Those of you who've been around for awhile know my oldest sister, Jennifer is developmentally delayed. I peg her overall maturity to be that of an 8 year old. In addition to her mental challenges, she also suffers from anxiety and depression. She has been on and off medication to treat these chemical imbalances since 1997.
It's funny how strangers and friends, with no idea what it's been like to live with Jennifer, freely offer opinions about her overall care. My parents are constantly defending their decision to have her live with them full time, and fielding questions about what will happen to her when they are gone. What about myself and my two other sisters? What will happen to us when they are gone?
These questions are cruel, insensitive and hurtful. I can appreciate they come from a place of concern, but I have my doubts sometimes, because I know, after witnessing a really bad Jennifer meltdown, these same people thank whatever God they worship that their children aren't like Jennifer. Let's be frank. They're happy they don't have to deal with it, and because they feel they couldn't deal with it, there's this assumption my parents shouldn't have to deal with it. Well they do, but we all appreciate the concern.
If you're familiar with the movie Rainman, you'll understand the difficulty people like Dustin Hoffman's character, Ray, have with "transitioning". Meaning, we can't do this now, so we have to do something else. Or, this show has been cancelled, so let's go home.
Stubborn and defiant, people like my sister, Jennifer, react badly to these situations and can be difficult to control. You might as well be trying to reason with a grapefruit.
Jennifer can be aggressive if she's frustrated because she refuses to believe there isn't a way to fix what happened. It's incredibly draining and exhausting to deal with these situations.
So why did I write all this? Only to try to give people a better understanding about these situations and as a preamble to what happened last Thursday.
A CSA was not assaulted. Let's get that part straight. Another passenger was assaulted but only because he intervened in a nasty altercation between a man like my sister and his Personal Support Worker (PSW). The man and his PSW were traveling on the Lakeshore East to attend a group session the man goes to every Thursday like clockwork. My sister does the same on Saturday nights. When it became clear that the overall delay to the 4:07 PM train meant he would miss his group session, he became agitated and frustrated and lashed out at his PSW. His PSW attempted to restrain him as he was upset the train was not moving and demanding someone make the "man" move it. Another passenger, familiar with people like the man, stepped in and was accidentally kicked in the "baggage" area.
It sounds ugly. I can promise you it probably was ugly. I have too many stories of similar situations with my sister and I can't bring myself to share them. But when there have been times where the public has assisted, and not often with good intentions, these people then scold my parents (or me) for not having my sister in a group home, or in an institution, or for just being out in public with her. Hurtful stuff really. I feel for my mom the most in these situations. She's put up with a lot. She was incredibly strong when we were younger but now that I'm a mom myself, and dealing with a child with her own issues (Asutism Spectrum Disorder) my mom calls me and cries. Mostly out of frustration. Sometimes out of humiliation. And often out of desperation.
Be kind. That's all I ask.
12 comments:
Sadly many people are ignorant. I don't believe the comments are deliberately mean spirited - it's just ignorance.
I've worked with people with mental issues, including autistic kiddies, during my time as an RN. I felt so much more compassion for these folks than some moaning minnie with a 3" appendicectomy scar.
"Ooh nurse, please help"
'Oh bugger off' (I thought this, never said it ;) )
And yet they'd get more sympathy and understanding than the bloke bashing his head against the wall 3 wards down.
Last night a poor lady was banging on the garage doors along my laneway, shouting: "I need to see Chris Brown!"
I felt sad that there was no mental crisis number to call (we called the cops on the non-emergency number but really, what are 2 lumps in bullet proof vests going to do?)
This quote sums it up nicely: "Stupidity has a certain charm - ignorance does not" Frank Zappa
@ Anon:
There isn't a Mental Crisis number, but there are Distress Centres (https://www.torontodistresscentre.com/). The people on the other end are trained to deal with many situations and they are there to listen. Because sometimes you just need to talk. They are also trained to assess a situation and to call EMS if there is a need. I know all this because I was one of the volunteers on the end of the phone for about a year. Then it got to me and for my own mental health, left.
It's a difficult situation all around. I feel for anyone dealing with this or any other similar situation.
@Squiggles - I was a Toronto Distress Centre volunteer for a while, many moons ago. I wouldn't say it "got" to me; more than I disagreed with the supervisors taking me to task for spending too long on the phone with a young man who had AIDS and had been told he didn't have much longer to live. That said, I highly recommend (and have) this - or any similar service - to anyone who needs someone who will just listen without imposing opinion or advice.
What I needed was a number I could call to get someone to go out and calm the woman down. Someone other than the cops (we all know how well they deescalate anxious citizens). Is there such a service?
It didn't help that the non-emergency number took about 10 minutes to answer (the lady was long gone).
Really, we do these folks a disservice. It shouldn't be down to 911 and some lumpy grunt with a high school diploma to deal with.
@Nora:
Nice! and yes, I have mentioned it to people. As well, my work place does offer similar services, which I used and have recommended to co-workers.
It did get to me, but there were other things going on: my cat was dying, bought my first house, the 6am Sunday shifts, etc. Had things not compounded, I probably would have stayed longer.
You know I've been visiting your site for awhile but I couldn't be struck by the difference in your take on how your sister or this man behaves in public compared to how regular people behave in public. So if I am understanding this, when your sister acts out or does something appropriate, no one is allowed an opinion -- a negative opinion -- just like how you feel about foot riders, bag riders and people who use the train as their "ensuite washroom"?
I don't understand what you're trying to understand?
My sister has manners. She's not an entitled idiot. She rides the TTC everyday to her workshop without incident. She's been taught what to do when there is a delay (although payphones are getting harder and harder to find). I'm pretty sure my sister does not pluck her eyebrows, put her feet on the seats or bag ride. She may be "retarded" but she's not rude.
The meltdowns come from a bad place. The trigger has to be pretty substantial. Even I have physically dragged my own sister out of public spaces because I am very aware, painfully aware, of the disturbance and distress others feel it's become.
What do you think I'm doing wrong here?
@RH Person - I'm looking forward to your response to CJ. Are you saying you can't tell the difference between a numbnut footrider and a person in mental distress?
Nothing yet. Can't wait.
It's much easier to "criticize & run" than to engage in what could become an intelligent/meaningful discussion where one might be proven to be wrong, it seems....
The actual problem is that we live in highly-populated societies where everybody is, more or less, forced into each others' spaces on a regular basis.
There just isn't any way possible to accommodate each individual person's special needs or to make amends for their idiosyncracies or for unusual circumstances/situations.
I have a young son (5) with autism and I completely understand. One thing that makes it harder is that it's an invisible disability - looking at him you'd never know he has autism. People look at me and my son during a meltdown and I know what they are thinking because I've heard it more than once while out with him..."control your kid", "he needs discipline", "isn't he a little old for a temper tantrum". People are ignorant and judgemental need to learn to mind their own business. Unless I'm asking for your help or opinion...butt out and nobody will get hurt and chances are I'm able to diffuse and settle the situation within minutes.
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