12.27.2013

Musings on time

I had some time to myself yesterday, my husband took the kids out to the mall then to visit his family. So I decided to tackle a project I've been saving for when I had a few hour chunk of time- organizing and preparing pictures of our little guy since his birth. We are really a photo-album type of family (I know. We are practically dinosaurs). So as I dug around memory sticks and computer files I had a chance to review our life, and Sophie's development over the past 17 months.

Pictures are good reminders of things you forget (stated Ms. Obvious). They're just there, snapshot of time. Whenever I look at pictures of Sophie I am struck by how unchanging she is. It's like our life happens around her as she is fixed in time. Essentially, on the outside she doesn't seem to have changed much at all in the past 2 years. She has grown, her body has gotten bigger and more stable, her face leaned out. But behaviourally she is still Soaps- watching Thomas, lounging on her chair. I often think of those photos where there is a subject in focus and the background is a swirl of lights and action indicating being lost in chaos (that's how I interpret them anyway). Or sci-fi shows in which a character is living at a different speed of time than everyone else (Star Trek Voyager had a great episode which had their ship get stuck in orbit of a planet with a different rate of time than the rest of the galaxy. While their ship was being repaired for 3 weeks, they witnessed the planet undergo thousands of years of civilization. My favourite episode). Sophie is kind of existing in a parallel universe at a slower rate of time.

It is never more apparent than when viewing her with the contrast of the seemingly accelerated development speed of her younger brother. First crop of pictures, he is a newborn. Then a chubbier newborn gazing around, waving fists. Then he is grasping, chewing on toys. Then he's sitting up, cruising, crawling, and so on. Now he is running after his older siblings and insisting on being included in their games. In comparison, Sophie is static next to him- sitting, watching, sucking fingers... Here she is 2, here 2.5, now 3.5... Same old Soaps.

Sophie through the past year. Happiness, love, timeless, eternal ,

When I was pregnant with her, my third (and we thought last, ha!) baby, I kept saying that I will cherish every moment of her babyhood. My older daughter was a lot like my youngest, always eager to grow up, reach the next level, be "big". I felt cheated out of her babyhood in a way, it felt as if I blinked and she was a big, capable girl all of a sudden. I thought maybe it was my fault, in my harried state I forgot to be mindful, in the moment, savouring those fleeting stages. And so when I found out another girl is on the way, I thought this was my chance to redeem myself. "I will cherish every week, I will record every milestone. I will be present for it all". And yes I did enjoy the first year and a half immensely. Sophie was the most beautiful, lovely-dispositioned baby on the planet. Like a gift from angels, almost otherworldly. I savoured every nursing, every diaper change, every cuddle with my life size doll-baby.

When she was slow to reach milestones I didn't worry. I thought it was part of the gift, an extended babyhood because that is what I wanted. Many mothers of several kids told me stories of how their youngest forever remained a "baby". And that is what I thought it would be- Sophie would develop slower, be a baby longer and what a lovely way to wrap up my mothering tenure!

The rest is history, it's been recorded in these pages as it happened. This post isn't about what would've been. It is about what it is- a little girl, existing in the present, living each day same as the one before and the one yet to come. A real life Peter Pan... minus the evil pirates.

We don't know what her future holds. She isn't completely static, she is inching along ever so slowly. She is learning PECS, playing her Thomas game on the ipad. But it seems her unique brain can't hold more than a few skills at a time and needs to drop one to make room for a new one. The most drastic example of this was of course when she stopped talking within a month of learning to walk- was it a coincidence? Perhaps not.

Be careful what you wish for you might just get it. A saying with a haunting truth to it. I said more than once I wanted my baby to remain a baby for longer. And I got a baby who might remain one indefinitely. Or maybe I got a spirit child who is here to teach me lessons of patience, love and simply being present and mindful. And always, the meaning of time. Slow and steady wins the race? She just might. Or maybe there isn't a race at all.

The future is something which everyone reaches at the rate of sixty minutes an hour, whatever he does, whoever he is.~ C.S. Lewis

There is more to life than simply increasing its speed.
~ Mahatma Gandhi

 

12.06.2013

Measuring intelligence

Today, we went to a second eligibility meeting for Sophie to receive IBI (intensive behaviour intervention, a one-on-one ABA funded by the province. The ONLY form of autism therapy funded by our province. Not that we're counting). In the first meeting last year Sophie didn't qualify because was deemed not ready (we didn't dispute that at all). So today. How to say this. Well.

First of all, we were mailed a questionnaire to fill out ahead of time. It consisted of all the typical questions. Does she blow kisses, wave bye bye, point to belly button. Now, as I was solidly filling out the "no" column of the paper, I wasn't feeling "oh poor me my autistic child is not anywhere close to where she should be". I was actually feeling quite fed up by the apparent missing of the entire point of this test- yes, she doesn't point to belly button, she doesn't wave bye bye, and she definitely doesn't blow kisses. She does not give a crap about those things, because unlike neurotypical children, she isn't motivated by social feedback. I think measuring autistic children against neurotypical benchmarks doesn't provide a clear or relevant reference point.

Example. During most of the appointment, Sophie was sitting and playing on the iPad. She now completes the Thomas puzzle almost totally independently, and is able to access the menu and scroll through the video options and select the one she wants completely by herself. She knows she can't touch the screen when the video is playing because it will stop. Her little brother can't do those things. But yet, gauging intelligence according to the test we filled out, he's ahead of her by leaps and bounds because he can blow to indicate something is hot, say hi, pretend to feed a doll, etc. Does this mean he is "smarter" than Sophie? We don't think so.

He is definitely way ahead in social intelligence. He is a social being, ready and willing to be integrated into society. She isn't. However, when you engage with her on her terms she shows a wisdom and awareness beyond that of her toddler brother, who seems to be so "ahead" of her.

Example 2. At some point in came up that Sophie is approaching phase 4 of PECS. The ladies were blown away because that completely shattered the image of Sophie they had formed in their minds. PECS is a "scientific" quantifiable skill- I guess they couldn't imagine her having any of those.

The psychologist did admit that Sophie doesn't present in the "typically autistic" way. While aloof and socially unmotivated, she seems quite calm and at ease in new surroundings and situations. It is hard to explain. I suspect it might be a combination of her personality, perhaps her brain malformation (Polymicrogyria), but I also think the DIR approach we naturally take with her contributes a lot as well. I don't know what "typically autistic" children act like. The ones at the centre where she receives her ABA seem more active and loud than Sophie but what does it mean exactly, I don't know. If we take "autistic" to mean focused inwardly and self-centred then she is. If we attribute a whole list of stereotyped behaviours and body language then she is ambivalent on some, except for the social/communication aspect which she fits to a T.

Their conclusion? While not official yet, their opinion is that IBI is probably not the "best fit" for Sophie. A more natural, child- led approach, like the one at her school is better suited to her needs. I cannot say we are surprised, or that we disagree. While we are a bit resentful of the fact that our government only funds a one-sized approach for all autistic children because it is "scientifically proven", that is not the fault of the (nice) ladies we spoke with today. I do wonder if our own attitudes and viewpoints affected the outcome. At one point while they were outlining "the method" I blurted out that "it's not my objective for Sophie to be compliant, I am not compliant myself". So there's that.

So if ABA isn't it, what would be my "dream therapy" for Sophie? A place which would see her as a person, a child, not just as an "autistic client". We see her as a child first, a 3 year old child at that. We would want her to learn like all 3 year olds learn- through silliness, through play, through gross motor activities, through circle time, through sensory play, through peer interactions. We would want someone to spend the extra time on the critical skills she needs help with- communication and social interactions. How is an autistic child to learn social functioning locked in a room with a therapist for 20 hours a week I cannot imagine. Lastly (but importantly) I would want someone who is working with her to see her as capable and not be surprised that she "can" do something as if they didn't expect that at all- that is NOT the attitude I want her around!

And so I think at this point her school fits all the above criteria and it is the RIGHT place for Sophie and removing her from there and putting her through IBI seems not only unnatural and wrong, but downright cruel.

She rocks, and we are not surprised

 

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