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.

Happy Charter Day, Canada

It isn’t written on any calendar I can find, but I very much want to call April 17 Charter Day.

On this day in 1982, Queen Elizabeth II and the Prime Minister of Canada, Pierre Trudeau, sat at a table on Parliament Hill in Ottawa and signed two documents transferring all Canadian constitutional matters to Canadians. For a country that has prided itself on just getting the job done and being a little bland, it was a wonderfully fitting moment to finally gain full nationhood. It was like finally paying off the mortgage. For something involving Trudeau, it didn’t even seem to be too ostentatious other than it was outside in April in Ottawa, which isn’t the most pleasant place to be outdoors most April days.

It may seem odd to hear someone say they are proud of that moment. The constitutions that are most often written about like the American or French were borne of blood and sacrifice.

Canada’s written constitution does share a lot in common with those more famous, violently created documents. It was written by a bunch of affluent, middle-aged or senior white guys, most of whom were lawyers.

It also carried with it the aspirations of a people.

In Canada, when the constitutional process and document were being negotiated, memories of the Quebec referendum were very, very fresh. There was still a separatist Parti Quebecois government in the second most populous province in Canada.

We had tried in the early 70′s to modernize our parliamentary democracy and the relationships between the federal government and the provinces. At that time, the scars of a terrorist group in Quebec and the imposition of martial law during the October Crisis were oretty raw.

None of this seems like anything to be proud of.

The birth of Canada with things like the Charlottetown conference was, to be honest, a pretty dull thing. It certainly lacked the thrill of Daniel Shays’ Rebellion powering the Americans to negotiate their constitution in 1787.

In secondary school we learned about the relevant (translated as dull) constitutional milestones along the way: Proclamation of 1763, Upper & Lower Canada, the Rebellions of 1837, Lord Durham’s Report, the Northwest Rebellion, Canadians fighting under their own general in World War l, the conscription crisis, the Persons Case, the Statute of Westminster, Mackenzie King declaring war on Germany in 1939 a full week after Great Britain did. Throw in King-Byng and Rowell-Sirois for good measure. Oh, let’s not forget Newfoundland joining Confederation in 1949.

All very heady stuff when you consider that until 1982, the highest level of judicial challenges were made to the UK. Same thing if the provinces and the federal government couldn’t agree to changing the enumerated powers in the Constitution Act of 1867.

Many things were left off the table by the time that Her Maj and Pierre signed the papers 30 years ago. Quebec refused to sign on and still does. That is disturbing. There have been 2 rounds of constitutional negotiations since that April day and a national referendum to fix a variety of problems that people thought needed fixing. There have been some bilateral agreements to change things like separate school systems in some provinces, but the document and country are still intact.

Why would anyone be proud of what sounds like a tedious, undramatic process that resulted in some paper?

For me, I was never more proud to be a Canadian because 30 years ago we accomplished two wonderful things. First, Canadians were finally in charge of our country. When reminded time and again during the 70′s sitting in class, I found it humiliating that we as a nation were not found capable of making the final decision on matters solely Canadian. I am sure the British recognized the bizarre situation of nations decolonizing in Asia and Africa but Canada could never get the courage up to just ask for independence

An important part of getting complete control of our constitution and law-making abilities is the second reason I have never been more proud to be a Canadian: the Charter of Rights and Freedoms.

Many people leading up to the patriation of the constitution were opposed to the Charter. Some people, like my father, thought it would make us more like Americans. To him that was code for the excesses of the individual trumping the community. Others believed it would lead to a weakened parliamentary system, meaning that governments could do nothing.

On that latter point, many people have viewed a litany of court challenges as tying the hands of duly elected governments and led to the rise of the courts which blunt the will of the people.

I see it very differently.

Charter challenges, as we often call them in Canada, are about individuals telling governments that they aren’t living up to the promise of democracy. I see the courts as being the only long-lasting remedy to ensure that our rights are not being taken away by governments.

There are many people who think that the Charter has become a way of letting criminals go free, but those people aren’t thinking about the flipside of that coin; that we do not want the innocent to go to jail. We are not that far removed in this country from the Japanese being sent to concentration camps and having their homes taken by the state during wartime. Nor is the forced sterilization of people thought to be inferior perpetrated by Alberta that far behind us. Truth be told, the memory of martial law in Quebec is still clear  enough for some.

Many Canadians will point to the “notwithstanding clause” as a way for Canadian governments to get around the courts if they become too activist. Some see it as a threat while some see it as way for parliament to retain its primacy. Notwithstanding allows a government to pass laws that effectively ignore a court decision on a matter. Outside of Quebec where the “notwithstanding clause” was incorporated into every piece of legislation for a while, pretty much to tweak the nose of the federal government, politicians have been loathe to use it. Even those most opposed to judicial freedom seem not to want to start down that road.

In what seems like a typically Canadian way, we have found a bureaucratic and bland way to ensure our rights are respected by governments.

Bland it may be, but for some of us the simple fact of having our own constitution and an enumeration of what we expect governments to protect makes us proud to be Canadians.

The Magic of March Break

As a kid, March Break had this magical quality. In those days, back when most of us lived close enough to walk to school and if we had a tv it was more likely to be black and white, it seemed like few people went away for the week.

There was always snow that week. Sometimes we would sneak onto a nearby car lot where the snow had been plowed to make a huge mountain where we would carve out a fort, oblivious to whether the dealership had adequate liability insurance. We played road hockey all day. In my case, I played road hockey very, very badly. There were some programs at the public library that I vaguely recall attending. Mostly, though, I remember the magic of just hanging out with the other kids in our neighbourhood.

Now, safely ensconced in adulthood, the biggest deal about March break for some years has been how light the traffic is for that week.

That is, unless it is a kid week.

This year was the second year of alternating March breaks with the twins. I was able to get an extra weekend with my son. His IBI is about an hour drive out of town and is normally 3 days a week. The extra weekend with just the two of us meant a lot to me. Because his IBI allows kids to take off some time during March breaks, he went in 2 days and that meant some one-to-one time with his twin sister.

What magical stuff did we do?

We hung out.

The beautiful weather we were blessed with meant we didn’t have to go sneaking around to build snow forts. We didn’t even need to find misplaced snow pants. Heck, we didn’t even need to find jackets most days.

A highlight with Daniel has to be working on his requests. Daniel has a lovely soft voice, a little high pitched much of the time. We spent last weekend adding “I want” when he requested something. “Pizza please” became “I want pizza, please.” That is a huge transformation. He almost brought me to tears when he said “I want bedtime, please” and “I want 3 more, please,” meaning he wanted me to sing 3 more lullabies. I was even more amazed with his quick progress when he started requesting at item and adding a colour. While playing with a blue ball, he asked for the white ball.

Rachel said her highlight was going to the children’s museum in Kitchener, cleverly branded as The Museum. When I asked her what was favourite, she answered everything, of course. She spent a large amount of time at the water table, using barriers to damn up or change the course and speed of the water flow. She was very pleased to say that there wasn’t too much “museum stuff.” I think she meant art or glass-encased displays. My faves at The Museum were the bed of nails and tweeting with @THEMUSEUM in real time about the displays.

My youngest engineer at the water table.

The biggest highlight for me: time.

Learning Phonics

We parents of autistic kids love our tablets, be they iPads, Androids or TouchPads. Admittedly, I am in the minority of tablet parents with a TouchPad. Regardless, parents love tablets and the worlds that are now open to our kids.

Not that long ago–in fact, less than a year ago–most people would have described my son as non-verbal. In fact, I told everyone who would listen that he was. To be able to not just hear his voice these days, but also to hear him say words I can recognize, is very magical and makes me misty-eyed more often than I admit.

Daniel’s speech, much like his writing, just seemed to start cascading out. In a very short period of time he wanted to say words. With a lot of support from his EA, SK teacher, his twin sister and both parents, we all coaxed words from Daniel.

After he started IBI last fall, the therapy staff were able to work more intensively with him and help his mother and I with supporting his speech development.

Here is where the tablets come in. Daniel loves watching Youtube on the TouchPad, but he calls it an iPad because that’s what his mom has. I am very brand loyal to HP and Sony, but I realize I have lost the battle on nomenclature when it comes to the TouchPad.

When Daniel is here and asks for the tablet, he methodically works through his list of faves.  He starts with BINGO. Always. Most of the songs either come from Super Simple Songs or KidsTV123.

Something new started a couple of weekends ago. It wasn’t a deviation from his patterns or  an addition to his playlist. It was using one of the songs to teach his old man.

Sitting at lunch, Daniel started saying the letters of the alphabet, but he would leave a long pause after saying each one and point to me. It took me a few minutes to realize what he was doing. He was waiting for me to say the word associated with the letter from one of his favourite videos, The Phonics Song 2.

I could have smacked my forehead because it was so obvious, but I didn’t. I tried to remember the words. When he said “g” I was lost. I couldn’t remember the word. He prompted me a bit and then said the word. Between my, umm, limited hearing and Daniel’s  pronunciation, I couldn’t make it out.

Rather than stay on “g” until I clued in, Daniel moved to the next letter and gave me a huge smile when I said the right word. It was just like I would do, or his therapists and teachers would do, when he successfully completed a task. I laughed inside when I recognized he was teaching me. I missed “r” and “v” and he responded the same way as with “g.”

His sister was trying to coach me, too, but I couldn’t get the words.

It was only after the twins went back to their mother’s and I viewed the video that I understood what the words were.

Whenever anyone asks, I say that my kids are my best teachers. With Daniel’s phonics/alphabet lesson, it turned out to be a very literal thing.

Hand Dryers and Autism

I love the Dyson Airblade. I think a hand dryer in a public washroom that can dry my hands as quickly and completely as an Airblade is one sign that we live in the best of all possible times.

I own a Dyson vacuum cleaner and I think it is quite possibly the most wonderful thing I have ever bought. When I first heard about the Airblade, I knew it was going to make me hate any hand dryer I  had used before even more. The Airblade was going to be hand dryer bliss.

With the Airblade it really was love at first sight. I should have been creeped out by watching my skin blown around like the cheeks of an astronaut in a centrifuge. Instead, I just loved it more.

Since first using an Airblade, I have noticed electric hand dryers have generally improved and become much more common in public washrooms and that poses a bit of a problem.

I understand why more and more public washrooms are being equipped with them and paper towels dispensers are not being refilled.

First, it must be cheaper than buying all those paper towels and paying for space to store them. Then there’s the cost of paying staff to restock the washrooms and empty trash. Fewer tasks to pay someone to do. I don’t even want to think about how often staff have to mop up after some (insert favourite bad name here) has decided to clog a toilet with paper towels.

I have to imagine that hand dryers have been improved to use less electricity, which must make them cheaper to use. They certainly seem to be more reliable than when I was a kid.

They may even save trees or allow for more generations of use from recycled paper product, so I can ease my conscience at the use of electricity generated by coal, oil, natural gas or uranium.

These seem like perfectly good reasons to try embrace hand dryers; that is, unless you have a child with sensory processing challenges or a child who does not adapt well to changes in their environments or routines.

That description could fit many children, including my son.

We are currently working hard to get Daniel toilet-trained. Between 2 homes, his IBI provider and school, there are a number of things that are being replicated to make it easier to find a routine that will make him successful in 4 different locations.

In the past month and a half Daniel’s toilet-training schedule is a visit to the bathroom every 30 minutes. There are books in the bathroom in our house to encourage him to sit longer. When he is done sitting, he pushes the flush button, turns on the tap, uses a hand pump soap dispenser and then dries his hands on a towel. At IBI and school, there is a wall-mounted soap dispenser and paper towels and the toilet has a handle.

Every Saturday that the twins are with me, we go to the mall downtown for french fries, then to the public library and farmer’s market.

We’ve been going to the library since the twins were infants, so going every Saturday is a well-established routine. The library had to be reconfigured a bit when renovations were being done a couple of years but we could still use the library. It wasn’t a huge adjustment because they did a great job of setting up the children’s area. I was really looking forward to when the work would be completed.

When the construction was done, the transformation was stunning. I worried a bit that it might be a challenge for Daniel, but it didn’t take long to get used to the very different and modern look. His interest most of the time immediately following the re-opening seemed to be with the conveyor belt taking returned items to the basement.

He did well with the changes, until it came time to use the washroom every half hour.

He had been exposed to the new library washroom before, but only because the 3 of us would go in there together if Rachel needed to use it. He knew there was a hand dryer and would sometimes play with it by putting his hand under it to get it started over and over again.

Rachel really disliked how loud it was and in fact doesn’t like to use electric hand dryers at all. We’ve come up with the work around of using toilet paper to dry her hands.

It’s not just that Daniel has to adjust to using electric hand dryers in public washrooms with no paper towel to reinforce what he is using at school and therapy. No, in the family washroom at the library he uses a toilet that has a sensor that flushes whenever he moves and a tap that has a sensor to allow water to pour out whenever he puts his hands in the right spot. He doesn’t always find the right spot. In fact, more often than not he doesn’t find it. The water only runs for a few seconds and I am happy to know that the public library isn’t wasting precious water, but it doesn’t exactly reinforce the routine at the moment. In some public washrooms he also has to contend with getting his hand in the precise position for soap to pop out of the dispenser. After the washing comes, cringingly, the electric hand dryer.

I know that all these things are probably reducing costs and waste and those are great things to do.

I think I better start packing a towel, though.

Gluten-free Sundays

Some ideas take a long time to form. The image of the lightbulb going off when a person gets an idea never seems to convey how many times Edison ran his experiments or how many other people were working on electrical lighting who didn’t succeed.

I am not claiming that I have had any ideas that would put any genius or dogged inventors to shame. That lightbulb moment takes a long time is all.

After many years of not doing anything about gluten-free diet options, it finally hit me while I was grocery shopping with the twins; I headed down the aisle with gluten-free flours and mixes. I bravely walked up to the pancake mixes and selected one to use for Sunday breakfast.

Making a hot Sunday morning breakfast for the kids has been a big deal for a long time. It seemed like a good way to make a new routine with my oldest daughter and it has continued for the last dozen years.

Some Sunday mornings would involve 3 different combinations. The two girls wanted chocolate chips, my son would want plain if he ate them and the twin’s mother would want blueberries.

When we bought a house to share with my sister that added one more person to the Sunday breakfast mix. The complication is that my sister would have to bring her own breakfast because she lives with celiac disease. My normal batters were of bounds.

When it became apparent that Daniel was autistic, as part of the research I did, I kept running across the stories of parents who had experimented with gluten-free diets and saw some amazing results. The problem for me is that there was so little supporting research of any value on this.

That means that gluten-free was not going to be a reasonable choice for Daniel.

Yet, in December it finally struck me that gluten-free pancakes and waffles was a brilliant idea. Not for Daniel, but for all of us. I could finally make a hot breakfast for all of us. Now the only thing I have to think about on Sunday mornings is do I have all of the possible toppings.

TouchPad Moment

I had such great ideas about being a TouchPad evangelist when HP announced it was making a tablet similar to the iPad. Sure, the TouchPad was similar to the iPad 1 when it arrived, but I knew it was going to be a big help for Daniel, just as the iPad had been of great assistance to many autistic kids.

That was all before the TouchPad became the second best selling tablet of 2011 when the plug was pulled on it and developers had no good reason to migrate their apps or make new apps for the TouchPad.

I’ve written before about how the TouchPad can play an important role in development for kids on the spectrum.

This morning I finally had everything in place to make a little video of Daniel and Rachel using it for Youtube, which has become Daniel’s preferred used for the TouchPad. I keep working with him on using some of the great Oceanhouse Media books for webOS, but he prefer his Youtube now.

So…what can parents do with a TouchPad?

Here is a little video that shows some turn-taking.

Remembrance Day and the Legion Back Home

Both my father and grandfather were farmers and soldiers.

They were born into farming when it was much more likely for Canadians to be born on the farm. It may be tough for many people in Canada to recall a time when people farmed because they spent their lives on the land where they were born. Much of what we see of farming these days are corporate farms or hobbyists who farm after their higher paying jobs allowed them to take it up. The concept of families who pass the land and the farm down from one generation to another is increasingly rare.

I don’t know how far back soldiering goes in my family but it was a connection my father and grandfather might not have had but for the two world wars. Both men volunteered to fight. Both men went straight from the farm and joined up. Neither had been to a large city before signing up, nor had they been on a ship or left Ontario, let alone left Canada or been to Europe.

Both started at the bottom as privates and became corporals. Corporal is only one step above private, but at some point some set of circumstances occurred that moved both my father and grandfather up to that rank, which means they had some responsibility for their men.

I never had the opportunity to talk to my grandfather about his experiences, but when I was able to ask my father he didn’t talk much about it. He most commonly would say “there was a job to do and someone had to do it” or “the Germans were just like us and they had a job to do, too.”

My grandfather was part of the 600,000 strong Canadian Expeditionary Force. My father was part of the small 1st Canadian Parachute Battalion.

In the final years of my father’s life I found out a few more details about his service, most of that knowledge coming as we cleaned out his apartment in preparation for him to move into a retirement home for veterans. I was astonished when he was going through his war records and he produced his army paybook. He proudly read out to me “Parachutist with pay” which appeared in the small book. There were indeed columns with initials confirming that he received pay. I asked if that meant that some guys weren’t paid. If I was dumbfounded at the notion of soldiers not getting paid, I think he was even more surprised that I didn’t know that there were paratroops who were convicts and therefore not entitled to pay or guys who received no money for other reasons.

After his war, my grandfather went back to the farm. My father made the choice to move to a bigger city and became a truck driver, but he went back to the farm often. He helped his father bring in the hay every year and made weekend trips back home. We often went there in the summer and frequent weekend trips in the spring and fall. Among all the amazing things about the farm for me was the lack of electricity and indoor plumbing and this was the case even in the late 70′s when the farm was sold following my grandfather’s death.

Although I hated the drive which seemed to last forever and I was car sick a lot, it was pretty cool to know that here was a place in the world that never changed. It was one of the few constants in my life. Over the years though, it went from being the whole family who would go to just my Dad and me.

A funny feature of these trips involved the Legion. I recall two locations for the Legion. The first was a brick building, which at some point in my childhood was vacated for something resembling a Quonset hut at a different spot in town. Every Saturday afternoon, Dad and I would drive us from the farm to the Legion and he would play euchre. Kids were not allowed in, so I would sit in the car and read. If I got hungry or thirsty, I would honk the horn and Dad would bring out a sandwich and coke.

This ritual went on for years. Dad got to play cards with people he grew up with and I got to read. It was a pretty sweet arrangement, except for one thing: I always wanted to see what it looked like inside. The Legion took on an air of mystery to me. One time I tried to get in by going to the door and saying that my Dad hadn’t heard me honking. I had a small peek and heard his displeasure about me trying to get into this sacred place. I could not know then that the Legion held another mystery for me if I ever gained access to the building.

When my father passed away, the Legion had a wonderful memorial service for him. I was finally inside the Legion and it was a little overwhelming. Not having belonged to the armed forces or the Mounties, I never expected to be allowed to enter the building, although the rules about membership have changed to allow kids of veterans and other relatives to join.

Before the memorial, the leader of the branch explained that Dad was a charter member, but the words didn’t have any impact on me until we walked in through the front door. There on the wall at the entrance was a board listing the men who signed the charter for the branch and how much they had each raised. Remembering my Dad at the time that the branch was founded was a truck driver and it was just a couple years after the war, the biggest mystery about the Legion was now staring me in the face. The cost of starting the branch was $10,000 and my father raised three quarters of that. If going to war was just something that needed to be done and someone had to do it, then getting a Legion branch back home was another job that needed doing.

“Back home,” along with the Legion, is a more of a mystical concept for me than a location, although they both represent a place in my youth. Whenever I hear the term “back home” it means my father’s and grandfather’s little village, not the medium-size city I grew up in. This little speck on the map that is no longer even a town, but part of a larger one, is pretty fixed in mind at certain size. The last time population sign I remember seeing showed 600 people living in that town. Checking online, I see that it is now over 900. Before the First World War there had to be far fewer people living there.

Yet every Remembrance Day there is a long list read of men who served and died between 1914 and 1918 from that small town. In fact, one of Canada’s Victoria Cross recipients in World War One, Wallace Lloyd Algie, came from this tiny place.

At my father’s memorial service, the sitting Member of Parliament and member of the government, David Tilson spoke, as did a representative for John Tory who was the MPP at the time and the Mayor of Caledon, Marolyn Morrison. Since that memorial, I have tried to attend every Remembrance Day ceremony, which is held the Sunday before November 11th. Every year, members representing the levels of government all show up. This past Sunday, at the Legion named in honour of Lt. Algie and supported by my father, the public representatives, Mr. Tilson, Sylvia Jones the MPP who succeeded Mr. Tory and Mrs. Morrison, were in attendance again to lay wreathes. In addition, officials from regional council, fire department, OPP, Scouts and others laid their wreathes at the cenotaph.

After the service, I spoke to a couple of the politicians and the conversation turned as if often does to numbers. The list of those who died during the First World War as mentioned is long. This year about 120-150 people watched the Remembrance Day ceremony and the political leaders acknowledge how much support the Legion has every year to commemorate those who have served as well as those who have fallen.

The men who left the farm almost 100 years ago or again after 1939 or to fight in Korea didn’t have to go. Why they did may be a mystery to many of us when so few of us these days would even consider that choice. For me, there is no mystery about why so many people connected to this little town show up on Remembrance Day. The past will always be alive when I go back home.

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.

Bedtime Stories

A sleeping baby, like a kitten playing with a ball of wool, is one of those scenes that can make even the most hard-hearted among us smile. After a hard day for a parent, a child falling asleep can bring a little peace and relaxation for us even as we need to prepare for the next day or finish off some work we need to do before our own bedtimes.

My twins have very different bedtime routines and very different sleep habits. I started thinking about this during a meeting earlier this week when my daughter called me at her bedtime and after reading the latest post from smallbutkindamighty about Sleeping Strategies.

For a long time, both twins slept together in the same room. That came to an end when Daniel wouldn’t stay in his own crib. With my older daughter moving to a bedroom in the attic, it was possible for Rachel and Daniel to each have a bedroom. For many months following that separation, Daniel would usually take between 1 to 2 hours to fall asleep in his room. Often he would wake up in the middle of the night to play some.

Daniel’s bedtime now involves melatonin to get him to sleep. As smallbutkindamighty makes clear in her post, a large percentage of autistic kids experience sleep problems. Every parent trains their kids to sleep in a pattern that works for families, but asd kids often need more intervention to establish sleep patterns. Many parents in this situation make the choice like I did to use melatonin. For me, it was important that Daniel get to sleep and also important that the rest of us get sleep.

I am very aware that some of the issues about his sleep problems will still need to be addressed down the road.

I should point out that Daniel’s mother has very different experiences with him going to sleep and staying asleep. He very rarely wakes up during the night here. I thought before the kids and their mom moved it was traffic sounds in their neighbourhood that woke him up at night. Although they are now in a very rural setting, he still experiences frequent night awakenings and so the differences remain a mystery.

At bedtime for both twins for years I have sung a lullaby with the number of times I sing it increasing over the years. It’s been stable at 5 times for at least the couple of years.

That is identical for both Rachel and Daniel. So is what I say after that when I give them kisses and hugs and leave the room.

Rachel will often find ways to extend the bedtime routine after the songs. The latest addition has been to ask me to wind up a music box snow globe with a penguin inside. I had hidden the snow globe away for years fearing that it might get broken, but it has become a good way of measuring how long it takes Rachel to go to sleep. Usually I just have to wind it up completely once and she is asleep shortly after it stops. Often she is asleep before it runs down and that is about 4 minutes.

Since the move the bedtime ritual when they aren’t with me has changed a fair bit. Daniel doesn’t speak on the phone or listen very much and he is usually asleep when my commute is done.

Rachel goes to bed quite a while after Daniel, though, so talking to her at bedtime is able to continue. After the move, phone calls with Rachel were usually about how sad she was about the move. Standard, yet still very sad to hear.

One night she needed to call a couple of times and during one of them she asked me to sing our lullaby. Of course, she needed me to sing it 5 times. And after that we went back and forth with “I love you,” “sleep tight” and “dream big.”

That has been going on for about 3 months now. At about 8 o’clock every night that she isn’t here, I sing. The routine has become that Rachel will call, we’ll catch up a bit on her day and that seems to involve talking about the kitten, Squeak, quite a lot lately. Then she’ll ask for 5 songs. Sometimes she’ll lose count or sometimes she’ll insert silly words, but it is 5 songs, just like when she is here and just like our routine has been for such a long time.

Since this new routine has started, we haven’t missed many nights. Sometimes Rachel has fallen asleep early or I have been in a workshop or driving. Earlier this week, during that meeting I mentioned, I excused myself to sing 5 times. Other times, I find myself in places where I don’t think people expect to hear someone singing lullabies.

If anyone is listening in, they could also hear our 3-2-1 countdown which has become our way of cutting down on how long Rachel would stay on the phone to hear and say “I love you.”

Sleep routines are almost as important as the sleep itself.

Incidentally, the lullaby is from a movie that I watched often with my now-17 year old daughter and sang to her at bedtime:

http://www.youtube.com/watch?v=pExCByqi0NU