Spectrummy Mummy

Asperger's, Allergies, and Adventures Abroad

Posts Tagged ‘words

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

Words

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"I've got pinktails in my hair"

I have always loved words.  From an early age I developed a voracious appetite for reading.  I love Scrabble, and crosswords, playing around with words.  I love a good pun.  So it shouldn’t come as a surprise that Pudding likes words too, as difficult as they are to come to her at times.  As with everything though, she puts her own atypical spin on things.  I love her humorous, absurd uses of language.  I can’t wait to see who she is going to be, this exceptional child.  As a word-lover, I delight in all these language differences.  As a spectrummy mummy my job is to correct, normalize the dysfunction.

Here are some of Pudding’s words.  Sometimes they leave me lost for words.

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Written by Spectrummy Mummy

July 26, 2010 at 8:40 am

Thinking about the unthinkable

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Today I read on the always amazing A Diary of a Mom blog about yet another tragic murder of two children with autism by their mother. Jess writes perfectly about the horror of this act, the grief we feel, and how unthinkable it is.
And yet, I feel myself thinking about it a lot. If I haven’t made this clear in my previous posts, let me say right now how lucky I am. Lucky that we have hope for the future, lucky that we have more good days than bad days, lucky that even on those bad days, I have amazing support from Spectrummy Daddy, and our family and friends.
I’ve written before about the cost of having a child on the autism spectrum, but there are other costs too. The challenges can bring conflict to a marriage, the stress can damage a caregiver’s health, careers are put to an end, with the sense of fulfillment they often bring. I’m very fortunate so far, but I’ve seen all of this.
Long before I was a spectrummy mummy, I was a volunteer carer, along with my parents. I worked with adults (amazingly none of which were on the autism spectrum, or at least diagnosed as such) and my role was to give them a day out of their week to look forward to. We’d do whatever was enjoyable for the client- be that a day trip to the seaside, a restaurant for lunch, a game of bingo, or just sitting around chatting over tea. There was a lot of tea.
My undisclosed job, however, was to bring a much needed break to the individuals and families taking care the rest of the week.  Sometimes a spouse or a guardian would tell me that they just couldn’t wait a whole week. That they lived for that one day off, and I would get a sense of their desperation and hopelessness. It was a glimpse of the darker side of taking care of another individual all the time. It was no problem, I’d call up my support worker, and go from one day, to two, three, even five. Whatever was needed. My parents would offer up their home for a week or two, a real break, both for the individual and their family. Just to make sure the caregiver never got too close to the edge. So they could carry on with love, and doing what needed to be done. After all, it was cheaper than placing somebody in an institution, as far as the local government was concerned.
Even though this was a relatively small amount of my time, people would tell me they couldn’t do what we did. I would think even then, about how life doesn’t always offer you a choice. That your healthy spouse, parent, or child may not always be that way.
Though people don’t like to do so, it is acceptable to place an aging parent in a rest home. It is less so for a parent to do the same with their child. Yet the challenges can be very much the same, the supports just as limited. And those caregivers who needed a break, did they know how desperate they sounded? Would a break prevent a tragedy? Would support have prevented that mother from such a heinous act and saved the precious lives of those children?
Sometimes you don’t know how close you are to the edge.  Sometimes you don’t know you need help. This tragedy was unthinkable, but we really need to think about it. All of us.

Written by Spectrummy Mummy

July 23, 2010 at 9:14 am

Posted in autism

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