Spectrummy Mummy

Asperger's, Allergies, and Adventures Abroad

Posts Tagged ‘words

Do you see what I see?

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“I think in pictures.  Words are like a second language to me.”

Thinking in Pictures, Copyright © 1995, 2006 Temple Grandin, Vintage Books.

Our appointment with the optometrist took place.  She didn’t complete all the tests, but we are now armed with the knowledge that Pudding has a slight astigmatism in both eyes.  However, she demonstrated that she could read letters at a distance and close up.  We’re going to need to get her to complete more of the testing to figure out exactly how able she is to see.  Believe me when I say that this is easier said than done.

So I watch her all the time.  I follow her gaze and I try to work out if something is interesting to her.  It is clear or distorted?  Is it making much difference to her vision, or barely any?  Not surprisingly, but frustratingly, I can’t tell.  We are speaking different languages, with no translator to help.  She is learning my language, but I still struggle with hers.  I’m verbose, my ability to visualize is limited by that.  I think in words.

Still, seeing the world through Pudding’s eyes is always a breathtaking experience.  Yesterday we were waiting for the school bus to arrive, and she gazed up into the branches of a tree directly overhead.  She seemed to be in a trance for a while.  I looked up, but saw nothing but the twigs and branches of the tree, and the pale morning sky behind it.  I asked her what she saw, and she responded that she saw a bird.

I couldn’t see a bird.

I moved around to change my position in case it was obscured from my sight, but even after walking around, I still couldn’t see anything but the branches of a tree.  Perhaps her vision is much worse than I thought.  I asked her where it was, and she lifted her arm up in an approximation of a point, there.  Nothing.  Then I watched as she raised her finger again, and traced the letters of her name in the branches.

She sees with more than her eyes.

Later that day we went out for a walk and I took my camera with me.  I played around with the exposure until I got this image.  I really wanted to capture how things might look to her, with her eyes that take in too much light, and ever-so-slightly distort reality.  I may not see how she sees, but I think I found a bird and her name in there.

You just have to really want to see it.

Written by Spectrummy Mummy

February 17, 2011 at 7:20 am

Interpreting

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While in Orlando, we went out for dinner with our Best Man, Chandler*, and his wife, Joanie*.  We were able to leave Cubby with my parents, so Pudding got our full attention.  She was, as usual, initially quiet (anxious) with unfamiliar people, but gradually became more at ease.  Pudding talked about the pictures she was drawing, and her new special interest: Ernie.  That evening she had a thing about whistling, something she can’t do, but is currently fascinated by other people doing.  She asked me to whistle, and  dutifully obliged, and stopped when she ordered no more whistles.  Then she told me she wanted Joanie to whistle.  I wasn’t going to let her off that easily, and told Pudding that she would have to ask herself.  She did, and Joanie also followed our little dictator’s orders.  We repeated this with Chandler too.

Joanie, quite reasonably, felt that the ice was then broken, and conversation could be made.  She asked Pudding a simple question, something she knew Pudding would be able to answer.  I can’t remember specifically what it was, but probably something about how old she was, having just celebrated her birthday a couple of days earlier.  Of course, Pudding ignored her.  I took over, as I frequently do, and asked Pudding directly how old she was, and Pudding answered.  I don’t know why, but she does this all the time.  It might be that she just isn’t paying enough attention to other people to catch their questions.  It might be that she is too nervous to give a response, and she feels more comfortable with a question coming from me.  I don’t know.  Even given plenty of time, she remains aloof.

What followed was a conversation of sorts, with Joanie asking questions, me repeating them, and then Pudding responding.  Parents do this interpreting thing naturally.  You might not know that when Cubby says raff-raff, he means giraffe, because you simply don’t spend as much time with him as I do.  We become masters at decoding what our kids are trying to say.  Perhaps even more so when our children present with communication difficulties.  We interpret because we have to.  Sometimes we are the only ones who can decipher what they want to say, and form a bridge between the parties present.

Lately though, I’ve been feeling increasingly uncomfortable in my role as Pudding’s interpreter.  During that dinner, I wished I could have just sat back, and let the exchange happen without me, however stilted or one-sided that may have been.  Clearly, Pudding still has significant difficulties with social communication.  She can be a chatterbox at times with myself and Spectrummy Daddy, but adding a new person to the mix simply overwhelms her.  I need to keep acting as that bridge until she no longer needs it.

After that meal, I thought hard about why I so dislike playing interpreter.  A friend of mine has been in a wheelchair all her life.  She is intelligent, articulate and social.  She can talk, she just can’t walk.  When we were younger and out together, some people would address me instead of her, even if she was the one buying something, or they wanted to know about her.  It drove us both crazy, and we’d get fired up in righteous indignation.  Just because someone has a physical disability, they are to be denied a voice.  My friend Rebecca* would take great delight in turning such assumptions around and establishing her independence.

And so to Pudding.  I dislike being her interpreter because I fear I’m increasing her dependence.  I’m a crutch that is disabling, rather than enabling natural and spontaneous interactions.  Am I facilitating a conversation, or am I reinforcing an inappropriate way of communicating?  No, I’m not speaking for her.  Yes, I’m trying to encourage her to become independent, but for some reason I feel that I’m doing the opposite.  She is still young.  I hope and expect she will continue to develop her social communication skills over time, with assistance from her teachers and therapists.  I expect I’ll grow in patience over time too, and if this is what she needs me to do, I’ll continue to do it for as long as I have to.  It appears to be another one of those duties that falls under my job description as Spectrummy Mummy (can you tell I used to work in HR?).  I know there are mothers who would long to have a child with Pudding’s communication skills.  I’m incredibly grateful that she is verbal.  It is my role in her communication with the rest of the world that I’m still trying to interpret.

*Names changed to protect the innocent.

Written by Spectrummy Mummy

December 16, 2010 at 6:52 am

The Name Game

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“What’s in a name? That which we call a rose
By any other name would smell as sweet.”

William Shakespeare, Romeo and Juliet (II, ii, 1-2)

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Written by Spectrummy Mummy

October 18, 2010 at 7:31 am

A Good Day

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On a good day, Cubby gets to wake up refreshed from his all-night slumber.  He isn’t pulled into consciousness by the clamour of his sister waking up.  On a good day he gets pulled into bed for cuddles with me and Daddy, who is not at work or getting ready for work.  On a good day, all his fingers are in tact, and not bleeding profusely.  Yesterday, then, was a good day.  I can’t remember the last time Cubby woke before Pudding.  If we needed the Early Intervention evaluation to take place on a good day, this was perfect.  My boy was at his very best.

His very best means that he will be very unhappy with strangers entering his home, but give him 20 minutes and he’ll be all smiles.  He’ll willingly perform the tasks required of him, but more importantly, keep trying at the ones he can’t do.  In that way you’ll get a very accurate assessment of what he can and can’t do.  I’d say that is pretty perfect for what you’d want from an evaluation.

As previously noted, Cubby is ahead with his language.  It is atypical though.  He labels things, including me.  His pattern of acquiring language is so startlingly similar to his sister’s that we feel we’re just watching the same process unravel.  There is one difference, however.  I sat in on most of  Pudding’s speech therapy sessions with her excellent therapists.  I acquired some of the tricks for getting kids to use their words, and he has the benefit of that.  His social communication is emerging.  He is not delayed or even atypical enough to warrant speech therapy services, but there are watchful eyes on him, and that soothes my mind.

The cognitive skills that were so problematic in the screening?  Not such a big deal today.  In fact, he is again ahead a few months developmentally.  On a good day, of course.

The services he will receive will be coming from an occupational therapist.  He does indeed have fine and gross motor skills delays.  He has low muscle tone, and some major problems with self-regulation, and some sensory issues.  They got to see that even on a good day.

I’m very, very pleased with the outcome.  I’m glad they got to see my boy at the peak of his potential.  I’m happy he is going to receive the services that he needs.  I was right to make the call.  But part of me is glad that on the day of his screening, he had a bad day, because I’m not sure we would have qualified based solely on today’s performance.  I’m astounded by the vast difference between a good day and a bad day.  I’m sorry to say that he has more bad days than good days.  Still, when we get the OT, and my boy gets what he needs, I know that we’ll start having more and more good days.  I can’t wait.

Written by Spectrummy Mummy

October 7, 2010 at 5:17 am

B is for bee

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Bee of Halictus genus, possible Halictus scabiosae

Image via Wikipedia

Here is a dilemma for you: when trying to teach new experiences, do you use the strengths to your advantage, or put in extra effort to mitigate the weaknesses?

I know you, smart reader, you’d say it would depend on what you were trying to teach.  See, I know you now.  Okay.  Pudding will be 4 in December.  At this age, she is not expected to be able to read.  The “average child” (does anybody know one?) is expected to know the alphabet, know that letters make sounds, and letters together make words. She can do all of that, albeit in her own way (I think one day Pudding will record a cover version of Sinatra’s “My Way“- that is how she lives).

Pudding has an advantage with some pre-reading skills, I believe due to her autism.  Some call these “splinter skills” but I hate that term as it doesn’t recognize them for the superpowers I know them to be.  Instead, I call them spectrummy skills.  She has an amazing memory, and she is a visual learner, finding it easy to see patterns.  As a result, without trying, she has learned a few words just by seeing them often.  Words like her name, “hot”, “up”, “stop”, you get the idea.  One method for learning how to read is by using “Dolch” words, also known as sight words.  The idea being that the child would memorize a set of the most frequently occurring words in the English language, enabling him or her to read by rote.

One of the sensory difficulties that Pudding has is dysfunction with auditory processing.  As far as we can tell, her brain doesn’t seem to filter out extraneous sounds, and all the background noise that I can filter out comes at her all at once.  Her defense against this assault is to tune out.  This is why I frequently fail to get her attention just by using my voice, and sometimes I have to touch her to make her listen.  When sounds do reach her ear, they seem to be garbled.  Her brain has to decode the strange sounds and turn them into words, which is why it takes her some time to respond, especially in a noisy environment.  That is why I implore you to give Pudding and others like her ample time to process your words.

Many children learn to read by associating sounds with letters, and groups of  letters, and putting them together.  C-a-t spells cat.  Here Pudding is at a distinct disadvantage.  So many of the sounds are so similar to her ear that a phonic approach is problematic.  This is how the majority of children learn to read in schools though.  A thorough understanding of phonics enables a child to read several words they’ve never encountered before, incrementally raising their vocabulary every time they read a new book.

So here is the thing.  Do I opt for the sight word approach which will come more naturally to her, or do I begin the phonics approach, because I know it will be more difficult, and require more practice?  Do I work with her strengths, or against her weaknesses?  I’m thinking of this, because the following is a conversation she and I had this morning:

Pudding: What letter does bed start with?

Me: You tell me, what letter does bed start with?

Pudding: “B” is for bed!

Me: That’s right.  Now, can you tell me what sound a “B” makes?

Pudding: buzz

Yeah, you got me there, kid.  You do it your way.

Written by Spectrummy Mummy

September 23, 2010 at 5:00 am

Spectrummy

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Spectrummy adj. 1. Having an autism spectrum disorder.  2. About, or related to the autism spectrum.

Usage:

1. Is your son developmentally delayed?  Nope, but I’m pretty sure he’s spectrummy.

2. Are you an Aspie?  No, I’m just a spectrummy mummy.

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Written by Spectrummy Mummy

September 10, 2010 at 12:25 pm

Me, Me, Me.

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The world revolves around Pudding.  I’m not just talking about her vestibular issues, (I will get to those one day, Courtney!) but in the way that she likes herself a lot, and everything is about her.  She has always enjoyed looking at herself in the mirror, in fact, her teacher bought a mirror for the classroom just for her.  She preens, and says: “Who’s adorable?  Pudding’s adorable.  Yes, I’m adorable.”  Should I draw the line when she starts kissing the mirror?  The girl has had three years of everybody in her family telling her how adorable she is, so it shouldn’t be a surprise that she says it too.  It is a fact, and I’m told that Aspies like facts and sharing them with other people.

In the last couple of months, some of her dolls that previously had their own names have started to be called Pudding (apart from male dolls: they’re Cubby).  Princesses are still princesses in books, but any other girl character has become Pudding too.  And of course, a dozen times a day I’m asked to draw a Pudding for her.  And pronouns being a real problem for her, she constantly refers to herself as Pudding.  So it isn’t really “Me, Me, Me”, more like, “Pudding, Pudding, Pudding.”

The word “autism” comes from the Greek “autos”, meaning self.  And here is the dictionary.com entry for autism:

–noun

1.

Psychiatry . a pervasive developmental disorder of children, characterized by impaired communication, excessive rigidity, and emotional detachment.
2.

a tendency to view life in terms of one’s own needs and desires.
It is the second one that is interesting to me here, is this what is going on?  I don’t know, it seems like something all little girls do.  I can’t tell any more.  My idea of typical is pretty skewed these days.  It seems like the kind of thing I might have done at her age, but I’m not exactly certain that I’m all that typical either!  Although, having read that definition of autism, I don’t think I have it.  I’m too busy focusing on what certain other people want and need.  But if you ever see this entry:
puddingism
-noun
1. a tendency to view life in term’s of Pudding’s needs and desires.
you will know for sure, that not only does she have it, but I do too!  Pudding, Pudding, Pudding.

Written by Spectrummy Mummy

September 9, 2010 at 8:23 am