Spectrummy Mummy

Asperger's, Allergies, and Adventures Abroad

Posts Tagged ‘occupational therapy

Sensory to Supernatural

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About a month ago, I went to see Cubby’s teacher for his report.  Now, Cubby is 4 and only in preschool, and I’m not really sure we should be doing reports, but this is the way of the school, so we do.  Actually, it is a good time to catch up with the teacher and address any concerns.  Cubby gets speech and OT during school hours, and the therapists send me weekly reports, and on the whole he is doing well.

On the whole he is doing well at school too.  He has a couple of areas of brilliance, and a couple of areas of all-too-familiar struggles.  For the most part, there was nothing new.  This teacher likes Cubby and handles his eccentricities and active imagination very well.  Only one thing she said actually surprised me: he wasn’t participating in music class.

Cubby loves music.  He is musical.  Even in his sleep he makes harmonic noises.  He loves to sing, and he can identify all the popular songs that come on the radio.  When I told him my friend had written the music for one of the songs we heard on the radio, he became convinced that all music was made by our family and friends.  He doesn’t always let me sing, but he certainly enjoys to do so himself.  My dad plays guitar in a band, and Cubby tells me he will be a rock star too.  He struts and dances like a Jagger-Mercury hybrid, so it wouldn’t surprise me.

But telling me he won’t participate in music class?  That surprises me.  Cubby being quiet?  Surprises me even more.

I wondered if he just didn’t like the choice of rhymes.  If the teacher played Maroon 5, Fun or (eek) Bon Jovi, she’d surely see another side to him.

Or would she?

Cubby was singing at the dinner table some South African song I wasn’t familiar with, and I guessed he’d heard it at school.  I asked him why he didn’t sing in music class, and his response shouldn’t have come as a surprise to a seasoned spectrummy mummy.  He loves hearing himself sing, but the other kids sing “different.”  I guess some of his classmates-like me- sing different notes (okay, off-key), and he just can’t stand it.  He told me he really didn’t like music class, and didn’t want to go any more.

We had a little chat about how problems have solutions, and if something is hard for him, he can always tell us so we can look for ways to make it better.

I suggested he wear his blue head ‘cones’ to protect his ears, and he was so enthused with this idea that he was wearing them the next morning before even setting off for school.  I emailed the OT for her suggestions (that would be another round of Therapeutic Listening) and pulled them from his head to tuck in his backpack.

And then came the next problem: without the protection he could hear ghosts, vampires and zombies.  But problems have solutions, I just need to shift the battle from sensory to supernatural.

 

Written by Spectrummy Mummy

September 6, 2013 at 1:54 pm

Independence Days

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Pudding is a child who was born knowing her own mind, and just waiting for her body to cooperate with its orders.  She has some real struggles with her motor coordination, but I know one thing about her- if she can do something, she will do it.  She was born independent.

Sometimes I have to persuade her that she needs help.  I have to wait patiently as she struggles until I’m allowed to assist.  If you’ve read anything I’ve written before, you know that patience is a work in progress for me.  Somehow we get by, and her fierce determination means she gets to be just as independent as she wants to be.

Cubby, on the other hand, has never been one for independence.  This kid loved being the baby, and was quite content to remain that way.  Whereas Pudding’s limitations are hurdles, Cubby’s are more like barriers.  He has always needed some persuasion to move forward.

But things are changing.  Earlier this year he decided he was ready for toilet-training, and that was that.  He is starting to dress himself, and get better about feeding himself. As all the skills he has been learning in occupational therapy start to come together, he is finding he actually has a use for them.

And then Pudding- always one to go it alone- has become more clingy.  She began refusing to go upstairs or downstairs without me.  Then asking me to go with her to the bathroom.  Other times she doesn’t need me at all.

Sunday was Mother’s Day in South Africa, but Cubby let me know that tough guys don’t do cuddles.  Later that morning it became evident that tough guys do still scream and pound on the bathroom door if their mummy needs a shower.

Both kids seem to be in an ongoing battle, and I suppose that is this thing we called childhood, mixed with a dash of disability.  And I’m in this ongoing battle between holding back and offering support.  I suppose that would be motherhood, mixed with a dash of disability.  Somehow we muddle through together.

Last night I tucked Cubby into bed in his new flannel sheets (we’re moving into winter here).  They were so soft and cuddly, he told me he didn’t need me any more!

And so, as we muddle through these Independence Days, I find I’m not needed in the same way, or as much as I’m used to.  I need to adjust too.  But on those days when I still need to be needed, I just sit at the computer and try to write a blog post.  

It works every time!

Written by Spectrummy Mummy

May 14, 2013 at 5:10 pm

Pinteresting

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I think I joined Pinterest when it first started, then immediately decided that I didn’t have time for it.  Last week, I was drawn back in, though I can’t say I wasn’t warned about what would happen:

@spectrummymummy you have now completed the “time suck” trifecta (fb, twitter and Pinterest)

Yay, time suck trifecta!  Well, I’m still not working yet, so at least it is only my time I’m wasting.  

Like Facebook and Twitter, I restrict my time on there to when I’m not needed.  Usually for me that is when I’m waiting for the kids to go to sleep in the evening- the prefect time to get pinning.  If you are interested, you can find me here: http://pinterest.com/spectrummymummy/

Just another piece of the internets that I’ve sprayed on, like a tom cat.  Sorry.  

Still, it isn’t all a complete waste of time.  I found this pin that I adapted into a game for my kids.  And they played. Like, together.  Taking turns and everything.  It was living the dream.  The only reason I didn’t disturb them to take photos was because I knew that would turn into a nightmare.  

Mosey over to the original poster:  Juggling With Kids to see how she created this game using a car to “park” in the spaces labeled with the sight words he is learning for school.

Image

We made our parking lot (which in my case looked more like a ouija board) using just the alphabet, and then we played a variety of games, like phonics (which letter makes the “vuh” sound?), spelling, (how do you spell cat?), and sequencing (what comes before “T”?).

The alphabet is very familiar to both kids, but they don’t always apply their knowledge so well.  This game also had them practice their listening skills, and taking turns.  Pudding used a doll to go and jump on the letters, while Cubby parked his ice cream van.

We got to work on the -an and -at words that Pudding is learning in her speech therapy, and Cubby got to practice his articulation that he works on in his speech therapy.  I think the big factor in our success was each child having their own toy to play with- a great way of bringing special interests into learning.  It definitely helped my two impulsive children to focus on letting each other take a turn.

It could, of course, be adapted for any child, and a variety of skill levels.  Just off the top of my head, I’m thinking of a toy rocket that could fly to the planets, or a plane that flew to different countries.  You could use colors or stickers to create your board, or maybe even use some PECS images if you are using that method with your child.  And how about using a straw to blow a ping-pong or cotton wool ball on to the letter to get in a little oral-motor therapy?

You could do a much better version, I’m sure.  Now that I know my kids like playing, I might make a more interesting version one of these days.  This one I deliberately kept as simple as possible, as I didn’t want to waste time.  After all, I do enough of that on Pinterest!

Wordless Wednesday 22 Jun 11

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Cubby’s last ever session with his Early Intervention OT.

He has come such a long way.

Happy Wordless Wednesday everyone!

Written by Spectrummy Mummy

June 22, 2011 at 6:42 am

Space Invaders

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Space Invaders style

Image via Wikipedia

Cubby has been making strides in his occupational therapy sessions.  What’s more, he is getting better at dealing with people outside his familiar surroundings.  Better than I am at helping him to deal with people, at least.  He is that exasperating mix of being touch-aversive and an adorable toddler.  People are in his thrall, and he loves to flirt….until that flirting becomes physical.  I don’t know why strangers are so compelled to touch children.   I suppose it is like the way I can’t resist a puppy, though if I’m warned the dog might bite, I’d think twice about stroking him.

When he begins to get distressed, he initially gets squirmy, trying to back way.  Yet these supposedly neurotypical masters of body language don’t pick up on this.  So I’ve become more direct.  I’ve tried to tell people that he doesn’t like to be touched.  It doesn’t work.    I’m incredulous that it doesn’t work.  If, as an adult, I asked not to be touched, I’m fairly certain that would be respected.  But it is almost like a challenge.  They are provoked by seeing that he is fine being touched by me.  I must be an overprotective mother who refuses to let others come near her precious cherub.  They think, maybe he doesn’t like others touching him, but I’m sure he’d be fine with me.  They continue, getting into his personal space, stroking his cheek, or rubbing his hair, right until he starts screaming.  And even then, instead of shamefully admitting defeat, they ask me what is wrong with him! 

He doesn’t like strangers to touch him.  What is wrong with YOU?

The whole thing reminds me of the old video game, Space Invaders.  It doesn’t matter what lasers he shoots, The Aliens are advancing, ever closer.  My defensive bunkers aren’t offering adequate protection.  When they touch him, it will be Game Over.

So now that he has a few weeks of Early Intervention OT under his belt, he is comfortable with giving a high-five.  It works like my very British arm-stretched-out-for-a-handshake manoeuvre, that also keeps huggers at bay.  Just enough contact to make all parties happy.

Almost everyone.  Pudding really struggles with this.  She is one of the Invaders.  This is her Space too, and she is driven to touch everything around her.  Long before her diagnosis, our ‘Wheels on the Bus song’ featured mummies saying, “Don’t touch that.”  Those same strangers who find me over-protective with Cubby, must also wonder why I’m allowing my preschooler to handle everything, and everyone, she sees.  Her body awareness is so poor that half the time she isn’t even aware she is touching, or leaning, or making contact.  The other half of the time, it is just a compulsion.  I’ve watched her run to something in the distance, so attractive to the eye that she has.to.touch.it.  Touching things just makes her feel better.  In a new place, the first thing she asks to do is to touch the ceiling.  We think it is her way of feeling the physical boundaries, when her senses are so unreliable and overwhelmed.  I’m terrified of going to houses that aren’t Pudding-proofed.  There is no way I can keep her from touching (and probably breaking) interesting but delicate artifacts.  Just like there is no way she can stop touching her brother.

Together, somehow, they have come up with their own thing.    Yesterday I heard the two of them giggling, something that generally indicates trouble.  I went down to the basement to find that she had covered him in stickers.  There must have been at least 30 stickers on him.  Cubby, like many toddlers, likes stickers, but he doesn’t like the sensation on his fingers.  He was thrilled to have the end product on his clothes, without having to touch them.  She was just as happy.  I let them carry on until the stickers were all gone.  I’d never thought of this solution, but it was perfect.

Bonus points, and the high score goes to my two players.  Hopefully the next level comes with defensive bunkers that are in tact, and a whole new set of powerful lasers.

Written by Spectrummy Mummy

December 28, 2010 at 7:26 am

My Beady Eyes

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Things have been going well with Pudding.   She has come so far.  I was in a bubble of contentment about her progress.  The OT handed me her evaluation to review during the session, and I felt it go pop.

She is at the very bottom percentile for fine motor skills.  In one month’s time she will be 4 years old, and she has the grasping skills of a 13 month old baby.  Ouch.  It hurt.  It really hurt.  I’d been rejoicing about her developing fine motor skills.  I was comparing her to how she was a year ago, and with all the concentration and effort she’d put in she had made progress.  Huge progress, worth celebrating.  I hadn’t thought about how she’d compare with other kids.  I’d forgotten all about how typically developing kids just keep on typically developing.  It’s what they do.  And while they keep on typically developing, the gulf between those kids and Pudding gets bigger and bigger.  That little voice that I try not to pay attention was whispering, it doesn’t matter how hard she tries, she’ll never catch up.

I had my own private pity party right there in the occupational therapist’s office.  Cubby attended, but he didn’t really get involved.  There was a juice box and snacks, and that was all he was interested in.  I gave myself a few minutes, ate a chocolate bar, and then let it go.  Really, I let it go.  I can hardly believe it myself.  This isn’t last year, I can take a disappointment without hope dissolving away.  This is going to keep happening.  Every once in a while, I’m going to be reminded that the world doesn’t see Pudding through my eyes.  That when you compare her with others, she doesn’t do so well.  It is okay, really.  Because I look at her through my eyes, and I see a girl who works so hard, and masters tasks in spite of the challenges I can’t even begin to comprehend.  She beats the odds stacked against her.  I see qualities that can’t be measured on a scale.  Qualities that are rare and exquisite.  That is what I love about my girl, she is unique.  It isn’t fair on the other kids for me to compare her to them.

I thought back to that day when she threaded the beads, and I ruined them, and she threaded them again without losing her composure.  I have to keep my composure.  I need to just keep threading the beads because it needs to be done.  Just keep stringing, just keep stringing.  I can be distracted by how quickly other people make their jewelry, or I can just enjoy the beauty of my own.  I’m going to keep threading each bead with patience and love.  There is a serenity there.  Instead of looking around, I’m going to carry on concentrating on my unique treasure.

I’m just sorry that not everyone gets to see it through my eyes.

Written by Spectrummy Mummy

November 3, 2010 at 8:41 pm

Life’s a blur

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Yes, I deliberately chose this photo

I made Pudding a dress this weekend. Yes, truly I am a domestic goddess. She of course wanted to wear it the instant it was finished, and I of course had to take a photograph of her in it. This is one of the hundreds, thousands even of photos I’ve taken of her that usually get instantly scrapped. Because unless you’re prepared for it, and have a tripod, and a decent flash, it is almost impossible to get a picture of her without the blur. She is in perpetual motion, almost never still. Our bundle of kinetic energy.

It has often been said that people with Asperger’s are emotionless automatons. It may be true that some individuals find it harder to express their feelings, the way they feel is not easily visible in their facial expressions. Then there are others on the spectrum, such as Pudding, who simply cannot contain how they feel. When she is happy or excited, she is champagne froth fizzing everywhere, and just as intoxicating. She bounces, she flaps, she runs around. You can see it. Of course, when she is angry or scared, you can see that too, much as you might not want to.  She feels everything with every one of her senses.

Then there are times when she just can’t be still. I call those mealtimes. She is in and out of her chair, under the table, onto the couch, galloping around and around. There are days when I question her calorific intake. She can’t possibly take in more than she expends. And yet, she continues to grow. Even when the food is something she really enjoys, and she tries to sit down for it, she can’t do it. She will fall out of the chair, at least once a day. Have you ever fallen out of a chair? Not while leaning back, but when all four feet are on the ground? It is almost impossible to do. Mealtimes are like watching a slapstick comedy. This is not deliberate though, and it stopped being funny a long time ago. This is a faulty proprioceptive sense. It is just one of the many (way more than five, whoever taught me that!) senses that are a little off in our girl.

Proprioception is how the nervous system maps out where the body is in space, and controls the use of limbs. For most of us fortunate souls, this works so automatically that we don’t know it is at work. I don’t have to look down at my fingers to know they are on the keyboard (I just have to look down because I can’t touch-type). I know I’m sitting on a chair because I can feel it. Pudding’s brain doesn’t get the feedback from her body that it needs, which leads to both fine and gross motor skills problems. It is one of the reasons why we need to see an occupational therapist. If you can’t figure out what your fingers are doing, you’ll find it impossible to hold a pen correctly, and then you’ll struggle to learn how to write. On a side note: what is the occupation of a 3 year-old? Playing. Yes, it is weird that play requires therapy, but after a while on our world, the weird makes sense. It is the normal that we question these days.

Pudding craves this sense in a way that is impossible for me to understand. I’ve read several books on sensory processing dysfunction, and talked to her occupational therapists, but I just might never get it. I imagine it as the feeling that an astronaut in space for a considerable amount of time might get just missing gravity. We know that deep pressure feels good to her. She likes sitting in her bean bag chair, and hates the smoothness of our dining table chairs.

Yesterday I finally got around to ordering a special seat pad, which provides tactile feedback that just might help her stay in the chair throughout an entire meal…

…And long enough for me to take a better picture, of course.