Normal is a four letter word. Extraordinary is the new black.

Tuesday, July 31, 2012

Pulling clover...

We have been day tripping and following our bliss wherever possible for the last couple of weeks.  Today though, today was different.
It was a quieter sort of day.

Today, I decided to try to tend to the front garden. It gets attention twice a year, whether it needs it or not. While pulling weeds, I flashed back to sitting in the grass as a kid with my mom, sisters, and neighbour. We would just sit in the front yard and talk while we pulled out the clover. I remember learning that clover winds it's way through the grass with an intricate network of stems and that it was like a puzzle, tracing those stems back to the source.

Suddenly, it was all about the clover. Tracking the stems, and working back to the centre hub. The teenager came outside to offer help and quickly found his way down to the ground as well, learning clover removal techniques.
As we sat there, following the labyrinth, we talked. We talked about all those things that parents and kids should talk about. We talked about school, friends, girls and his plans for life.
He is growing so fast, and in his mind, he is ready to be grown. His dad and I find ourselves struggling with the balancing act that is allowing freedom, while still ensuring that he doesn't try to fast forward through childhood.
We are children for such a short time, and adults for so long.

As we were pulling and talking a neighbour walked past with her pup. She assessed our work and her first words were, "That's not going to help. You are going to pull that out and it's just going to all grow back."
Smiling, I told her that, "It's not the clover that matters."
Today, it was time spent with my little man that measured my success.
The front yard will just have to wait it's turn.

Wednesday, July 11, 2012

Of labels and walls...

Pssst! Hey! Over here. Can we talk?

So, this past week, a celebrity in the music world, made some crappy comments to a fan seemingly because the fan mouthed off to him. He told the fan that "he looked autistic" and then went on to say, "I don't want no special ed kids on my time line follow some body else."

Okay, so first off, I would just hate to be a publicist in this day and age. With all the ways for their clients to communicate via social media, I imagine many publicists have a permanent dent in their foreheads from the repetitive 'face-palms' they must do daily. 

Second, who says that? Really, are there actually people that think it's okay to say things like this? Wait, of course there are. See the thing is, that this isn't the first, nor will it be the last time that someone with a mass twitter/facebook/instagram following is going to misspeak. 
After all, regardless of your station in life, we are all human. We can recognize that at some point each of us has used our words to inadvertently or intentionally disparage others. So while I was frustrated and disappointed in the words I read, I could accept that the person speaking them made a mistake and needed to be educated. 

When this tweet was published, right out of the gate, Hollie Robinson Peete wrote an eloquent, well thought out, open letter to the offender. Over instagram and twitter, parents of autistic children sent him photos of their kids tagging #thisiswhatautismlookslike and #whatautismlookslike. I was one of those people. For the most part, this response was in the spirit of education and understanding. However, there was also a response of outrage and anger, which ironically echoed the outrage and anger that the tweet was born from. As the days wore on, with no public apology forthcoming, the anger that bubbled under the surface out of the gate started to rise and words like "thug" "ghetto" and "ignorant" became louder than educate, advocate, and communicate. Unfortunately, it was this anger that was heard and it was the anger, the "outrage" that was reported on. It seems the media has learned long ago, that their audience feeds on the negative aspects of a story first. Although lacking in spiritual nutrition, a headline like, "Parents outraged at 50 cent tweet" garners a lot more traffic than a headline that reads, "Parents of Autistic children patiently advocate for an apology." 

Yes, it sucks that medical diagnosis' are still used in derogatory ways, either as insults, or for laughs. It is discouraging that so many people don't seem to understand what autism truly is, and what it looks like both physically and in behaviour. It is frustrating that there seems to be a collective voice coming from the mainstream media that desires to compartmentalize and simplify what is a complex neurological condition. This misunderstanding only succeeds in further pandering and underestimating a population of truly exceptional human beings. Humans beings with gifts that often go unseen because a medical diagnosis, a label, meant to facilitate understanding, is twisted in a negatively slanted definition. It is this collective stereotype that feeds the miseducation of our population and breeds these derogatory slams.

It is all frustrating, and so the voices that start out patiently advocating get louder. These voices start getting angry, they start calling names. If the offence starts with labels being used derogatorily, how can it be resolved by continuing to use different labels derogatorily? An angry response not only serves to produce a knee-jerk apology from the offender, it also inflames a population of bystanders, polarizing the response down to those defending the offender and those defending the offended. 

With a delivered apology, the media has moved on from this story. Outrage, demanded satisfaction and got it. If we are to follow this lead, there is nothing more to discuss. However, I argue, it is the aftermath of feelings that we should all be talking about. The heavy focus on the initial offence blinds us from the lessons in the fall-out. When the story is dead, an autopsy on it is where the real learning begins, because this situation will happen time and time again. Some of the players will change, but the pattern is still there. The celebrity will eventually apologize, because, genuine or not, they have to. The world is watching. 

In the moment of misspoken quotes, the stakes are not the hearts and minds of those that misspeak. The stakes are the impressions left on the hearts and minds of the bystanders. The stakes are in teaching the bystanders how to respond for our children when we are no longer able to. 

If we yell instead of advocate, all that is heard is a collective noise, of anger. All that we teach is to respond with noise and anger. If we speak with kindness, and with a desire to educate; we can be heard. Perhaps, without 'outrage' we will not get that publicly demanded apology. However, when given the choice between an apology coerced by outrage, or an opportunity to educate a few more hearts and minds, I choose education. 

Mahatma Gandhi said, "Be the change you want to see in the world." The change I must be is the person that seeks to foster understanding and communication, one heart at a time, in the place where anger once spoke. I must teach that the purpose of a label is for understanding, and not for mudslinging or laughs. If we don't want a medical diagnosis to define our children, if we don't want a label to quantify their existence, then we ourselves must recognize that all labels, when used derogatorily are equally offensive. By defining a person based on their negative actions alone, we cease to find a solution to the problem and instead build a wall. 

As human beings, we all are complex, and name calling is beneath the dialog we should aspire to. 

I strive to 'be the change'. I strive to educate and advocate with patience and understanding. It might be exhausting to do it time and time again, but at one point I benefited from patient education.  

Maya Angelou said, "When you know better, you do better." As a parent of children with special needs, I do know better, and I must do better. 
In the battle for the hearts and minds of the bystanders, I have a lot of loud voices to drown out with my one little voice. I don't have a network behind me. I don't have a large social media following. However, if my little voice, joins the voices of several other patient, teaching, advocates, we can be heard.

Friday, July 6, 2012

Always learning....patience

This week one of our kids has come back to visit us. Six years ago, he lived here for a short time, but left a mark on our family. Six years ago, when we got the call about him needing a place to stay, the man on the other end was solemn. He explained that there was a young man from Japan coming and that he needed to tell us that he had cerebral palsy. He wanted to know if that caused a problem for us having him stay here.

The question stunned me. I asked, "Is there something I should be aware of? Do I need to make sure that my home is accessible? I don't understand why this is a problem." He alluded to the fact that we were not the first family he spoke to and I stopped him and said, "We would love to have him stay with us."

During his first visit, he was off at school learning a lot, but there was a little time to play. One night we went to a BBQ at our friends and played badminton. I will never forget watching Keisuke play. He moved like a butterfly chasing that birdie, but he stung like a bee when he kicked our butts, time and time again.

This week having him back we were so excited to catch up. He was excited as his English was so much better and we have had some really great talks. The other day, we got to talking about disabilities, and I thought we were going to have a conversation about appearances and assumptions, but once again, one of my kids taught me something.

I asked him about what it was like to have a visible disability, whether it was frustrating when people assumed that his mental abilities were affected as well. For Keisuke, motor control is a challenge. This affects his walk, his movements and his speech. On more than one occasion, I was witness to someone assuming that his cognitive abilities were equal to his motor abilities. Having a little man with an invisible disability, who has trouble with social and emotional regulation, I have been witness to someone struggle to understand why a seemingly normal looking child was behaving in a way that did not mesh with his physical appearance. Having another child with tourettes, I have also bore witness to misunderstanding and assumptions about what it is, and what it should look like.

However, Keisuke's answer surprised me and made me think. He explained that he came to North America to go to school because here, people with disabilities get help, and are schooled with their peers. He explained that at home, children with disabilities are schooled separately regardless of their abilities and are most often not socialized with their peers. He explained that because of this, many people in Japan do not get to learn about people with disabilities. There is no chance for fostering understanding, because there is no opportunity to misunderstand. He went on to tell me that he prefers it here, where he might be misunderstood at first, but he has the opportunity to educate others and learn for himself.

It is a truth though. We can get all up in arms about the things that people do or say when confronted by a disability. We can shut people down, or get touchy that people say the wrong thing. We can get indignant and frustrated and even angry. We can, but none of that opens communication. None of those responses advocate or educate. Keisuke, reminded me that patience in the face of misunderstanding, fosters understanding. He reminded me that as a mom to children with differences, I would rather someone say the wrong thing to me, and open a dialogue, than say nothing and remain in the dark.

So I choose patience in the face of misunderstanding. I recognize that I understand, because children born to me dictated that I must learn. I recognize that it is my job to patiently educate and advocate. I accept that anger and resentment, breeds disconnect and discord. I choose patience in the face of misunderstanding, because I hope that it means I raise my children to do the same, to approach the world with the same grace, courage and intelligence as this amazing young man has shown me.

Also, I must confess, I love that he still calls me mom.