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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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.