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…