed not to exploit it yet, even though the chips are down (ha ha).

I don’t intend to imply that Pudding has any savant skills.  She is no Rain Man, and is way cuter than Dustin Hoffman or Tom Cruise anyway.  I suspect rather that her memory skills have been sharpened because when the world gives you unpredictable and unreliable information, you have to use what you can to make sense of it all.  Her memory muscles simply work harder than ours do.  As she continues to develop, I’m hopeful that she will be able to use these skills effectively, and they’ll enable her to navigate the social world a little easier.  For now though, that memory can prove equal parts useful and problematic.

Take Wednesday.  Pudding has a half-day at school.  Every other week she has an OT session, but this was our week off.  Pudding was reluctant to go to school.  She is going through a phase of separation anxiety, and wanted to stay with me.  I promised her we’d do something later that she would enjoy.  Immediately she requested that we go to the mall.  Not a problem.  I promised, and she happily left on the bus.

I still had some chores to do, so decided to get them done in the morning so we’d have plenty of time to fulfill my promise.  At the store, Cubby went through his usual routine of taking off his shoes.  Rather than putting them back on for him to remove again, I placed them on the handy shelf below the shopping trolley/cart.  To distract him and keep his hands busy, I bought a warm soy milk from the “Mermaid Cafe”, which Cubby proudly told me was coffee.  We carried on shopping without incident, his shoes still riding below.  Even though I noticed as I put him back in his car seat, in the 20 seconds I took to return the trolley, I forgot them, and subsequently drove home without them.  Obviously, I do not have Pudding’s mad memory skills.

There was no time to go back before I had to get Pudding from the school bus, so I called to ask them to keep them for me until I could collect them.  Cubby wears custom-made orthopedic inserts due to problems with his legs turning in, so there was no question wearing different shoes- we only have the one pair.  By this time, Cubby was screaming tired, so I put him down for a nap.  I decided to be proactive and make dinner in the slow cooker.  I opted for Maple Dijon Chicken, but erm, forgot the Dijon.  Yes.  I swear I had a decent memory until I developed pregnesia carrying Pudding. I turned it up high, and added some rice.

Pudding’s greeting to me as I met the bus was, “I want to go to the mall now.”

Right.  The little glimmer of hope that she’d forgotten about that fizzled out.  I explained that we couldn’t go to the mall as I’d lost Cubby’s shoes, and we needed to collect them.  Cue unhappy Pudding.

When Cubby woke up, I bundled them both into the car, and we collected the shoes.  All the while, Pudding demanding we go to the mall.  To appease them both, I suggested that we went to the book store nearby.  Pudding ran to the Abby dolls again, Cubby went right for the trains.  Around 45 minutes later, I realized in my haste to leave, I’d forgotten to turn down the heat of the slow cooker.  I told the kids we had to leave again.  Evidently, this was a cue for the kids to pitch why I should buy them their favourite items.  Pudding was in no way appeased by my assertion that she had her own Abby doll at home.  She wanted that one.

Likewise Cubby didn’t care that he has a bunch of brand new trains at home from his birthday.  He needed Salty, an obscure diesel dockyard engine.  He doesn’t even watch the Thomas the Tank Engine show, but has a catalogue of engines that he studies.  Oh yes, I’m not even going to open that can of spectrummy worms right now!  He screamed that he wanted Salty, as I put him in a fireman’s lift on one shoulder, my backpack on the other, and shepherded a whining Pudding out of the store.

On the way to the car, Pudding remembers that she still wants to go to the mall, and begins her plaintive petition to go there.  Meanwhile, a still screaming Cubby recognizes the mermaid logo, and changes his yells for Salty to “I WANT COFFEE!  MUMMY, I NEED COFFFFFEEEE.”  Pudding decided to join in, only she wanted her coffee at the mall, as four year-old do.  My off-kilter sense of humour kind of relished the looks from everyone in the car park, as I looked exactly like the kind of flustered woman who does, in fact, pump double espressos into her high as kites young children.  Wonderful timing there, kids!

I drove home to find that the only useful thing I’d achieved all day- cooking dinner- looked and tasted exactly like vomit.  I served it up anyway, and amazingly the kids ate it.  I wonder how long it will take them to forget this particular act of motherly malevolence.

Try getting this image out of your mind!

Another day in our life.  Memories are made of these.  At least mine is goldfish short these days!

Written by Spectrummy Mummy

April 15, 2011 at 7:44 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

Wordless Wednesday 13 Apr 11

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Keeping it blue.

Written by Spectrummy Mummy

April 13, 2011 at 6:42 am

Tangled

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Before Abby Cadabby, Ernie, around the time of Bashful, but after Upsy-Daisy, there was Sleeping Beauty and all the Disney Princesses.  She still likes Disney Princesses to this day.  So do we.  Having a 4 year-old girl in the house means we have an excuse to indulge ourselves by watching Disney movies.  We have been waiting to add another title to the collection of Pudding approved movies, though popcorn lends an appeal to certain non-Disney choices.

We didn’t get to see Tangled at the cinema, as there was no sensory showing for it, but it looked good from all the clips I saw.  I resolved to buy it when it came out.

I’d read another FS blogger’s post about her daughter being inspired by Tangled to draw a Rapunzel mural on her bedroom wall.  What struck me the most is a comment she made later about Rapunzel dealing with her isolation with art.  The Small Bits family are posted to a Mexican border town, a place that is dangerous and isolating.  I hadn’t thought until that point about what Pudding’s artwork is telling us.  She is in her own way isolated.  Her drawings focus on human faces, particularly the eyes.

I loved it.  Pudding seemed to enjoy it too.  She still cantered away when the popcorn ran out, but every once in a while she would return to check it out.  When I sat down to watch Tangled, I was thinking about it in these terms, and watching it through a lens of Foreign Service isolation.

But not for long.

Rapunzel strokes her hair when she is nervous.  She goes barefoot the entire time.  She yearns to be with other people, but is scared of them.  She is (said to be) clumsy and naive.  There is a whole montage of her swinging, rolling around, and generally sensory-seeking.  Even though she has lived in a tower her entire life, she is not at all afraid of being in water.  She has special talents too.

I’m not saying that Rapunzel is on the spectrum (though if Arthur can do it, I don’t see why Disney can’t go that little bit further).  I’m saying that I viewed Tangled through a spectrummy eye.  Even though I was predisposed to interpret it differently.

It is more than seeing my child in a different way, it is seeing life through an entirely different lens.  The world is altered with my spectrummy eyes.

So if it looks this different to me now, how does Pudding look at the world?  I still don’t know.  But I can tell you that she asked for a Rapunzel doll as her next reward.  Maybe she is starting to see herself through these eyes.

Written by Spectrummy Mummy

April 12, 2011 at 7:42 am