6.29.2013

PECS'ing along

Sophie's word book

So we've started using picture communication with Sophie. It was a bit overwhelming at first but through trial and error I believe we are close to having a system that works for us. I'm writing how we went about it, in case someone is wondering.

We did have a tentative start prior which I described here. However in all honesty we didn't follow through as much as we should have even though Sophie seemed to get it even then. I felt guilty about it of course (what don't I feel guilty about?) and did take time to think about a system that would work better for us. However, what really pushed me over the hump was reading other people's stories, the memoir "Schuyler's Monster" first (about Polymicrogyria) and then finding this blog post with a very good video. Seeing that video and that cute little girl made me really think "you know what? Sophie can do this!" And then I really got started in earnest.

I decided that for us to be able to be consistent and really use the PECS we needed our own pictures of everything in Sophie's life that she does and likes. The little cartoon drawings were too abstract for Sophie i think. I started with food :) and activities she likes to do in and out of the home. Added "action words" such as walk, drive, sleep, eat. Because of the blog and cell phones I already had all the pictures of Sophie doing "stuff" I needed, and just had to assemble pictures of favourite foods. Of course realized after the fact that I missed many other words that we need so now have a running list of "words Sophie needs" that we add to. Another trip to the printer is in my near future.

Since I use the ipad for all my computing needs, I looked for an app that would create the cards (creative graphic artist I am not). This one was free and did the job in an easy and straightforward way that I could understand (yes, I am not too tech-savvy, so that's a high praise indeed). I was able to take pictures right from within the app or upload from library, add captions, and even record my voice (I didn't use this option since I was going to print). The program allows you to send the cards to email or to an air printer. For full disclosure, it did crash a couple times and the picture file was very large (be aware of this when printing and make necessary adjustments) but all in all I was very happy with it and plan to use it again. Oh and did I mention it was free?

Corners of our home transformed into visual representations of themselves

So the first time we sent the cards to be printed, I did not check the file like I just advised and the pictures turned out HUGE. Like, 6 by 6 inches each. And cost a fortune. I was quite mad at myself but by the time I arrived home with my giant stack of giant cards I had already fallen in love with them and figured out I will use them stuck to my walls in appropriate places. Then of course I ordered the size I had originally wanted for Sophie's binder. I think having the small cards in the binder which is portable and can go with us everywhere and the big cards actually stuck where the item is in the home (pantry, toy area, etc) really adds the consistency and level of visual support Sophie needs.

I did fumble around with the details at first. I want the picture communication to be as close to speech as possible and so originally had all the words in the binder at once (my reasoning was- if she talked she could use any of the words she wanted any time she wanted. Who am I to limit the words she can use?). However, after continually fending off requests for fruit snacks and cupcake I decided that it would be less frustrating for everyone involved if she only had access to words for items she could actually have. For the time being anyway.

She started off requesting the food items only, but then pulled off the "climb" pic so we set up her climbing ramp for her. She uses the "watch tv" one too. Since she's rocking the requesting stage I am looking of how to expand beyond that level. We do offer her choices too or use it show her where we are going (walk to park, drive to playgroup, etc).

We are beyond happy that we've found a way to communicate with her. It is hard to say, but I think she is happy too. When she walks to the kitchen now she looks for her binder as opposed to rummaging through the pantry as she used to do. My next goal is to supplement any PECS that we missed and make her binders for specific situations. I'm thinking of making a camping binder for our upcoming trip and a school binder for September. Those binders would have pictures relevant to those settings, obviously.

If anybody has any questions about picture communication or how we resolved any issues please feel free to ask in comments or on Facebook. I am by no means an expert but I would love to help if I can!

 

6.15.2013

Quick update

As you can see, the blog is undergoing some re-organization. In light of the current situation I felt that for clarity reasons it was important to update the content with Polymicrogyria information. Also, it gave me something to keep busy with to keep my mind off the unproductive ruminating.

Few things that we put in motion. First of all, we have referrals pending to the neurologist, geneticist and I believe the developmental ped that diagnosed Sophie with autism. Hopefully they will be able to provide some answers. The big question being- is she still autistic, or are her symptoms the result of the PMG. Of course who knows if we will get the "real" answer, as there is no medical test for autism and if they will go by outward symptoms she still meets the autistic criteria. She always did have the "things that make us go hmmm..." such as no real issues with change or transition (other than what you'd expect from a 3 year-old) and seemingly showing empathy, more so being distressed when others upset. Also, from what I read about PMG I did not come across a dual diagnosis with autism, but is it because it does not exist or because it is just harder to diagnose with the severity of other symptoms I do not know.

At this point we still identify with the autism diagnosis. It took us a year to wrap our minds around it, we can't just drop it like a hot potato until we are certain. So it is a transition time here, it feels like an in-between kind of time. We are presented with the MRI report without much of an explanation which points to one thing, but have been used to seeing Sophie as autistic all this time and it's like a veil that is gradually lifting. It would be prudent to remain somewhat tentative while waiting for the "official diagnosis" but it is rather hard to assume a clinically objective state when it is your child's health in question. The mind starts probing and latching to ideas.

One line of the MRI report jumped out at me as if it was highlighted. Among the medical jargon one phrase was clear and has been haunting me ever since I read it.

There is a thin septation seen in the right ventricle anteriorly which may relate to previous hemorrhage or infection.

Whoever is familiar with Sophie's history knows that she had a horrible regression which was preceded by a vomiting and diarrhea spell which lasted 2 weeks. As if I didn't feel guilty enough for not taking her to the doctor, this line was the final nail in the coffin. Hemorrhage or infection. Is that what she had, what caused her illness and regression? Regression is not commonly associated with PMG as it is considered "static" so something happened to her to cause the loss of skills. We will never know for sure, but I'm sure I will always wonder. While I am aware that if I brought a vomiting child to the ER the chances of an MRI being performed are slim to none, there's that "what-if"; what if we could spot whatever it was, stop it, avoid the regression.

But life goes on. I spoke with Sophie's speech therapist and we decided to start pursuing augmented communication in earnest. Since there is a chance she might never talk, I want to give her language in any form. I think without language she cannot develop higher-level thinking and properly express herself. We will start the process ASAP, and go with her level of interest of course.

I believe that brings everyone up to date at this point. I'm attaching a happy memory from the week, Sophie enjoying the bouncy castle at her sister's school fair. And her sister with doggy-face :)

 

6.08.2013

And I was just getting comfortable...

If you follow us on Facebook you know that something very unexpected came to light. Sophie's MRI which was considered a mere formality at this point, a crossing of the t's and a dotting of the i's so to speak, turned everything on its head.

Turns out Sophie's skull held a (big) secret. It is not the "same but different" brain the doctors were expecting to find, that they are accustomed to finding in the autistic cases. Sophie has a rare brain indeed, structurally different than most.

So far we only have the MRI report to guide us as we are waiting to meet with the geneticist. If any of you ever read an MRI report without a neurology degree you know what we face. The key words in the one and a half page of medical jargon seem to be bilateral perisylvian Polymicrogyria. There are lots of other words pertaining to ventricles and foci and trigones but they are softened with adjectives like "not abnormal", "minimally irregular" and "mild prominence". So other than the elephant in the room everything else appears more or less "ok".

So now what? Everything shifted on its axis just a bit, leaving us groping for answers yet again. Whereas autism as confounding and perplexing as it is, at least has a glossy "awareness campaign" behind it, this condition is vastly unknown. Even the formidable dr. Google was not at his usual over-achieving form. All he could supply were a few obscure medical journals, the above Wikipedia link oh, and the proverbial light at the end of the tunnel.

One blog. One! After sorting and sifting through literally hundreds of autism blogs, this pared-down selection was a drastic reminder that this is unchartered territory indeed. So in my overwhelmed "holy crap!" state I ransacked through the blog, ordered his book (yes, there is a book), emailed the author AND found him on Facebook. I'm sure there's a restraining order being written as we speak. I needed that though. I looked through pictures of his cuter-than-cute daughter (with a certain Sophie-like quality to her, I don't know...) and breathed a sigh of relief. She is ok, we will be ok.

I think for me it is not a drastic halt of our journey, just a detour. We've made our peace with Sophie's disability gradually over the past year. She might remain nonverbal and she is at a risk of developing seizures, but we made some peace with both those possibilities already too. She still has autism-like symptoms, just her brain anatomy provides a clearer picture as to the reason than in most autistic cases. I will continue documenting our journey. I hope that the friends we've made so far will stick with us, even as our paths might slightly diverge. Nothing like marching alone into the unknown.

Here's to our new journey...

She is still our Soapster. Unique, mysterious and totally awesome

 

6.05.2013

On fear

The one permanent emotion of the inferior man is fear - fear of the unknown, the complex, the inexplicable. What he wants above everything else is safety. ~Henry Louis Mencken
There are two kinds of fears: rational and irrational- or in simpler terms, fears that make sense and fears that don't.~ Lemony Snicket

As parents of autistic children we are no strangers to fear. It keeps us awake at night, and it unexpectedly grips us with cold fingers during the day. Naturally, some types of fear are warranted in our circumstances. But the trick is, as Lemony Snicket said to distinguish the ones that make sense from the ones that don't.

People have feared things which they didn't understand since humanity began. Be it the ancient man fearing the gods of thunder, the superstitions of the middle-ages or the perpetual suspicions regarding foreign cultures, fear was at the centre of many an irrational act. One could probably argue that human civilization is rooted in fear of the unknown and various consequences of that fear (wars, genocide, holocaust, etc).

Humans have also always been attracted to sensationalism. Nothing is more appealing than a grabbing headline, regardless of how accurate the details of the story below it actually are. Truthfully most of us only quickly scan the headlines anyway, busy as we all are. The problem with that however is- (and I studied journalism so trust me on this) it is significantly difficult to convey the essence of a story in about 5 to 8 words. Some might say impossible even. But papers (online or otherwise) want to be read, so the headline must be able to grab the reader, freeze them in their tracks literally. And nothing freezes better than fear.

Most of us can spot an autism article even when not looking for it. It's as if the word autism is a magnet, pulling our weary eyeballs toward yet another doomsday piece. Because what do we learn from the majority of these "informative articles"? Autism is scary. It might be caused by a multitude of factors (specifics change weekly) and is exacerbated by an even greater multitude of factors, including (but not limited to) diet, air quality, pollution level, maternal health, paternal age, parents' education level (the higher, the greater the risk) and of course by the lack of the ideal and custom designed INTERVENTION PLAN.

Autistic children wander, or more dramatically- elope (isn't that when you run off to Las Vegas to get married?). We all mourned and held our loved ones close at the news that 3 autistic children died these past few weeks as the result of drowning. However, according to the Centre for Disease Control and Prevention, 2 children die everyday in North America due to drowning, and actually the group highest at risk of drowning is men (80 percent of all cases!). Curiously, nobody is marketing locks and tracking devices to keep males safe and away from bodies of water.

As autistic children grow into adulthood, they become increasingly more violent, unmanageable, costly and generally a menace to society. The "young autistic male" is becoming the proverbial boogeyman, replacing the unfortunate "young African-American male" as the object of fear among the innocent population. Stories like this one fill every parent's heart with dread and prompt them to eye their offspring warily in an attempt to spot early signs of an inevitably sinister future.

I am by no means insinuating that our life is trivial or worry-free. It is not. I am just suggesting that we tread carefully in the midst of extensive media coverage of the current topic du jour. That we attempt to extract actual news from the fear-mongering smokescreen. And finally, that we remember that everything in life can be written as statistics, risk probabilities and worst-case scenarios. That bad things do happen to good people. But sometimes, good things happen too. And then there's a whole lot of perfectly mundane, not news-worthy things that happen in between.

Nothing in life is to be feared. It is only to be understood. Now is the time to understand more, so that we may fear less. ~Marie Curie

 

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