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

 

11.13.2013

This is autism (for us)

There is an uproar happening right now in the autism community. I seldom get involved in uproars, I'm more of a pacifist than a revolutionary. But, even this pacifist has limits. After reading the latest release from Autism Speaks, an organization which proclaims to represent autistic people's interests, I literally felt as if someone punched me in the gut. What is this I am reading? Thinly veiled anti-autism propaganda, feigning sympathy with the caregivers (never the autistics themselves) the piece broke up each fear-mongering paragraph with the sentence "this is autism".

Well- it isn't. You know that meme "if you met one person with autism, you met one person with autism"? Same can be said for each autism family. So I thought I'd write a bit about what autism is for Sophie and her family.

**************

Every morning we are greeted by a footsie pyjama-clad bed-head standing by our bed gently tugging at our pillow, urging us "up, up, up". We pull her in between us and relish in the warm preschooler cuddles until we are ready to get up (she could lie like this for a long time).

This is autism

She herds us toward the living room and looks at the tv expectantly. We oblige putting on Thomas the tank engine (we have long given up trying to switch it up). She plops into her zebra-print chair and we go on to get her and her siblings' breakfasts ready. Peanut butter and jelly sandwich eaten in front of the tv. We would love her company at the table and try to encourage it gently, but ultimately allow her to have her breakfast alone (or with Thomas). We will work on it gradually.

This is autism

After breakfast I dress her and wait for her bus to come pick her up. Unlike her siblings, she goes to a special school and gets picked up by the bus. Also unlike her siblings, she absolutely loves her school and runs out happily to meet the bus. Her school is a "different" school, but her unique needs are met there and she is thriving. While we might have been a bit sad she won't follow in her siblings footsteps we realized she is embarking on a path which is solely her own.

This is autism

Twice a week she goes to more therapy after school. She has had more doctor's appointments, hospital visits, EEG's, MRI's, blood work, specialist consultations and so on (and on) than all her 3 siblings combined. Her bravery and ability to roll with the punches and enjoy these visits leaves us amazed and swelled with pride every time.

This is autism

She is different from most kids. She doesn't play with toys in a usual way. She loves to sort through sensory bins and look at the world upside down. She looks through the window and at the trees for a long time with an absolutely serene expression. She teaches us to see the beauty in everyday sights and sensations- wind, trees, water, sky... and bubbles.

This is autism

She might not speak. But she will communicate. She is learning PECS (and rocking it!) and will be transferred to a digital device when ready. I believe she has the ability to learn to read and type and I will shift the earth trying to make that happen.

This is autism

Yes, we worry. We worry because she is at the risk for developing seizures. We worry whether she is treated well at school and anywhere else we are not with her. We worry if she will be able to connect with others, be fulfilled. We worry if we will be able to help her reach her potential. Mostly though, we worry that the damaging portrayal of autism in the media will cause people to turn away from her, judge her. Or worse yet- be afraid of her.

This is autism

She isn't missing. She isn't gravelly ill. She isn't a burden. She is one of four siblings, not more or less important, or more or less difficult than any of them. She is loving, cuddly, silly, active, stubborn and amazing. We will not break, our family won't fall apart and we will support her as long as she will need us to - because she is ours.

This is autism

Thoughtful, quiet, dreamy, kind, autism

 

 

10.23.2013

How I became an autism advocate

I've been at this for a while now and looking back I have grown so much this past year and a half (only? Seems like 3 lifetimes). I thought I'd outline where I was, where I am now and how I got here.
As some of you know most of the groundwork has been laid already in my childhood. I know what it's like not to fit in, to be "painfully shy" and different. So obviously I am not one to expect my children to skate through social nuances while I am still struggling myself in certain situations. So there's that.
Another experience which honed my skills would have had to be parenting my firstborn. While he isn't yet officially diagnosed with anything we can see he fits the criteria for an autism diagnosis. He was a highly verbal, socially awkward toddler and I spotted him as one of my own right away. He had the works- anxiety, sensory defensiveness, phobias (of everything), extreme picky eating and as a result of all those, meltdowns. But something told me- I can handle him, I don't need to call in the "experts" just yet. He was also sweet and smart and reasonable. So I worked with him, respectfully, gently, persistently. It's a pretty long a story of how I helped him, but the main part was- I looked at his strengths and focused on that. His "deficits", I saw those for what they were- extreme sensitivities.
Shipwreck cruise- makes for a happy boy
Of course I did have the unfair advantage. When in doubt, I'd ask myself "how would I have wanted to be treated in this situation?" This gave me a clue when to back off but also when to push a bit (because, sometimes we feel really anxious but at the same time we really do want to do something- at those times gentle encouragement and plenty of "you can do it!"'s can make a big difference). And now- he's a smart, goofy kid who does have friends (most of which he knows since he was a toddler), loves scouting life and is even doing really well at swimming lessons! (This is the kid which screamed bloody murder at hair washing till 5 years old). Of course he loves all the "Aspie things" too- Minecraft, fantasy/sci-fi, Lego. He is still very cautious, wary of the dark and one big phobia remained - the dentist. But overall, not bad at all.
So that was my warm-up. Of course while I used words like "sensitive", "shy", "anxious like me" I didn't piece together the whole Aspie thing then yet. Just knew that we both required gentle handling. And then, after a perfectly neurotypical, girly extroverted daughter (who was a big help to her brother in his early years), Sophie came along. She looked the most like me but was much more cheerful and serene than I ever was. We knew she was unique but we had no idea what we were in for!
You all know her story by now - the regression, the diagnosis, then the second diagnosis. But this is more about me. You see at first I went through all the stages of grief. At first shock (oh my god, what's happened to my baby?!), denial (once we remove gluten, give supplements, etc she will "bounce back"), anger (stupid world full of toxins and pollution poisons our innocent babies), bargaining (I should've known something was wrong, if only we took her to the ER when she was vomiting, why did the ped not request an MRI when saw her giant head, etc), depression (her life is over, she will remain diapered and institutionalized her whole life, what a sad lot she was given) and finally acceptance (you know what? She is different and that's ok, we will be ok).
And that's what I want to talk about. The jump between depression and acceptance. Because I saw many people get stuck there. It doesn't help that the media via "helpful autism articles" expects us all to be stuck there, because really, anyone would be and rightfully so.
I am an analyst. When faced with overwhelming emotions my instinct is to deconstruct them, break them down, find their root. So, as I was fighting tears and panic and heartbreak I decided to "name my enemy" instead of swinging blindly in the dark.
First thought that came to me- I am sad about the "would-be's". She would have been a cute little chatterbox, would have loved animals, would have played with her brother and sister, would have gone to the nursery school her sister attended, would have play dates with the little girls her age on our street... And I realized- it's not about Sophie. It's about me. All those "would have's" have meaning only because I attached meaning to them. Based on my interests and desires I have formed an image of a cherubic little toddler I would have expected Sophie to be- but it isn't Sophie. If I was a different sort of mom I'd be mourning the loss of a would-be ballerina or a would-be soccer player or a would-be artist. Sophie isn't mourning the loss of those dreams because they were never hers to begin with. As parents we fantasize about what our children will grow up to be. It seldom comes to pass as children pave their own reality (as they should). Yet, when their reality falls outside of what we consider desirable, we reject it, or fight it (it's not just about autism, in some families it could be going against the family profession, or marrying the wrong person, or being the wrong sexual orientation).
Now, I believe if a part of us is still mourning the loss of the child that's "buried under the autism" then that can lead down a destructive path. I've heard people yell at autism, swear at autism, banish autism out of their lives. That goes with the presumption that autism is sort of like a growth that is fused to the typical child's brain and that, with proper handling can be removed, leaving the perfectly intact brain exposed. I choose to see that autism is as much of Sophie's identity as her blue eyes, her infectious grin or her funky hair. You can't excise it from her and uncover a neurotypical Sophie which was hiding there all along. If I claim to love her, I can't make qualifying statements like "I love my child but I don't love her autism". It's like telling me "I love you but I don't like your introvertness" , or "I love you but not your green eyes". I have to think and say "I love you, all of you, exactly as you are".
Many of the therapies were designed to do just that- ideally uncover the hidden neurotypical inside the autistic, or failing that, suppress the obvious autistic behaviour and at least make for a subdued autistic which wouldn't offend "normal" people with his/her otherness. But call me silly, I want more for Sophie. Just like with my son, I don't want to focus on traits which are affecting me negatively. I want to focus mainly on what makes her happy and makes her Sophie. I talk to her and about her as if she understood every word. Because if she doesn't - no harm done. But if she does (and I do believe she does) I never want her to hear anything from her family that would make her feel unvalued or "less than". There's enough of that in this world unfortunately.
No room for nothin' but love
She has started her education and some ABA therapy. I do want her to learn and progress, because I know she is capable of it. I believe the right education is critical. By "right" I mean appropriate to her style of learning and temperament. Her teachers have observed for example that she prefers learning while standing. I confirmed that yes, she isn't much of a sitter- and that's ok. We are focusing on communication however, because if there is one thing I want to give her it is the ability to express herself. I don't care if she does it sitting, standing or hanging upside down (all are possible) she will speak her mind (Or write. Or use pictures. Or sign. You get the idea).
So in a nutshell- how did this introverted Aspie get past her own insecurities and become an advocate, a word she used to associate with banner-wavers and yellers-at-governments'-front steps and petition signers? By firmly and politely saying "yes, she can" to any doubters of Sophie's intelligence. Also saying "yes, she definitely can" if anyone questioned whether allowing her stims was appropriate. By taking her everywhere with us, wherever we would take our other kids. And by viewing "success" as "whatever makes her happy".
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10.07.2013

Much ado about everything

I think it is time for a little update on Soaps. I update Facebook frequently but Sophie has been a busy gal this past month and it'd be good to have it all recorded in one place.

First of all, school! Sophie started her preschool and is loving it. I don't think I can adequately convey my relief at this. Every morning (including weekends) she is anticipating her "buh" (bus). By her teachers' accounts she is happy, engaged, cooperative (reasonably) and tries things she never did at home. She has been playing more with toys, especially sensory-type toys. For a long time she didn't show any interest in holding anything in her hands (other than food) so that is progress. She joins her classmates at snack table and at circle time... In other words, pure amazingness.

Then, ABA group. For Facebook fans, I'm sure you remember my hand-wringing and belly-aching over ABA being scheduled at her nap time. Completely unnecessary. She is a bit drowsy after but LOVES her ABA (I thought it wasn't possible!). It is a PECS-focus group and baby girl loves her some PECS. This is what I posted on Facebook after her first day:

So I decided that I will never worry about Sophie again (I'm joking of course but anyway)

Today as you know was the dreaded "ABA at nap time" that I've been stressing about for the past week. My poor baby was going to not only be denied her afternoon siesta but forced to learn at the same time. I couldn't eat all morning.

So we got off the highway about 5 minutes away from the centre and she fell asleep. "Great" I thought. We got in, I carried both babies in, Sophie slumped over my shoulder. As we were walking to the room she woke up. The room-tiny! With four therapists and four kids including one poor fella who was screaming his little head off. Crowded chaos in other words. I think my face said it all. "I can't leave her in here!" So they gently suggested I put her down and see "how she does".

I put her down expecting I don't know what. Her running for the door maybe. She deliberately walked over to this screaming child, right in front of his therapist who was futilely trying to engage him, grabbed the huge PECS binder that was lying on the table (full of pics of junk food, but I digress) looked at the plethora of sweets apparently on the menu, picked off skittles and smarties and handed to his teacher completely unfazed!

I went to fill out some forms (what else?) and on my way out I peeked in again. She was "talking" with the therapist. We stayed in the neighbourhood so I also spied her playing at the centre's cool playground a bit later on.

She was fine! More than fine, she might actually learn something I gotta stop underestimating this kid...

Last Friday we had 2 ladies come for a home visit regarding evaluating Sophie for AAC technology. It is a rather complicated process but basically means that it is funded by the government if child is proven eligible. She was recommended by her speech therapist last spring when we found out she has Polymicrogyria. So they came, explained the program, oohhhed and aaahhhed over the visuals we have hanging all over our apartment, Sophie showed them she can open binder and request blueberries (she isn't one of those kids that go out of their way to disprove everything mom was just saying - thank goodness). It seems like a low-risk option, there are no contracts or exclusivity clauses - we are free to purchase any tools we see fit for her while under their program. However, going along with them will give Sophie access to a variety of devices to try, which we wouldn't be able to do on our own. They seemed experienced and kind, supported my interest in literacy, and I think we will be able to work well together. Best part, they will now integrate with her school and her ABA group and we will all meet together and brainstorm ideas for Sophie's first device.

On the medical front- we met with the geneticist and it was interesting. She is familiar with the team in Seattle specializing in Polymicrogyria research and the genetic disorders associated with it. She put us in touch and they mailed us a saliva collection kit for us (parents) and Sophie! So fun... They are looking to check if she has one of two specific disorders MPPH or MCAP. It doesn't really mean much, they are both so rare and there isn't a whole lot of information a diagnosis will reveal that we don't know already but yet, another puzzle piece in place.

We are going to see the neurologist this week and that should be interesting as well. Few things I'm hoping to speak about. Oh, and Sophie will have a lot of dental work done, poor thing. And I'm buried in forms. And still waiting on subsidy. And have that feeling I'm forgetting something important... always. And I have 3 other kids with their own appointments and forms and classes. And sometimes I like to sleep and eat and all that stuff. Sometimes. Man, I got tired and overwhelmed writing all that out.

Megalencephaly doesn't sound as cute as it looks

 

 

9.06.2013

It is not ok

I hardly ever complain about the system. I try to give everyone the benefit of the doubt. Everyone is just "doing their job". We are not any more important than anyone else, we will wait. It's ok.

But, after a year of waiting and being put on the back burner I am here to say no, it is not ok. Not ok at all.

It is not ok that Sophie was diagnosed with autism last August and had to wait over a year for services.

It is not ok that after waiting seven months for financial assistance for children with severe disabilities, assistance "everyone is entitled to", I received a phone call while driving and was told if I won't call her back the very next morning she "will close my file".

It is not ok that she had to wait nine months for an MRI.

It is not ok that when the said MRI disclosed completely unexpected results, her own paediatrician nearly silently handed us the report and left the room without explaining anything.

It is not ok that when I came home and googled and found how serious the condition is and called his office and asked to speak to him was told he will call me back. It's not ok he never did.

It's not ok that the follow up with the neurologist was scheduled for January.

It's not ok that I called and left messages to bump the appointment closer with 3 different secretaries and nobody called me back yet.

It's not ok that her referral to the geneticist is over a year old. It is not ok that when their office finally called me yesterday (from an unlisted number) and I missed it, they grumbled and pouted whether I even wanted the appointment at all.

It's not ok that I applied for the subsidy for her preschool last October. It's not ok that I had to call every month to check on the status of my application and was being told to call back in a month. It's really not ok that when I called today it was suggested that maybe I should write a "nice little note" about how my daughter has special needs even though it is clearly outlined on the form.

Upon receiving a diagnosis we are told there are "so many services available" but really there are not. What there are instead are walls. Walls in the shape of voice mail boxes which are never answered, walls in the shape of forms you spend hours filling out and which apparently get lost in the void, walls in the detached voice on the other side of the phone which in a polite way is really saying "you are not important. You are nothing more than a nuisance. You can try calling back but it won't help anything. But when your number does come up you better drop everything and run, because there are no second chances".

I want to focus on the positive. I don't want to be petty or entitled. Yes I know there are many people waiting for services, being swept under the rug. But I think everyone can agree with me that it is not ok.

 

8.24.2013

Questions, revisited

As I mentioned on Facebook recently, I've been running into people lately that I haven't seen in years. It is not surprising, it being summer and there are only so many family places where people take their small kids in the neighbourhood. Many of the people I met knew me back when I only had two kids (eons ago, it seems) and of course you can't get far past "oh my and who is this?!" before I start telling Sophie's whole life story yet again (many, many times it happened. To the point I was thinking "man I should just carry bio cards to give out").

Of course her story, which has woven itself into the tapestry of our life and become a part of our "normal" is fascinating to someone hearing it for the first time. The homebirth followed by a most unusual baby with hair evenly split in the middle into right side dark and the other white, the talking at 9 months (in two languages!), the fine-motor precision and ability to draw intricate symbols at 14 months, the serene demeanour, followed by the horrific illness and subsequent regression, the diagnosis of autism, then progress again, then the MRI which changed everything once again... Yes I guess it sounds like a made-for-tv movie to someone who isn't living it daily. As I watched people's mouths and eyes widen in surprise it injected a new sense of wonder into Sophie's condition. Which is good, I guess I was getting a bit burned out.

I spent a bit more time on the PMG awareness site, and revisited with some contacts. I added my name to their registry. I also started reading, researching again. What could have made her regress so drastically? And if in fact it was a hemorrhage, why would she have one? Research pointed to metabolic disorders (vaguely, after serious digging), and it made me remember certain things that nobody could answer when she was a baby. Here is a list for my own reference and on the off-chance someone has any ideas.

  • Big head
  • Low-muscle tone
  • Sweaty baby, and also an "odd" odour, a kind of sweet, fruity taste which unnerved me but nobody could specifically define it
  • Odd pigmentation
  • Digestive issues which went away after introduction of GF/CF diet (as did the sweat and odd smell)
  • Keratosis pilaris or "chicken skin"
  • Regression

She had blood work done at the time of her diagnosis and was tested for common metabolic disorders. I suspect that either what she has is very rare and not commonly tested for (or there is no test for it) or that she has some rare chromosomal mutation which might not even be known or tested. Now that we know that she has PMG I'm hoping that perhaps they could use that to cross-reference with the other symptoms. Of course "they" being specialists which we were referred to but still haven't heard from and who knows when we will.

Curiouser and curiouser. But we'll figure it out

I am currently reading this book. It is very interesting, and fitting with my current reflections.

 

8.20.2013

Back to school jitters

I think I made it clear by now that I am a summer person and as far as I'm concerned, winter should be abolished. Bring on the global warming already (I joke, of course... sorta).

I usually get antsy as the summer draws to a close. I love the months of August and September, the golden sunshine, the cooler evenings, the hue of green changing subtly to a yellower tone. But since I was a little kid the beauty of that season was always marred by one thing. Yup, back to school.

I hate the whole thing. The commercials, the flyers, the bins of binders and pencils lining the aisles of department stores. It all causes a sinking pit to form in my stomach. That is an example of a residual conditioned response as I haven't gone back to school in over ten years. Needless to say, I didn't like it much. I'm not sure why exactly, I was never bullied and I was a good student. I just think school-type settings are not ideal for a deeply introverted person like I am. And don't get me started on presentations, ugh.

Of course like a good responsible mother I hide my feelings from my kids and instead put on the "goodness gracious, you will have so much fun!" show. My daughter buys it, my son not so much. It's further supporting my extrovert/introvert theory as my daughter is a social butterfly and thrives in school while my son needs a lot more alone time and to do and learn things at his own speed (which is a slow and detail-oriented speed and with little desire for it to be a social affair).

This year the pit in stomach is all the more deeper because Sophie will start school as well. While I know (or hope?) that this will be a good thing for her, I want to keep her with me for just a little while longer. We have heard only wonderful things about the school (which is a special-needs preschool, offering many therapies in a half-day program), we have visited and met the staff and had a more formal interview. It seems like a great fit for her. The teachers were able to see Sophie using her PECS binder (only a couple days after I made it) which put her in a "capable" category in their minds and they seemed quite excited to work on our communication goals. Which is great. The OT seemed optimistic about potty training. Which is equally great. I think the structure and routine will be good for her as well.

But... I am a bit sad that at 3 years old she is already embarking on her formal education path. The earth mama in me feels she should spend her days digging in the dirt, running in the grass and just being a kid. And she does do plenty of that of course. I am very protective of her "kid time" and believe that most learning she's done is the result of all the normal experiences we try to provide. I worry about getting caught up in progress reports and learning plans and seeing her as a project to be improved upon. At the same time, I am excited about giving her the opportunity to realize her potential. I think the crux of my dilemma is that in the process of "improving" Sophie, I don't want to lose sight of her as the little girl in the midst of all this. A little girl who is only three years old and still has a lot of growing up to do. I often read parents writing that their autistic toddlers work so hard. That phrase somehow rubs me the wrong way. I don't feel comfortable with Sophie working so hard, not yet.

Sophie chillin'. Note how she propped up her feet for maximum comfort.

But on the other hand I am desperate to improve our communication with her. Poor girl is trying so hard to talk, to make sounds. I am almost ready to purchase an app for her to begin teaching her communicating that way. I will wait until I speak with the speech pathologist but I foresee doing it by the end of September at the latest. In the meantime I want to print off more word sheets for her and teach her as many words as possible. She is a funny girl that Sophie. Sometimes she is lost in her path, running in a seemingly oblivious to the world way. But lately she studies letters, in her books and on her Thomas engines with such fascination I swear she is trying to read. I always make a point to spell words for her because, heck you never know. And I've been putting subtitles on her videos too, for the same reason.

She's doing a lot of reading lately

And so that is me these days. Excited, anxious, a bit sad but overall optimistic :)

 

 

8.14.2013

Camping with Soaps

We have always been a camping family. Our first-born went on his first camping trip when he was 1, as he was born the summer before. All the other children went the very first summer after they were born, whatever age they were then. Sophie being a May baby, her first camping trip was at 5 weeks old. Camping with babies is what we know, it's what we do.

Some pics of camping through the years

So it never occurred to us that Sophie would prevent us from going camping, ever. She had gone for her second trip at just over one, while we were still in the blissfully ignorant, "all is well with all our kids" stage. She loved it then. Last year was the only camping-free summer with the birth of our little dude and Sophie's diagnosis. We were itching to go again.

Since this year we have two toddlers at approximately same level of development (albeit totally different temperaments), I did spend a bit more time wondering how it would go. Would we be able to enjoy any downtime at all or would we spend all of our time chasing babies around? But I decided to stop wondering and just do it and see. Here is what we learned:

  • Camping with babies is definitely not as relaxing as camping without babies, lol. But we knew that already. Not news.
  • It's best to work as a team and employ numerous people to keep eyes on babies to avoid caregiver burnout. We were camping with friends and had 4 older kids between us to alleviate some of the responsibility, for brief periods. This was particularly important for Felix, who at this time appears to be quite the extrovert and being included in big kid events just made his day. They were very good at including him, but really had very little choice as he insisted on following them around like a little baby duck.
  • Sometimes it is necessary to place babies in some sort of device to have hands (and eyeballs) free- we brought 3 different carriers and had a double stroller and bike trailer. Thankfully Sophie loves her vehicles and will happily sit in them for a long while, looking at her Thomas books. Little man, not so much (those typical babies can be quite a nuisance sometimes, ahem).
  • It is a good idea to modify some activities to suit everyone's needs and abilities. So when we went hiking, we either carried Sophie in a backpack carrier or pulled her in the bike trailer. We also brought the trailer to the beach because while she loves the water, we found she needed breaks from the brightness and noise of the waves. The bike trailer was a quiet little box which she retreated to happily on her own when needed. Then after a break, she'd come out again and resume playing.
  • She needed her own "stimming time". Sophie gets pent up energy out by running back and forth in a repetitive pattern. She picked the road for this purpose, I'm sure because she was attracted to its faded grey-coloured linear shape. She loves a good bold line. The road was lined by tall trees on each side which constrasted beautifully with the light blue sky. She ran in her ecstatic way across from one side to another. Since it was a road (seldom used, but a road nonetheless) we placed 2 campchairs there, creating the "Sophie guard" headquarters. The guard would rotate and our roadside sitting area hosted many coffee breaks and silly-children gatherings. It gave passerbys pause for thought too, which was somewhat amusing.
  • Bring a few favourite things. Sophie spent many quiet moments looking at her books and playing with her engines. We didn't bring any video viewing devices for her because Sophie seems to associate videos with home and we want to keep it that way. We also want all our kids to enjoy nature in its, well natural form.
  • Don't be afraid to take risks. One of our favourite places to visit at this campground is the Grotto, a cove carved in the Niagara escarpment over thousands of years by the cool waters of Georgian Bay. It is rocky, the water is frigid and you need to be quite sure-footed to navigate safely. But the white-rock beach is beautiful, the water a crisp torquoise and the views breathtaking. We almost didn't take Sophie there this year, but then said what the heck, let's try (can always go back, right?). We brought a heavy blanket for her to sit on and placed the sun-warmed smooth rocks on it for her to feel. But after a while she wanted to get up and explore! I held her hand and she walked on the rocks, waded in the icy water and even made a path on the smooth rocky bank. It is probably one of my favourite memories from the entire trip and almost didn't happen, because taking her there was not a "rational thing to do".

Other than the usual "small-kid hassles" (diapers, naps, constant supervision), camping with Sophie wasn't difficult and I'm sure if we didn't have our baby boy along we would say it was downright easy. The challenges didn't stem from Sophie or her special needs, rather from having two small kids requiring the same level of care at once. But such is our life at this time, regardless of where we are. I can honestly say we had a wonderful time, and did manage to find time to relax and swim and hike and enjoy many fireside conversations with lovely friends (after putting exhausted babies down for the night). And in 10 days I don't recall any significant meltdown or tantrum, other than the expected tears from bumps and scrapes or frustration at being redirected from a (usually dangerous) activity.

Here are some pictures.

Sophie at the beach
Quiet time with books
Can't resist a smiling at camera photo
Ready for a hike
Little troublemaker
The older kids at the Grotto

I might add some more pics as we keep downloading them from all our respective devices (something should be said about this day and age when one trip is documented on six or seven cameras).

 

7.15.2013

Construction cake and a year in review

Our little man, our little Felix turns one today. And what a year it's been...

A year ago right now I was nearing the end of a difficult birth, the details of which I won't outline here. Let's just leave it at "difficult". At the same time we learned that he would be the first baby born in the newly constructed wing of a local hospital, which was followed by a surprising and slightly overwhelming bit of media attention. Now it's kind of nice though, his 15 minutes of (small) fame.

A year ago today I was lying in the hospital bed looking at my new baby, bruised like Robert DeNiro on the cover of "Raging Bull" (difficult birth remember), but my thoughts were back at home and with Sophie. She was a frail little bird then. Her regression had just run its course and she was (as we all were) quite shaken up. She lost all her words and her passion for life too it seemed. She spent most of her time curled up on my lap, me holding her close. And now we were going to bring a new baby into her life. To say I was worried would be an understatement. At that point we didn't have an official diagnosis yet (that would come a month later) but we knew something was very wrong. All those thoughts swarmed in my brain as I cuddled my new bundle and stroked his bruised little cheeks.

If I could send a note to that self sitting in that hospital room a year ago it would read something like this:

Hey- It will be ok. More okay than you can imagine now. Sophie will not be the same Sophie you remember, but she will get her spark back. You will find that there are many things she enjoys and many more things she can learn. She will show you that she wants to communicate and is very capable. And Felix? He will be fine. You know what I mean. He will develop in leaps and bounds and add his own mischievous spirit to the family. And while it will be hard and there will be moments you will feel like you are failing everything and everyone, the storm will pass and the sun will come out once again. You are strong and you will learn more about yourself in this next year than you probably have in your entire life before. There will be even more to learn of course. But I promise you, at the end of the year you will find your groove, and even have fun! (Most of the time ;))

I wish i had that note then.

Ok, enough with the heavy and onto the cake portion! Felix's a "man's man" and already showing an interest in all things with wheels, bonus points for size. I found some images of construction cakes and went from there. Now, this isn't a food blog and anyway, it really isn't rocket science. Here are the basic instructions, I trust you can figure it out.

1. Bake cake (I used a gluten-free cake mix, 2 boxes, each baked in own pan).

2. Frost cake (I made chocolate buttercream frosting, sandwiched the 2 cakes and frosted all around. Oh, I evened out the sides a bit with a serrated knife and sliced off the corners before frosting)
3. Make "dirt" (crush Oreos with cleaver or in food processor)

4. Assemble! (Wash all your vehicles. Create a construction scene. Also, I used "cookies and cream" chocolate bars to make the brick wall. Cool eh? I made it up myself people)
5. Ideally, you should pipe a "happy birthday" or something along those lines. I didn't because didn't have a suitable writing implement. It was a close-friends only party, I hope they understand. But- you should :)
And that is it! A year older and wiser and ready for the year ahead.
Bring it!

 

7.13.2013

Summertime and the living is... Easy?

I wish I had something more profound to say, but the sun fried my brain I think. I read other bloggers who manage to convey heart wrenching anguish or uplifting accomplishment or riot-inducing rage but I got none of that. Not in July and probably won't in August either (August is my favourite month actually, bet you didn't know that). I'm kinda mellow these days.

I think I live for summer. I can't feel bad in the heat. I can't be sad when the smell of sunscreen is in the air. I can't be feeling sorry for myself when sitting on some blanket by a wading pool watching my kids running around with a herd of neighbourhood kids... Ok well scratch the sitting. Not doing much sitting this year what with Sophie and a freshly-walking toddler under my watch. Shadowing more like. Still, there are worse things than shadowing two insanely happy wet kids I'd say.

We are fortunate to live in a neighbourhood with many wonderful (free) attractions for kids. There are wading pools, sprinklers, big pool, creeks etc, etc. We never need to be bored. I think having 3 older kids as well (2 of my own, one under my watch) and plenty other friends who like to come along make every simple outing to a park a fun event.

And Sophie? Well we are biding our time for now. I was never one of the "must teach maximum skills in minimum time" kind of parent with my older two so I am totally letting Sophie be a kid this summer. We are working on communication as usual (oh- must share this link if you're looking at AAC like we are... Very good resource right here), but mostly we are working on summer-ization. Meaning, water, sand playground, picnics with a nap somewhere in the middle. I think she is learning as much as she would anywhere else. Just this morning she walked up the steps to our apartment using alternate feet! If anybody's kiddo had physical delays you know what a big deal that is. I was holding her hand, but still.

One of the best things about Sophie (well... There are many of course) is her relatively easy-going personality. If it sounds like parenting her isn't "all that hard" in that aspect, it is not. She is content the majority of the time, she is regular with meals and naps and she adapts to new situations quite easily. The things that do make parenting Sophie hard seem to fade in the summer. Her developmental delays, her differences from her peers, her detached personality, those are not so apparent or significant when she is just one of the kids in a swimsuit and a bucket hat (or no hat, who am I kidding) knee-deep in the pool. It would take a trained eye to notice that her entry into the pool is always from the same angle or that she isn't playing like the other children but rather walks in and out of the pool in a perfectly synchronized pattern. Most people don't see past the happy grin.

Running and splashing. Splashing and running

Our days are long and wet and sandy and sunburned. At the end of the day we collapse exhausted but happy. I will write some deep, thought-provoking post someday soon... Maybe in September ;) or maybe something will come to me before that.

Stay tuned for a camping update though, we are going on August 1st for 10 days!

 

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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