Showing posts with label son. Show all posts
Showing posts with label son. Show all posts

Wednesday, 9 October 2013

Interview at One Quarter Mama Blog

Dada and Little Man lying on hotel room bed
Me watching some TV with the Little Man.
Okay, this post has nothing to do with atheism, so if you're not in the mood to read a little meta then please move along.

Anyone who is a little curious about who Godless Poutine is can go read about me at my wife's blog One Quarter Mama:

Wondrous Wednesdays - Dada!

Of course, I'm Dada.

It's about life in the Poutine household, autism and disabilities. If you're a parent you may find it extra interesting!

Sunday, 3 March 2013

In Need of Woo-Less Help For Parents of Autistic Children

(source)
I don't usually complain about my personal life on this blog, but today was rough, really rough.

Both my wife and I likely picked up a bad cold from our son, who has apparently completely gotten over the one that's been dogging him over the past week.

His cold has been responsible for much lost sleep for us and him both but today he was fine and we're entering into the worst of our own infections.  It's a den of plague and suffering at the household this weekend.

To make things a little worse, my son is on the Autism Spectrum.  We love him dearly, but it can be a real challenge to our nerves dealing with him sometimes.  Just imagine the usual battle of wills and arguments that three year olds present on steroids. And he's full of near-hyperactive energy and bored while we're having a hard time keeping our eyes open. Today was a test of will.  For a brief moment I thought of the support groups out there an how parents who believe in a god cope.  Is it easier for them?

A simple search for autism and prayer brings up Autism Sunday which we just missed by a couple of weeks.
Autism Sunday, also known as the International Day of Prayer for Autism and Asperger syndrome, is observed annually on the second Sunday of February.
This seems like a fairly innocuous event.  Although the prayer achieves nothing whatsoever, it's nice to know people are at least meditating on the problem and focusing in on it.  One can only hope that some people take the next step and do something substantial rather than believing a simple prayer is enough.

But then things start taking a turn for the worse with this article at Pat Robertson's 700 Club, MIRACLE Indonesian Boy Healed of Autism.
"I thanked God because He was starting to heal William," Hilda says crying. "I was so joyful. He began to understand when we would call him. And when we would ask him his colors, he answered correctly." 
William quickly progressed to the point where he was able to attend a regular school with children his age. God had healed him of autism!
I'm happy to hear this boy is doing better now, but what does this do for others with this problem? If only God could be a more effective cure for all those other children with Autism.  I guess he works in mysterious ways.  At the end of the day, it's woo.

Then there's the Child of Destiny website.
JACK AND REBECCA SYTSEMA are both ordained Christian ministers who have been involved in international prayer ministry since 1993. They have also been involved with many autism groups over the past several years.
On their page Autism Strategic Prayer Network, they call upon people to pray daily to get God to help scientists out in finding cures and treatment strategies.
Because we believe so strongly in the power of prayer, we at Children of Destiny are now working to compile a list of people who feel called to pray for what is going on in the autism world. This network of people, who will be known as the Autism Strategic Prayer Network (ASPN), would be receiving periodic, as well as emergency, emails asking for prayer for important issues, events, and occurrences related to autism. 
Our goal in forming the ASPN is to identify and network intercessors who feel particularly called to pray at this level, and to make a significant impact in the world of autism through the power of prayer. The three main prayer objectives we focus on are:

1. That any and all causes of autism be exposed and recognized by those in authority so that the epidemic of autism is stopped;
 
2. That God would give strategy for how to best help those with autism medically, educationally, and spiritually; 
3. Those who are affected by autism would have all the necessary medical, educational, and spiritual resources available to them.
I know, I know.  What kind of lousy messed up God would even bring Autism into this world and why would he need such insistant prodding?  But I am not tempted to point out what a dick head he is.  Instead, I can only see that, as Christian ministers, this is what they have to lean on for comfort and support.  This is their support network when things get tough.  Of course it doesn't help and does nothing concretely for their goal, but it's not about that.  It's about community and shared suffering and challenges.  It's a shame it has got to have so much woo.

Then there is the insane den of woo that is Autism One.  It decks itself out as being a legitimate scientific convention and forum for parents to have access to the latest in therapies.  But it turns out to be a forum for self-serving entrepreneurs to peddle unscientific, abusive and dangerous so-called treatments for Autism. Downright dangerous woo.

But what's my point here?  My point is, it would be nice to have an organization out there to help support parents of children with Autism who are skeptical and rational.  Those of us who are not prone to jump onto the woo and religious bandwagons and for whom these crutches that people often reach for in times of utter desperation are no better than smoke and mirrors.

Fellow skeptics, humanists and atheists, lend me your ear.  Does such a group exist?

Wednesday, 27 February 2013

Science For a Three Year Old - Any Suggestions?

My wife bought a solar system fridge magnet set
off the Internet a few days ago.  I think the song
How Many Planets? sparked his interest in
the planets.  If you watch the video, the kid
looks a little like a young Carl Sagan to me - 
maybe it's the earth-tone outfit.
So my little guy, three years old, is starting to get interested in science!  I've been looking around for science material that he would be interested in.

Awhile back I bought him Here Comes Science by They Might Be Giants.  This is an amazingly catchy set of songs that has yet to drive me insane after many dozens of plays.

He can identify the planet Earth and says "We're here!" and has on one occasion pointed out the rudimentary properties of the digestive system - how food goes down from his mouth through to his stomach and out the other end.

The little guy was transfixed with Here Comes Science and as soon as he saw it and now even asks for it by name.  The idea of inspiring children about science with song is an excellent one.  Carl Sagan's Cosmos had a Vangelis soundtrack that did the same to me in my tweens back in the eighties.

Anyway, I highly recommend Here Comes Science.

The maker of amazing Youtube videos, MelodySheep, recently came out with a CD full of science inspired music, Terra Lumina.  I might pick this up for myself.  It's sort of more adult music and I don't think it would hold my kid's attention.  But his awe-inspiring single Our Story in 1 Minute blew my son's mind and had him wanting to watch it over and over again.  I've posted this video before on this blog.

Other than that, I really don't know of any other science music or videos age appropriate for a three year old.  Can anyone give me some suggestions?




Thursday, 1 November 2012

Apraxia

Kaufman speech cards are used to treat Apraxia.
This post is only peripherally about Atheism.  It's a post about my personal life and how my wife and I are attempting to properly identify and treat our son's developmental delays.

But, in the end, it's often day-to-day life experiences that really remind people why they believe or do not believe in a god.

Much has changed since the last post about my son and his Autism/ASD.

Maybe it's because he's getting bigger and it's a littler harder to handle, but he seems to be having sensory overloads a little more often these days.  Maybe it's all the doctor appointments - he's tired!  An overload usually means him flailing about the room thrashing his head around and generally being completely hyperactive.  Wrapping him in a weighted blanket often seems to help.  It's hard to explain in words, but you would know what I mean if you saw it.

We took him to an Occupational Therapist and she told us he is intellectually and functionally on par with what they understand an average three-year-old to be.  That's a relief, but we always knew that.  She confirmed his speech was delayed as well - something we also knew.

He now seems to be talking much more but he's very difficult to understand.  It's not senseless babble, but rather syllables seem to collapse into each other and sounds drop out at the front and end of words.  It's like he knows what he wants to say but things get jumbled up on the way down from his brain to his mouth.  So we brought him to a Speech Therapist and it looks a lot like he may have Apraxia - but he's still too young for a formal diagnosis.

My parents have said that I was a late-speaker.  Unfortunately, they are also convinced there is nothing at all wrong with my son and that the ASD is a kind of medical fad.  This makes it very hard for us to rely on their information.  Furthermore, it was over 35 years ago!

My wife made an elegant post about this.  In it she thought about God like I did when I came to grips with him getting diagnosed as being on the ASD.

The other overwhelming thing to me is to think, gee, he's both ASD AND apraxic. Like, holy hell, there is no God! Seriously, who would do that to someone? Especially a kid! Argh, I just need a few moments of "why him? Why me? Poor him! Poor me!" and then I'll have to let it go or it will depress me. There are many days I believe he is more resilient and determined than I am.
Here's the rest of the post, which contains a description of Apraxia: Geez, Apraxia AND ASD?

Thursday, 6 September 2012

The Poo Poo Park

Here's a couple of vignettes centred around a small park at the end of my street in my very working class neighbourhood in Montreal.  My son calls it the poo poo park.

I'll warn you that the second part contains a lot of reference to dog feces.  If you find mention of feces offensive then please move on and perhaps you should also consider not having children!

Soccer Ball And Wood Chips

After work I often bring my three year old autistic son to the park at the end of the street.  He loves it there and our visit always starts with him squatting in the dust and wildly brushing it into the air with his hands.  

His concentration is so strong when he does this that I need to call his name loudly four or five times before he even responds only to squat back down again and continue the play seconds later.

He then moves on to the swing and I will push him on it for awhile.  When I stand behind him he usually sits calmly looking at the trees.  He'll occasionally make observations about the squirrels that live inside them and eat leaves.  But when I stand in front of him and push he lights up and squeals with delight his arms waiving and says weeee!  I sometimes wonder why it matters whether or not I am standing facing him - Is he doing this to make me happy?  Is he merely producing the expected behaviour?

The next portion of the ritual involves going to a section of the park containing wood chips.  He derives immense pleasure from picking up the chips and letting them fall slowly onto the grown and watching them as they travel through the air.  Occasionally he will throw the chips in the air or rub them onto his head.  I don't stop him - he is laughing when he does this, whether I'm facing him or not.  In fact, I am not there when he does this - he is in his own sensory world.

The last time I went to the park I brought along a soccer ball.  I was never a sports person.  My marks in Physical Education were dismal and I was always the last to be chosen for the team - which helped my self esteem immensely in high school.  I still dislike watching sports on television.  I just never got it - what's the big deal?  But my son likes the ball, so I brought it along.

I kicked it around the park and something interesting happened.  My son got very excited and ran after the ball with me.  Once or twice he threw the ball back to me but this soon gave way again to the wood chips.  Interestingly, he would chase after the ball alongside me with wood chips in hand.  When he caught up with it he wouldn't kick it back.  Instead he would throw the chips at the ball, look at me and laugh happily.  I found it funny too.  We were sharing a moment - we weren't doing it right - but we were playing together.

First a little background.  If you read the third article in the document (God, I would love to play!)  From the Child's Voice on the Facebook Autism Page, you may get some extra insight.

The Poo Poo Park

Chalk grafitti on a wall that borders the poo poo park.
I live in a working class economically depressed neighbourhood.  People here often lean hard on drugs, cigarettes, alcohol and downright bad eating - not necessarily just because they are poor but to get them through their days.  It's a kind of vicious cycle around here.  You see the signs of poverty and addiction and it makes you sad and you crave the very things that put you in the situation in the first place.

There seems to be very little community pride and everything seems to be an outward manifestation of the life situations of many who live here. The streets are generally full of garbage, stained mattresses and dog feces.  And then there is the poo poo park.

To be crude - it's always been full of shit.  It was so bad that I stopped taking my son there because you could smell the dog turd on his clothes when you got back home with him.   It was revolting - kids two years old and up were playing in this.

Sure, I understand that every park has poo in it.  That's just to be expected.  But this park was over the top.  There were fossilized turds everywhere you looked.  It was a full time job supervising my son ensuring he was navigated around the excrement obstacle course that this park had become.  People were letting their dogs crap in the park - they didn't seem to care.  I don't think they were bad people - maybe just tired people or people who were pre-occupied with their own problems.

Then while passing through to pick my son up from daycare I noticed some chalk graffitti on the a wall that borders the park.  It appeared alongside some other typical stuff but it was a pretty strong message.
NOS ENFANTS MANGENT DES MEGOTS ET SE COURENT AVEC LE VERRE } SVP RAMASSEZ-VOUS
Which translates roughly to:
OUR CHILDREN ARE EATING CIGARETTE BUTTS AND ARE RUNNING (or maybe  PLAYING) WITH PIECES OF GLASS } PLEASE CLEAN UP AFTER YOURSELVES
Over the next few weeks the park underwent a kind of transformation.  It was completely unexpected for me - I had lost all hope for the poo poo park.  The feces started to disappear, the smell became less and less noticeable.  The broken beer bottles also became more and more scarce and I felt like I could let my son play freely for the first time in quite awhile.  And our hallway no longer smelt like dog excrement upon his return home.

I learned something.  Sometimes people just need reminding.  Sometimes they just need a good reason to keep things together - if not for themselves then for the children.

There was a big rainstorm a few nights ago.  I returned to the park yesterday with my son to be greeted by a fresh dog stool near the slide.

Again, lesson learned.

Monday, 27 August 2012

Not Enough Time to be a Skeptic? (Part I: Hyperbaric Oxygen Treatment)

Pictured above is a hyperbaric chamber.  The woman below
is lying with her pelvis inside the FAR Infrared Dome and
her feet are relaxing on the Sun Acon Chi Machine.  It all
looks very futuristic to me - if your idea of futuristic is the
technology off Space 1999.  Both pictures are from
pamphlets found in my swag bag from the conference last 
week.
Last week I wrote about meeting another parent of an autistic child - or rather a parent who seriously suspects his son is autistic.  He was the salesman who sold us our snappy new car.  We left the salesman a brochure for a new annual conference Montreal Autism in Motion 2012.

(Our new car is bright green.  My son chose the colour.  I had a green car when I was his age too.  It was my favourite toy in the world.  It's funny how genetics works.)

We went to the conference the Sunday before last and on the whole it was pretty good.  Although we didn't have enough time to listen to any of the speakers.  There is so little time.

We went mainly for the exhibitions and there was surprisingly little woo in quantity.  Occasionally I heard talk about homeopathy.  But this only seemed to be whispered peripherally into conversations - as if they subconsciously knew it was ridiculous.

What I did find was a couple of big Woo Fish in a small mostly-woo-free pond.  In this post I'll comment a little on the first questionable treatment I ran into: Hyperbaric Oxygen Therapy.

I'll comment a little more on the far out Infrared Dome and the Sun Acon Chi Machine in a future post.


Part I - Hyperbaric Oxygen Therapy (HBOT)

Promoting healing for a better Quality of Life!

There was a prominent display purporting that increased oxygen for an extended period will help autistic kids.  Here's a brief synopsis of what it is from the Wikipedia article on Hyperbaric Medicine.
Hyperbaric medicine, also known as hyperbaric oxygen therapy (HBOT), is the medical use of oxygen at a level higher than atmospheric pressure. The equipment required consists of a pressure chamber, which may be of rigid or flexible construction, and a means of delivering 100% oxygen. Operation is performed to a predetermined schedule by trained personnel who monitor the patient and may adjust the schedule as required. HBOT found early use in the treatment of decompression sickness. But it has also shown great effectiveness in treating conditions such as gas gangrene and carbon monoxide poisoning. More recent research has examined the possibility that it may also have value for other conditions such as cerebral palsy and multiple sclerosis, but no significant evidence has been found.
Hold on to that last phrase, no significant evidence has been found.  That's pretty much key to all of this.  The pamphlet is clever in only making positive claims that can be backed up and then it sort of throws Autism in with a kind of slight of hand.
Hyperbaric oxygen is a versatile therapeutic technique that is capable of providing impressive results in a number of conditions that are seemingly unrelated.
This is true, as the quote from Wikipedia above mentions.  Notice no mention of Autism yet.  The brochure immediately dives into the details.
How does Hyperbaric Oxygen Work?
Hyperbaric oxygen assists healing by activating the growth of new blood vessels, mobilizing stem cells, reducing edema, enhancing the function of the immune system and eliminating toxins from the body to provide the trigger for activation of many of our body's normal healing processes.
Again no mention of Autism directly.  I think there may be something implied here when they claim the process eliminates toxins.  There's a significant crowd that believe that autistic children are actually poisoned by heavy metals.  It's possible - I wish we knew.  Our environments have changed so much even in the last 50 years.  There are more chemicals, more plastics, more preservatives.  But there is no science yet to tell us where the toxins are coming from.

The pamphlet goes on to finally mention Autism.  But notice the wording - Who can benefit from Hyperbaric Oxygen?  The answer is not direct but rather an acknowledgement that Autism is treated at their center.

An example of where mainstream science accepts hyperbaric treatment is then given.
Studies have shown that HBOT is effective in healing diabetic and other difficult wounds that otherwise have not responded to conventional wound healing procedures in many cases avoiding amputation. 
The Wikipedia article does mention that this treatment has had success with healing wounds for diabetic patients.  But it's difficult for me to see any connection between all the established uses for this treatment and Autism.  It's sort of like saying the whole Bible is true because it got some of the geography of the time right.

Towards the end of the pamphlet we run into the only other reference to Autism.

Parents of children with cerebral palsy, autism, and other neurological conditions have reported significant improvement in global development.
I don't mean to diss the parents.  They have it the worst of everybody.  And it pains me to say that this is hardly scientific.  It's sad.  I wish it were an effective treatment but there just isn't any compelling evidence.

It's much worse than this though.  My wife spoke to the presenter and the recommended course of treatment is forty daily one-hour sessions over forty consecutive days.  The insurance companies won't cover this (because it's not scientifically demonstrated medicine).  My wife was quoted something in the order of $5,000!  When she asked if we could simply try it out maybe once a week for awhile and see if we find any small improvement she was flatly declined.  The presenter didn't want to let people go halfway and have it not work - that would be a waste of money.

I imaged how I would feel if I had to first dig $5000 into my line of credit.  I would then need to somehow find 40 consecutive days off work because they only do the therapy during working hours and it's well off-island.  I'm sure some parents may quit their jobs!  I would then stick my son into a tube for hours and hours - nevermind all the driving with traffic and missed naps!  With all of this I truly believe my brain would need to buy into a strong placebo effect as a way to cope!


Science Says...

The display had signs and books proclaiming in large letters that all this was backed up by science.  They even had a medical journal open to a scientific paper that proved hyperbaric treatment helped autistic children.  I believe I found mention of this in Wikipedia:
One small 2009 double-blind study of autistic children found that 40 hourly treatments of 24% oxygen at 1.3 atmospheres provided significant improvement in the children's behavior immediately after treatment sessions but this study has not been independently confirmed.   
More recent, relatively large-scale controlled studies have also investigated HBOT using treatments of 24% oxygen at 1.3 atmospheres and have found less promising results. A 2010 double-blind study compared HBOT to a placebo treatment in children with Autistic Disorder. Both direct observational measures of behavioral symptoms and standardized psychological assessments were used to evaluate the treatment. No differences were found between the HBOT group and the placebo group on any of the outcome measures.   
A second 2011 single-subject design study also investigated the effects of 40 HBOT treatments of 24% oxygen at 1.3 atmospheres on directly observed behaviors using multiple baselines across 16 participants. Again, no consistent outcomes were observed across any group and further, no significant improvements were observed within any individual participant . Together these studies suggest that HBOT at 24% oxygen at 1.3 atmospheric pressure does not result in a clinically significant improvement of the behavioral symptoms of Autistic Disorder. 
Nonetheless, news reports and related blogs indicate that HBOT is used for many cases of children with autism. HBOT can cost up to $150 per hour with individual’s using anywhere from 40 to 120 hours as a part of their integrated treatment programs. In addition, purchasing (at $8,495–27,995) and renting ($1,395 per month) of the HBOT chambers is another option some families avail of.  
When considering the financial and time investments required in order to participate in this treatment and the inconsistency of the present findings, HBOT seems to be a riskier and thus, often less favorable alternative treatment for autism. Further studies are needed in order for practitioners and families to make more conclusive and valid decisions concerning HBOT treatments.
So we have a few studies - one small one for and several against.  This is not science.  Nothing has been reproduced here.  How can they charge $5000 for this?

There is an excellent summary of the situation on CFI's Committee for the Advancement of Scientific Skepticism (CASS) website: Hyperbaric Oxygen Treatment For Autism - Clearing The Air.  They further refute the initial study.

Furthermore, if you manage to get your hands on the refuting journal article by the Center for Autism and Related Disorders (CARD) - only the lay press release can be found here - they have a Conflict of Interest section specifying that one of the researchers actually works in a center that provides hyperbaric treatment !

If this person is willing to go on the record refuting the sole study that would go to scientifically support their provision of this treatment to autistic children then I don't see much point in taking the initial study very seriously at all.

But this Facebook response to the above CARD findings pretty much summarizes a lot of the response I see in the Autism blogosphere I've encountered so far.



An Uneasy Tension Between The True And The Woo

A boy with ASD, and his father, in a hyperbaric oxygen 
chamber. (Image and caption text source: 
It's completely understandable why parents feel this way.  People are desperate - their children are sick and nobody knows why.  If there is any chance... I heard this works with X's child... With the right diet...

There is a real tension I feel as a parent of an autistic child between my skeptical mind and my paternal instincts to love and protect my child at any cost.  Everyone tells me I need to do something now while he's young to maximize his potential later on as an adult on the Spectrum.

Often the woo is very difficult to resist as the days turn to weeks and the weeks turn to months and you feel that critical point in your child's life where intervention would be most effective pass you by.  What if Science finds that toxin X is really the cause or therapy Y is an effective near-cure?  This is wonderful for future generations but what about my child?

I believe most parents are interested in the scientific literature an progress.  They don't want to be duped by charlatans or woo peddlers who may or may nor believe in their own therapies.  But they have their child who is sick and they don't know why.  There is a feeling of urgency - something needs to be done now to help their child.  I can understand these feelings - I have them myself.


Wikipedia mentions an important point.
Over a hundred treatments for autism are in use but unfortunately, the desire to develop new and alternative approaches often surpasses the scientific community’s pace at assessing them.
This treatment was never an option for me.  It's so expensive that I would require substantial evidence of its effectiveness before I would go into debt to use it - $5000 would pay for quite a bit of more established therapies.


Time Time Time...

I think many parents feel Trapped In Time.  Having a child with autism alongside a full-time job can limit any time available to investigate truth claims skeptically.  This is a straight-up lack of time.

We also have people constantly telling us that the greatest window of opportunity to help our child is now. This is time a'tickin'.  I don't know about other countries, but here in Canada most of our time was spent trying to convince doctors he has a problem, then getting a diagnosis.  We're now spending time waiting for placement into the affordable programs and even some non-affordable programs.  All the while waiting for the doctors and the government:  tick... tick... tick...


If it's Cheap Enough...

We are also moving toward a more gluten free diet.  It's something I heard works but there is no scientific evidence.   We are not considering a move towards elimination of casein.  Of course, there is no real scientific motivation for choosing one, both or neither.

Again ... it's lack of time.   I try to be a skeptical person but what if this helps?  I want to avoid the pseudo-science nonsense but why not try it?  It's cheap - it's not $5000 - and maybe we can afford to be wrong?  

If I simply acknowledged that it is not scientifically confirmed could I still accept myself as being a good skeptic?  How does this make me any different than those who swear by the oxygen therapy?  Would it be okay if I call this an experiment and see where it goes?  Would it be fine if I just give it a try but make no universal claims to its medical effectiveness?

But opinions are fluid.  Having read the Wikipedia article I can feel any hope I had regarding the gluten-free diet fading fast.  I suppose we'll see where it leads us.

Hey!  No pressure!  My son's entire future may be on the line.

Saturday, 18 August 2012

Nate Phelps delivers a powerful message

I just finished watching Nate Phelps, estranged son of Westboro Baptist Church preacher Fred Phelps, deliver a 90 minute talk that had the room so silent you could hear a pin drop.

The talk was put on by CFI Montreal and I must say that there must have been no more than 50 people in attendance.  It was so intimate that when the microphone cut out (which it did often during the talk) nobody had any problem hearing his powerful and masterful recounting of his extremely difficult childhood.

Friday, 17 August 2012

Autism, Autism Everywhere

I've heard that Mazda deliberately makes the front of their
new cars look like a smiling face.  My son loved them all as
do many autistic children love the smiling faces of the
Things have been busy lately.  Lastnight, my wife and I bought a new car to replace our 11 year old Pontiac that's starting to get too crotchety.

The night before, while we were talking to the salesman, I couldn't help but notice a digital picture frame on his desk showing his kids.  His son had big beautiful eyes like our son and there was a certain way he smiled in the picture.

Most people are unlikely to understand what I mean here, but if you are a parent of an autistic child or know one you might get what I'm talking about.

The kid's eyes were closed and his teeth were sort of clenched together.  Although it looked like he was genuinely happy, the smile looked contrived somehow - as if it were put on just for the picture.  I know everyone has put on fake smiles for pictures in the past, but they often are not as exaggerated as this smile.  I've seen pictures like this before on the Internet and it immediately brought up a red flag.  I didn't bring anything up though - I would never just bluntly ask hey is he on the ASD spectrum?

The salesman saw us looking at the pictures and introduced the little boy as his son.  He then immediately asked us how old our son was.  We'd discussed him before - that's why we were interested in the green car.  He had been asking for a new green car and oddly when I was three and four my favourite toy was a green car!

He asked us if our son spoke much yet and we told him he was delayed because he was on the spectrum.  Apparently his son was delayed in speech as well and they had brought him to several therapies for speech. He also had very particular eating habits and wasn't able to maintain any sort of concentration on them for more than a second or two.  He would also actually gag when he smelled his own urine and nearly throw up (overly acute sensory processing). All of these were early signs of him being on the ASD spectrum so he was waiting for an appointment to get him an ADOS test.

It's interesting because I recognised this with a single photograph that illuminated the frame for only seconds at a time before cycling to other more normal photographs.  When you are a parent of an autistic child autism starts to appear everywhere.

The salesman we spoke to was not in to close the deal lastnight, but we left a brochure on his desk for this weekend's conference on autism in Montreal - Montreal Autism in Motion 2012.

I have my own reservations about the kind of depressing woo I'm going to run into at this conference and I hope it actually won't prompt another post on this blog (although I do see a book by celebrity anti-vaxer  Jenny McCarthy on the splash page of the conference and that elicits some fairly strong feelings - read: Bad Astronony).  Desperation will lead the most rational minds down paths of woo - sometimes dangerous woo - when it's perceived their children may be at risk. This is understandable.  I still think this conference will be of value for me, my wife, and our car salesman.

I guess a picture is worth a thousand words.

Monday, 6 August 2012

Plunged into a sea of anti-vaxers.

Just a short post while on break.

My wife and I are excited about going to a local conference on Autism in the coming weeks, Montreal Autism in Motion 2012.  Our son was diagnosed on the ASD awhile back and we're always on the lookout for new ways to help him flourish.  I just took a look at their Facebook page this morning only to find links to two anti-vaccination articles.

CBS News: How Independent Are Vaccine Defenders? - I haven't watched this piece yet, but all you need to do is take a look at the comments section to see a vast wave of anti-vaxs.  Conspiracy theories are just a small jump away from most of the comments here.

Parents, not the state, should decide whether to vaccicnate - Another piece that I have yet to read.  My question is, if the majority of scientists overwhelmingly agree that vaccinations prevent many dangerous and potentially fatal childhood diseases, would it not be abuse to deny your child the protection?  Especially when all links to autism have been discounted.

CBS news should be ashamed for merely feeding a fearful mistrust of medical science.  A University of Michigan page on the fears of vaccination sums things up well (quoting Dr Matthew Davis):
“Parental concerns about the safety of vaccines have increased markedly over the last decade, due to alleged but later disproven links between vaccines and autism and related concerns about mercury and other preservatives used in vaccines.  
“Assurances from health care providers and government officials that vaccines are safe have been insufficient. Rather, it’s clear from this poll that parents want more research about the safety of vaccines for their young children and adolescents.”
The poll showed that parents were most concerned about research into vaccine safety.

Wikipedia has an excellent article on the whole MMR vaccine link to autism which later turned out to be a fraudulent claim with no scientific basis.

I have nothing against the conference or its organizers and I will attend.  But as a skeptic, it's just one more thing that is likely to add some stress to an already stressful and uncertain situation.

Monday, 9 July 2012

Lorenzo's Oil

The real-life Lorenzo Odone prior to being
diagnosed with Adrenoleukodystrophy.
I watched the movie Lorenzo's Oil over the weekend.  It was one of those situations where I knew it would be a gut-wrenchingly sad film just by reading the description, I didn't want to be sad, but I just couldn't help but watch it.  It's an excellent film about a story that was both very sad and very inspirational.

The movie is about Lorenzo Odone, a boy who was vibrant and completely normal until age of seven when he began to deteriorate quickly.  Eventually he was diagnosed with a rare genetic disorder that was causing his whole body to be poisoned and his brain to be destroyed:
 Adrenoleukodystrophy (ALD).

During his time the only option was palliative care - trying to make them as comfortable as possible before a swift death within two years.  But Lorenzo's parents refused to accept this and actually managed to come up with an oil that can slow the progress of the disease significantly.

Wednesday, 4 July 2012

My Son's Report Has Arrived

My son is almost three years old.  He has the longest thickest lashes of any child I have seen.  I never notice them much but women seem to comment on them all the time.  These much envied lashes rest on top of two enormous green eyes that gleam with his smiles and shimmer with tear soaked rivulets when he cries.  Yesterday evening a woman complimented him on his lashes at the park.  She think he'll turn out to be a stunner. I take him to the park after daycare when the weather is good.

That evening he played ball with the other children.  He shook with excitement when he swooped in to kick the ball and flapped his hands back and forth rapidly.  The other kids played with him and he will either kick the ball or pick it up and gently deliver it back to its owner.  The young soccer player who owned the ball thought he was a sweetheart.

After two minutes of play the other kids continued playing but he broke off and went to a bush alongside the perimeter to tickle it with his hands and feel the leaves brush against his face.  He's big on sensation.  Sometimes he hurts himself and doesn't seem to register the pain.  He would hug and embrace the branches and crouch down in the quiet darkness of a cavity inside the bush.  There was silence for about a minute and then I heard a gentle whisper "Dada, here... Dada."  I crouched down to join him and he would gave me a kiss on my face and then a light switch went off in his head.  His body tensed up with extreme excitement and shook - he squealed with delight and returned to playing ball for one minute with the children - then back to the bush for two - then back to the ball.

He's three months short of three years old.  He just started putting words together into phrases.  Almost always one of three or four verbs and a single direct object or indirect object.  Lots of pointing.  Lots of gesturing and grunting still.  I can remember I was so happy when he did put together a phrase - so relieved - I still am.

In the bush I heard a quiet whisper "Go... swing." I need to carry him to the swings because his feet are too sensitive to the sand. I plopped him into the seat and pushed him - his eyes glazed over fixed somewhere into the horizon as he settled into his zone. He doesn't really smile or laugh when I push him - well very rarely - but he will get upset when I stop. In the silence I thought of a half an hour earlier.


I had gotten home and checked the mail and there it was.  The official ADOS report diagnosing him with being firmly on the ASD (Autism Spectrum Disorders) scale.  The results weren't a surprise.  The psychologist had already shared them with us weeks ago and they only confirmed something we had suspected for months.  My wife knew since almost the beginning.  This report is the ticket to important and urgently needed government funding for speech therapy, socialization skills and behavioural therapy that apparently do wonders if applied early on - if they are applied within this critical window.


He's one point shy of the cut-off for autism which puts him in a highly functioning mostly undefined nebulous region that could be pretty much anything.  The spectrum is broad and varied.  No two kids on it are truly alike.  When I see other kids with full blown autism, I can't help but feel lucky that he is where he is on the spectrum - then I feel a little guilty for taking this comfort at someone else's expense. It's selfish but I can't help it.


Today I started thinking about how it might have been like if I had remained Catholic and had to deal with this.  To the very bottom of my heart I am happy that I do not believe in the existence of any god.  I honestly don't know how people of faith can deal with situations like this - but the closer I go to the spot I was at when I believe in faith the more pain and confusion I feel inside.


What would I say to myself knowing that there is someone out there who caused this to happen or let it happen.  Someone who knows why it happened but doesn't care to share this information.  Who would I blame?  Myself?  God?  No, it couldn't be God's fault.


If God existed and is all-powerful, what are his motives here?  I really wonder how religious people handle this.  Do they start out confused or angry at their god and then, through exhaustion, lose the strength to hate and move on to forgive and then eventually start equivocating?  It's a special gift.  It's to give us strength.  God has his purpose.  He will be cured in Heaven.  Would he be the same little boy in Heaven?

I don't know.  But something I do know is that if God did exist I would despise him with all my strength and demand he help my child.

I love this child with all my heart but I would change parts of him if I could.  I would improve his speech, I would help him along socially, remove his compulsive oral fixation that causes him to eat all kinds of crazy things.  I would strengthen his coping mechanisms.  In short, I would do what I will do - give him the best help science can provide.  What parent wouldn't?  If God existed he would be the cause of the problem, not the solution.

The materialist Atheistic understanding of reality relieves me of confusion and brings me the comfort of at least knowing what wasn't the cause.  It wasn't the act of some big mysterious God.  It was the result of natural unthinking processes.

Now I don't have as many questions that can never get answered.  I have nobody to blame, nobody to question, nobody to hate.  I have nobody to petition those long nights - pleading for a miracle or at least some progress.  I have nobody to fall back on but myself, my wife and the team of professionals we shall amass around this little guy to bring him to his full potential.  It is not a god that will help him be all that he can be ever in this only life he has to live - it is us humans.  I am doing what fathers do, my wife is doing what mothers do, we are all doing what humans do.

He has had enough with the swing and I let him run around the park for another five minutes before putting him in his stroller to go home.  He screams bloody murder for five minutes and then settles down with the rhythmic thud of the concrete sidewalk blocks moving under the wheels.  I let him walk up the stairs into the house - he's so proud of this and I am too! - and I bring him into the bathroom.  I begin to wash the dirt from his feet with his washcloth.   I realize that for the first time he actually walked on the sand himself for awhile in the park.  It's a small achievement but an achievement nonetheless.

He reaches out and takes my head with his hand and looks into my eyes with a mischievous grin.  Pulling my ear to his mouth and leaning forward at the same time, he begins to whisper little noises into my ear.  Not real words, just whispering noises.  I think he saw this in a cartoon recently - we both enjoy playing this little game.  When he's done whispering his secret he crouches down with his hand on his mouth, giggles and says Shhhhhh!  We both laugh.  I love this charming little guy - I love him as he is.

Then I feel something wet on my arm.  He smiles and says quietly "Clean Dadda".  As he rubs the wet washcloth on my arm I realize he's cleaning me.

Sunday, 17 June 2012

Fathers and Sons

Requisite sappy picture.
More of my personal life.  Feel free to ignore if you're not interested.  I promise to have the regular posts out this week.

I've been taking care of my little 2 ⅔ year old son since last Wednesday.  Momma has been out west helping her best friend manage a toddler and a newborn - she gave birth just a couple of weeks ago.

Over the past few days we've really gotten to know each other better.  He's been tested and currently places on the mild end of the ASD scale (I'm likely right there with him) - thanks non-existent God.  So the little guy doesn't take too well to change.  Momma also recently got a new job so he's started daycare.  Tough times for the little man.


Friday night the landlord decided he would refinish the floors next door causing noxious fumes to seep into our apartment.  We knew this would happen and had planned to bring the little man to his grandma's for a sleepover.  Well, that proved to be too much change for the little guy - too many variables had shifted in his life.  He cried for a good portion of night.

Last night the fumes were gone and things seemed to go well at first.  But at 3am he woke up screaming and I ended up watching toddler TV with him in my arms until 4am, when he actually walked himself back to his room and went to sleep.   His grandma came to take him off my hands for the day as a Father's Day present, but he would not have that.  Finally it was settled I would sneak out after putting him down for his nap.  I'm in a cafe at this moment just 5 minutes away from home.  Should he awake with me away I'm certain I'll see him walking down the street with grandma to the cafe.  I'm sitting near the window and cast glances out every 5 minutes expecting to see him.

No Heaven, no Hell.  This is what we've got to work with.
I never knew what it was like to love someone until I had a child.  I've never worried more than I do now for my child.  The state of the world, environment and the political climate in my country never meant as much to me as it does now.  Watching starving children in other countries has never cut me so close to the bone as it does now and never have I been as charged to activism.  I want to help the children now.  I want to clean the world - I need to fix the world. It didn't mean anything when it was just me - fuck that, I just die and the cockroaches rule the planet.  The child brought me so much meaning - more than belief in God did.

God is fucking useless at protecting my child.  Look at the fantastic job he does in Africa and India.  The only people who can protect the children are people.  Human beings who love their children and the children of others.  Human beings doing something to make things better - however they can.

I love this kid more than anything and he loves me.  This gives me energy to make things better for him - to sift through the bullshit on his behalf.  His very existence means more to me than any homily, any church song, any musical masterpiece any fine meal, any gadget, any sunny day on a terrasse.

I love you, little man.