Birthdays no longer celebrated

So far in 2012 a couple of friends have laid one of their parents to rest. One lost a mother and one lost a father. Last year, a couple of high school friends lost their mothers.

Having already said my final goodbyes to both of parents in the last half dozen years, I can appreciate and understand the road ahead for them holds many unexpected milestones where grief and sadness take hold.

One of those milestones for me is my father’s birthday, which is today. It always feels odd to me to hear that we are celebrating someone’s birthday after they are dead or to say that they would have been x years olds today. I don’t have an easy way of reconciling the fact that it feels strange to say birthday for a deceased person and yet to remember it every year.

I have discovered that it is far easier to remember the date of my father’s birthday than it is to remember the day he passed away.

That could be due in part to the rush of emotions in witnessing his final days. It could be that we had twins at home who were less than a year old and it was one of many things emotional things going on.

I prefer to think that it is about acknowledging the day when all of his promise was ahead of him, rather than his last day when his promises had all been fulfilled.

Mike and the Mechanics did a beautiful song in the 80’s about the loss of a father, called “The Living Years.” Toward the end of the song is a stanza that even then made me a little teary-eyed.

I think I caught his spirit

Later that same year

I’m sure I heard his echo

In my baby’s new born tears

(Written by Mike Rutherford, Brian Alexander Robinson, Lyrics Copyrighted by EMI Music Publishing, BUG Music)

This may sound maudlin, but I see my father in my son. In his face and in his countenance, I see my dad.

As a kid, despite the physical and emotional distance between my father and me, I believed my dad could do anything and solve any problem. He could build anything. I did a science fair project on nuclear fusion reactors and I had a vision of what I wanted to do. I needed a model of a tokamak reactor. I gave my dad some pictures of what one looked like and some sketches of what I wanted. He also offered to build my display.

When he was done, I just about cried. I didn’t cry because that just wasn’t done in front of my father, but the memory still brings a tear to my eye.

The reactor model wasn’t just perfect; it was breathtaking. The display was amazing. What started out as masonite pegboard became a stark and impressive backdrop for the posters and pictures. My father my never had said “I love you,” but that day I had no more doubts that he did.

That project earned me a job in a lab which was my first job not as a paper boy or working in a factory. My father’s wishes for me were fulfilled with that model.

Dad, having grown up a farmer, been a soldier and spent years on the road, was very frugal with his words. Having a son who needs intensive work to develop his speech makes the two seem all the more similar to me. Both voices offer so much when I am patient to hear.

I see so much more than a physical likeness between my son and father. I see the intellect that is often hidden. I see amazing and creative problem solving skills. I see a love that comes through actions not words.

I admire them both for the struggles that they are presented with and the dignity that they demonstrate in meeting them.

They are also very human and sometimes fall back, but they work so hard to try again.

My father and my son are such remarkable role models for me, even on the days when I miss them most.

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Language of being autistic

Many, many, many years ago when I was in first year university, I took a linguistics course. Although I only took that one introductory course, it was easily my favourite and most challenging class. Not challenging because I didn’t do well, but challenging because it was new and thrilling. It forced me to think about some of my basic assumptions about things I had taken for granted.

One part of the course was about semantics and of course Noam Chomsky’s work figured prominently. Reading about his views and those of others on the topic has left me with one very important piece of knowledge: when someone says “it’s just semantics” to dismiss an argument they don’t have a clue what semantics is about.

Here is how wikipedia defines it: Linguistic semantics is the study of meaning that is used by humans to express themselves through language.

It’s just semantics becomes it’s just about the meaning which is clearly not what a large chunk of people think they mean.

We use words because, like all elements of communication, we agree they have a meaning. We may not agree that words mean the same to every speaker of a given language, but we can agree that words are used to convey meaning.

As the parent of children who have been diagnosed with an autism spectrum disorder I know that several words or terms are used to describe our kids. There is a lot of energy spent debating autistic vs. living with autism and autism vs. autism spectrum disorder.

I tend to use autistic most of the time. I have been told by one other parent of an asd kid that it is wrong to use the word “autistic.” I listened to her arguments, but I still say autistic.

I understand a lot of the reasons why some want to use “people first” language, but I accept that they apply to autism.

Recently, I have read some good posts supporting using autistic. This one by @ejwillingham led to a bit of tweeting on the weekend. Here’s the compelling part of her blog post to me:

Autism has been medicalized to the point that parents of autistic children find that anything but person-first language is offensive. Autism has been medicalized to the point that autistic people can read and hear words used to describe them that include “tragic,” “stolen,” “monster,” and “afflicted.” It has been medicalized to the point that when autistic people themselves choose to use the word “Autistic” as a noun, the response from non-autistics is almost one of sheer horror.

For most of my career as a fundraiser, I’ve worked with organizations connected to HIV/AIDS. If anything has made me aware of “person first” it is working in that context. The struggles of HIV/AIDS weren’t just about gaining recognition of the disease, how it was spread, who it affected and overcoming indifference/hostility. The struggles were also about language. We use “living with” because the person is not the disease or the disease does not define all that a person is. For the same reasons we refer less often as someone with diabetes as diabetic or more often we talk about someone who has overcome cancer as a survivor.

Autism is very different. Autism does affect how a person communicates with the world, views the world and interacts with others. Despite what some people may think, I don’t share the view that autism can be cured, so I don’t subscribe to using the language of diseases.

My oldest calls herself an aspie. The last time we spoke about using the word autistic, I think she called the argument dumb.

Similarly, I see many posts from people who are autistic who argue for using that word. I have yet to read one where someone on the spectrum prefers to say they are “living with autism.”

Autism is a very different diagnosis from cancer or some other disease. Many people on the spectrum use autistic to demonstrate that difference.

The difference to me is summed up when I say that people live with cats, they don’t live with autism. “Living with” is often about choice. No one chooses to live with autism.

All of my kids are very special to me and each is different. An important part of their uniqueness is that two are autistic and one is not. I would not try to deny their identity by suggesting they are just “living with” something, whether that is autism or neurotypical. In fact, cleansing the language denies an important part of their being.

And that is just semantics.

What is wrong with just being a parent?

Blogging for me is part chronicling some of the memorable or amazing steps in the lives of my kids, part remembering and part thinking out loud. Anyone who has spent a few minutes in conversation knows how funny and irritating that last part can be.

Sometimes my thinking out loud can even be useful.

This is one of those times that I suspect it will be mostly irritating.

With that warning out of the way, I want to rush headlong into thinking out loud about one of the things that I find divisive about the autism communities.

Not vaccines or cures, but I do have thoughts on those. Not about autistic vs living with autism either.

No, it’s about calling ourselves advocates.

My thought is that the job of parenting implies that we are going to advocate for our kids on the spectrum or our kids with special needs or our just-plain-no-modifier kids. However, being an advocate does not necessarily imply being a parent.

Maybe it’s that I am old enough to have parents that lived through the Depression or maybe it’s that my parents were of a dour flavour of protestant or maybe that my mother was a single mom in the 1960’s and ’70’s when it was less common–or maybe not of that matters.

What I know for certain is that as an advocate I would have to call myself unsuccessful. I have not had any influence whatsoever on reducing wait times for therapy, getting more funding for services or moving a single bureaucratic structure to move any faster than it wanted to. Nor have I been able to motivate media or policy makers.

I understand that people want to use the term “advocate” and some people have been very successful at caring for their kids and moving the yardstick for people seeking progress for autistic kids. Stuart Duncan and Shannon Rosa jump to mind as two great examples.

Last week when I read one of Stuart’s posts and he wrote about the toll that being an advocate was taking, my heart was aching for him. The bar was already set so high for him to just be a parent and then higher still that his family is living with autism and I admire him for both of those roles. Stuart is so much more than just an advocate because he is a parent.

To restate, as an advocate I would have to count myself as a failure in influencing the thought leaders and budget makers.

As a parent, though, I have been a little more successful. I have had a lot more smiles than I ever did when part of my paying work included being an advocate. I have seen all of my children do amazing things and accomplish wonderful feats, not because I was an advocate but because I am content that my best job title is parent.