Turning Lemons into Lemonade

So David and I just returned from our meeting with Erin Flaim and Lisette Cormier of Metro Transit.  It was, as we had hoped it would be, a very productive and positive meeting.  Although we were not allowed to view the surveillance tape as we had hoped, we did receive some feedback about what happened.

All parties agreed that the situation was handled poorly and that statements made by both parties were taken out of context in the reporting of the situation.  Including the statement made by the Metro Transit official not at the meeting, that the camp was riding the bus for free.  We knew this to be a false statement, and it is from our understanding now that Metro Transit did not intend for this message to come out.

A point of disagreement about the situation came in regards to the claim that the safety of other passengers was compromised by Izaak’s behaviour.  Metro Transit leaves this up to driver discretion.  Izaak was on the bus for somewhere between 3 1/2 and 5 minutes before the driver pulled over and said that he couldn’t continue.  I asked what the Metro Transit policy was for crying babies, to which I was told that it is up to the driver and assessed on a case by case basis.  I wanted to emphasize that when I made the comparison between Izaak and a crying baby, I was not doing so for metaphorical purposes… developmentally, Izaak’s behaviour, social cognition  and impulse control is closer to that of a toddler, rather than an almost 9 year-old child.  Therefore, to me, it was like asking the someone with an inconsolable baby/toddler to leave the bus.  And  (also from our perspective) 3 1/2 to 5 minutes was not enough time for the camp director and Izaak’s counselor, in their professional capacity, to calm Izaak.  But, on this point we both conceded that we had differing perspectives.

Luckily, Dave and I are the type of people who can agree to disagree.  So we were able to move on to the good and productive parts of the meeting.

Izaak will be getting a letter of apology from Erin Flaim, on behalf of Metro Transit.  It will be an apology for the mere fact that this happened in the first place and that it spiraled out of control in the way that it did.  The camp director will also be getting an apology from Metro Transit, acknowledging that he was acting in his professional capacity as camp director to speak for and defend Izaak, an 8-year-old autistic boy who can’t yet speak for himself.

Metro Transit will be doing outreach to the autism community about those who might qualify for the Access-A-Bus program.  We have found out that Izaak (and Gabe apparently) would qualify for the Access-A-Bus.  As noted in my August 1st blog, before any of this even happened, that I would much prefer to use this service with Izaak, but was told when I phoned about it, that Izaak would not qualify when he was about 5 years old.  Riding the bus with Izaak, has always been a source of anxiety for me… in fact, it was the dread of having this type of thing happen that compelled me towards Car Share.

But, in this particular instance Izaak was with his camp, therefore granting him use would still not have prevented this incident.  This camp is a very special and unique camp that allows autistic kids to have the experience of a summer day camp… and take the bus to explore the city… with their peers in a safe and supervised way.  This year they even got to go surfing at Lawrencetown thanks to One Life Surf Spa and Artists for Autism.  This is the third year for Izaak in the camp, and although he can be extremely challenging to care for, he has taken leaps and bounds this summer in terms of his behaviour.  This is often the case after camp, and I often lament that the education system wouldn’t partially adapt their model.  Izaak still has moments though… and those moments are intense… I am so grateful for the counselors at the camp, as they endure and persist with even the most challenging of behaviours, and adore the kids regardless.  Unconditional love it is, as pure as it gets.

Parents of autistic children and autistic adults do require more resources than most, and that always puts the status quo on edge… because it is often said that more resources for special interest groups is unfair.  But one resource that parents of autistic children needs the most of all doesn’t even require tangible capital… community acceptance and tolerance can go a very long way.  And assistance.  Offering to help, rather than snarky advice.  These things are free… they don’t cost our community anything.

Metro Transit will be partnering with Autism Society Nova Scotia to facilitate an Autism Information Program with Metro Transit, and will work with Artists for Autism to develop Rider Tip Sheets for parents and bus drivers on strategies to prevent and deal with situations arising because of autistic behaviour. The Society of Artists for Autism will be designing an Autism Awareness bus advertisement for inside the bus which will have the website address to access this information.

And based on some of the public opinion surrounding this incident, I think it is pretty clear we have far to go in raising positive autism awareness.  For the most part, I did not read the 374 comments posted on the CBC story about this incident.  To be perfectly honest, it is downright weird to have 100’s and possibly 1000’s of people commenting on your family, talking about you around the water cooler, and recognizing you as you walk down the street.

Plus, the quality of the comments, in some cases, were downright sickening.  Suggesting institutionalization and even worse.  It was enough to prompt me to put out a call on my Facebook network to start bombarding with p-ausitive comments… but I stopped reading and paying attention to the seemingly ignorant, dark age mentality attacks that were being lobbed.

What I did pay attention to was the parents, grandparents, friends, and relatives of autistic individuals telling me how proud they were of both David and I to be bringing this dialogue to the forefront.  One man told Dave that his wife thought he was a hero… and I have to agree.  I also think that the camp director was Izaak’s hero that day… and told him so in an email I sent to him a couple of days ago.

That so many people were interested in this story, felt compelled to comment on it, related to it and felt that we were fighting a fight for them as well, indicates to me that as a culture and society we have a long way to go in terms of acceptance and tolerance of those whose brains are wired differently than most.  And this extends beyond autism and into all areas of mental health, where discrimination is rampant and effective social policy is scarce.

This will be the last I discuss the “Metro Transit Incident” publically.  I’m done talking and ready to get to work.

life@speed

I’m dealing with waves of anxiety right now.  the last 24 hours have been an intense whirlwind… very intense.  Now that the dust has somewhat settled, and our issue… our cause… is in the last 3 minutes of its 15, my protective cognitive devices are kicking in as I start to intellectualize the experience and turn it into something productive.

This story, the story of this little boy with autism, who is absolutely adorable and photogenic (by consensus)… generated so much interest that it was picked up from station to station to station across the country.  Newspapers, radio, TV, Cyberspace… the media dug in.  We figured a page 6 story on the Chronicle-Herald… maybe.

Our friends and family are amazing and supportive.  As are the autism parents I have connected with online over the years, from all over the planet who have a variety of perspectives about autism.  One thing is unanimous about all Autism Moms and Dads… they protect their cubs.

And god bless ‘em for it.  Lord knows the institutions of our society aren’t going to fight for them… because people with Autism immediately present a problem for the status quo… in that they have different needs than the status quo, so the status quo has to start making exceptions for them.  This is true, not just for people with Autism, but for all people who have disabilities that lie in the realm of brain function and cognitive processing.

The status quo easily adapts to people with physical disabilities.  We have braille on our money, closed-captioning TV, all of our buildings have to be accessible for people on wheels.  But when it comes to people with mental disabilities, disabilities that we can’t see, and that we can’t understand… the status quo doesn’t do so well in it’s adaptation.

But I digress…

The only certain conclusion that I can draw at this point in time, the only nugget I have taken from this experience so far, is that I will not be taking Izaak on the public transit system again, any time real soon.

Other than that, I have to keep digesting…

Carless no more

For the past 3 years, our family has been carless.  For the most part, it has worked for us.  Keeping the household expenses down while commuting on public transit throughout the city.  Sure, there were some inconveniences, like grocery shopping and going on outings outside the city… but even at that, we would either take taxis or bum rides from our friends and family and it was still cheaper than owning and maintaining a car.

But recently, we had been finding ourselves wishing for a car more often than not.  Especially for doing things with the boys.  Carting two autistic children around on public transit is sketchy.  Not eligible for Metro Transit’s Access-a-Bus, it meant at least an hour of preparation, especially if it was happening during rush hour.

Gabe (almost 12) loves taking the bus.  Scratch that, he simply loves buses.  He probably knows more about the fleet than most of the bus drivers… especially what ads are going to on them.  He refuses to get on particular buses because of the ads, or lack of ads on them.  He particularly dislikes single advertiser buses, like the Bell and Pepsi ones.  One day I had to wait an extra 20 minutes because he wanted to wait for the 958 – 60 Eastern Passage bus.  The alternative… him very loudly screaming “you can’t make me come with you” and having a complete and utter meltdown while judgemental eyes would inevitably scorn my inability to “control my child”.  So we waited, and sure enough, the 958 – 60 Eastern Passage came along and he happily trotted onto it where he proceeded to recite every ad on the bus until we arrived at our final stop.

Izaak (almost 9) is unpredictable on the bus.  Sometimes wonderful and easy… sometimes taking off his shoes and biffing them across the bus to hit some poor public transit rider in the back of the head with.  Izaak has very few traditional communication skills.  He talks in one or two word requests and answers, and is incapable of expressing complex descriptions about what he likes and doesn’t like and why.  He also has no idea how to appropriately interact with people.  So if we are on the bus and someone sits next to him that he doesn’t like the smell of (one of his hyper-sensitivities), he is likely to smell them then push them away by saying “no – bye bye” very loudly.  While I think it is kind of cute, the people whose smell he is offended by don’t so much.  And that’s a tame one… Izaak is getting to the age and size where if he doesn’t want to be on a bus, there’s not much we can do about it unless we are willing to subject a whole busload of strangers to one of Izaak’s meltdowns, which we are usually not.

So we’ve been really feeling like a car might make life just slightly easier for us.

We had heard about Car Share Halifax a few months ago.  I can’t recall where I heard about it, but I do remember that I had gone to the website and checked it out.  We flip flopped regularly about whether it would be useful to us and we could justify the expense.  Then about a month ago a friend of ours told us he was Retiring his Ride and he could either get $300 cash or have a $500 coupon to Car Share Halifax.  He had heard us talking about Car Share, and offered us the coupon.

Signing up was extremely painless.  The folks at Car Share Halifax are nice and easy-going.  Within one hour, I had signed up, got my membership number, had an orientation session, and was given the FOB to the Car Share Fleet.  I went from having one car, to having 8 cars, strategically placed across the city.  Even a Prius! For $9 an hour (M-F 6am-6pm), gas and insurance included.

Our neighbourhood lot is convieniently located one block away.  3 minute walk, tops.

We used Car Share a lot this week.  Mostly for transporting Izaak home from summer camp, and running errands.  I found hours last week that I did not know that I had in a day.

Another cool thing about Car Share Halifax is that it makes me feel good about being a part of it.  I am not only a customer, using a service… I am a member participating in a fabulous organization.

But perhaps the best thing of all is driving in a car which has facebook and twitter on the bumper.

So I’m sold, and I’m encouraging everyone who’s been thinking about it for the past few months to dive in and try it.  I can totally see how a service like this would be useful to non-profit and government agencies as well.  Pay-per-use is the smart way to have a car.  I’d also like to add that if it so happens that my blog has been that final convincing point for you to try it, give them my name as the referrer and we will both get a $25 driving credit for doing so!

What is Retarded?

This blog began with the title “When worlds collide” and was going to be simply a comment on the recently surfaced claim that Facebook, and other social networking sites could be causing autism… It is very rare that I see two of my “themes” so closely and overtly connected to one another.  But, as I got into the meat and potatoes of it, I noticed I was throwing the word “Retarded” around quite a bit… a word that causes a very negative reaction among the most politically correct of us… and implies a derogatory meaning.  I do use the word Retarded in a derogatory way… but never directed at individuals with cognitive processing problems… I use the word Retarded to describe the slowness of society, policy, in relation to the evolutionary processes our species have been undergoing for the past 100 years… It isn’t people who are Retarded… it’s society and the institution that is retarded…  With all those caveats put in place… this is what I have to say.

An Oxford educated expert has very boldly gone on record by making an intellectual connection between social networking and the wave of mental health issues plaguing society, and particularly autism.  “Perhaps given the brain is so impressionable, that screen life is mandating that more infantilized lifestyle. Now this is based on a little bit of neuroscience, observations, a bit of clinical evidence, there is no one single or conclusive killer fact,” said Professor Susan Greenfield in a House of Lords debate.

Perhaps indeed Professor Greenfield.

In essence she claims that all the fast, bright and shiny objects we play with online are making us a bit retarded…

Now on the heels of this story, a research study was released which indicated that the brains of kids with ADHD were perhaps developing slower than the “normal” brain… The period of childhood is, essentially, getting longer for the distracted mind.  More retarded people?!

Interesting indeed.

So we have two bits here, one suggesting neurological linkages between mental illness and a pervasive cultural phenomena, and one which may be suggesting a link between mental illness and the social phenomenon of “arrested adulthood”: the state of prolonged childhood.

While I like the notion that the Internet, and our use of it, is rewiring our brains… I don’t like the assumption that this is, in itself, is a “developmental problem” for the individual.  I think it is our society with the developmental problem.  Further, I like the notion of a neurological indicator for our defining of development… I don’t like the assumption that this is somehow detrimental for the individual living in the world today.

From my understanding, developmental norms are set by the large-scale patterns of behavioural and cognitive milestones observed within the majority.   When individuals take longer to hit those milestones they are labeled either “special” or “retarded” (depending on who you are talking to).

But what if… and entertain me a bit here… what if it was the characterization of developmental milestones that was a little bit retarded… That is, what if it wasn’t that these individuals weren’t slow in their development at all… what if the developmental milestones which have been guiding us along for the past century or so are no longer relevant for the individual existing the post-industrial world.

If, as a society, a species, and through our culture, our brains are rewiring as a means of adaptation to our environment… an environment that we, ourselves, manufacture on all levels on a day to day basis… And if the outcome of that rewiring are characteristics like those exhibited in ADHD and autism… then isn’t that just evolution?  Is there really anything we can do about it?

The notion of “slow” or “lagging” development is a tricky one for me to reconcile when considering an ADHD and an autistic mind.  It seems to me that these brains are fast… really fast… so while it might take longer to hit those developmental milestones… the in the moment processing is hyper.

Like most ideas which have guided our civilization over the last century, the notion that human development occurs along a linear trajectory is perhaps doing us more harm than good.  Further, the population of those disenfranchised from “normal” is perhaps getting so big, that we have to seriously reconsider everything that we think we know about human development, psychology and cognition.

For example:

Living in the moment without being able to set long-term goals and commitments is one of those developmental characteristics which is considered to be immature and infantile… when you can move beyond your childish ways and become a responsible adult you’ve hit one of the developmental marks of adulcy.  If you can never make that leap to adulcy, and find yourself swimming in the sea of immediacy… you are developmentally retarded.

Until about the 1960’s… looking beyond the moment, setting long-term goals, and making commitments to your family, your community and your country was perhaps an easier thing to do.  Plus, from a survivalist kind of approach, it would have been far more beneficial for individuals who had those characteristics bred in their bones (or brains) because the institutions in our society were focusing around those characteristics…

In the 1950’s it was “normal” for an individual to be schooled for 12 or 13 years (or if they went to university 16 to 20 years), and when they were finished, they entered the workforce to (most likely) settle into their career where they would pay into their pensions and follow through to a happy and healthy retirement.  Even if school was out of the picture, most people who had that bred-in Protestant work ethic could find a job where they could follow the same ‘normal’ trajectory.  Once people got settled into the workforce, they would find a pretty gal or a handsome lad to marry… then have kids and hope that they would follow the same trajectory and become more normal humans.

However those were more simplistic times, and the problems which individuals faced on a day-to-day basis were not nearly as complex as the mess we got going on now.  Their brains were perhaps developing “normally” over the long term, but with far less variation in the short term.   The problems that these simplistic, but normal, brains had to process on a day-to-day basis made it easy to find that trajectory of ‘normal’… because they were tied to routine and habituation.  It was like these brains were on auto-pilot.  Their brains were wired for their times… this doesn’t seem like such a crazy notion now, does it?

Today, as we find ourselves seeking reprieve from these volatile social, economic and culture storms, aren’t we better off if we do live in the moment?  Is setting long-term goals (especially around a career) really a viable option?  Isn’t it beneficial to our survival to be ready, at any given moment, to be able to adapt to any given thing?

Perhaps those whose brains are wired for living in the moment are better off than those whose brains are wired for long-term and stable environments.

This is all just theory of course… I’m talking out of my ass here… but really, is it such a crazy idea?

We have always labelled mental illness and developmental disorders like autism and ADHD as such because they prevent us from “normally” participating in a “normal” society… but perhaps in this tendency, we are dangerously connecting the inability to conform to stale old traditional modern paradigms with mental illness.

Imagine what a different world we would live in if we finally admitted and came to terms with the fact that Western society isn’t “normal”… it isn’t “natural” and it is in fact making us all crazy.

The next time someone uses the word Retarded to describe an individual with extreme in the moment processing capability, but who lacks the ability to conform to the myths of normal development and social etiquette… tell them that they are the retarded ones, for they are the ones who are developing for ages past… not for the future that we are hurtling towards…