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A Day In The Life

I am participating in the Health Activist Writers Month Challenge, in which I publish a post every day for the month of April, based on health-related prompts.

April 11 – Theme song: Imagine your health focus or blog is getting its own theme song. What would the lyrics be? What type of music would it be played to?

I confess that I had no idea what to do with this prompt. My writing skills do not extend to the lyrics of songs. That is my husband’s arena. Therefore, for today, I decided to use one of the bonus prompts:

Daily schedule: Write a list of your daily routine from the moment you wake up until the moment you go to bed. Be honest!

alarmclock

5:00  I wake up to the sound of the alarm on my phone. More often than not, I am on the futon in my living room with a small kid pressed up on either side of me (although it must be said that the small kids are getting less small by the day). Because I’m wedged in between my kids, I can’t simply grab my phone and throw it against the wall like I want to. It takes effort to extricate an arm. Often, as I’m reaching for the phone, I knock it off the table, and then I have to get out of bed – a supreme effort indeed – to pick it up and turn off the alarm.

5:15 I turn on my computer to check my email. I am dressed in my running clothes and I am waiting for the coffee to finish brewing. While I’m reading my emails my younger son wakes up. I get him a cup of milk and start preparing to leave, knowing that I will be delayed by my son’s constant chatter.

5:25  I kiss my older son goodbye. He is asleep, but he will know if I’ve left without kissing him goodbye. I field a gazillion questions from my younger son and eventually manage to escape. I sprint to the bus stop and make it with seconds to spare.

6:30  I arrive at work and head straight for the corporate gym in the bowels of the building. I dump my stuff in a locker, fill up my water bottle, and head out for a run. I’m still groggy and sleepy, but the first kilometre or so takes care of that.

8:00  I get to my desk, all showered and feeling good from my run. I drop my bag on my chair and go straight back out for coffee and a bite to eat. I bring it back to my desk and work until noon.

12:00 Lunch-time! I curse about having once again left my carefully prepared lunch in my fridge at home. I gather up my notebook computer, buy a random salad somewhere, and sit in the common room writing words.

12:30  Back to the grindstone.

2:45 Arrival of my mid-afternoon energy crash. I go out for coffee, and while I stand in the queue I stare at the display of donuts and cookies wondering if it would be OK for me to have one. By the time I get to the front of the line I’m so undecided that I don’t get anything except the coffee. Which is a good thing.

4:00  I pack up, log off, say my goodbyes to my co-workers and leave. I go to the subway station and position myself on the platform just where I think the train doors will end up. More chance of getting a seat that way.

5:30  I arrive home, lamenting the fact that once again, I did not get a seat on either the subway or the bus. I walk home from the bus stop, and stop to check the mailbox on the way home. I do so much stuff over the Internet these days that I hardly get any actual mail.

5:35  The husband and children, who get home before I do, have been standing at the living room window watching for my arrival. The husband opens the front door to release the kids, who run towards me in that joyous, unrestrained way that only children are capable of. I dump my bags, drop to my knees, and open my arms. My boys come hurtling into my arms and almost knock me backwards with the force of their love.  My cup overfloweth with happiness.

6:00 The kids were fed their dinner before I got home, and now the husband and I are cooking up something for ourselves. I enjoy the companionship as we chop vegetables together and chat about our days. I reflect on how fortunate I am to have a husband who supports me in my writing and my running, who accepts me for all of my weird little quirks, and who is the best dad ever.

7:00  Dinner has been cooked and eaten. I clean up the kitchen but don’t start the dishwasher – not yet. My older son, the one with autism, has a lot of angst where the dishwasher is concerned. I have only just gotten to the point where I can unpack and reload it without him completely melting down. Actually running it would be asking for trouble. Best to wait until he is asleep.

7:30  Bathtime for the kids. George goes in first, because he really doesn’t like being in a tubful of water. I soap him down and then, amid panicky cries of protest, I wash his hair. Like many autistics, he has a big problem with having his hair washed. James dives for cover, only emerging when George is safely out of the tub and in his pyjamas. James’ bath-time is a splash-fest. I have to keep a towel handy for myself, and I’m not even in the water.

8:30  The kids go to bed. George has done his homework (and got it right) in about three seconds flat. Bedtime milk has been consumed, stories have been read, hugs and kisses have been administered. I wait until George is asleep and then turn on the dishwasher. I make lunches for the following day and ensure that everyone has clean clothes to wear. I sit down at my computer and do whatever admin needs to be done.

9:30  My day’s work is done and now it’s time to reward myself. I pour a glass of wine, send my daily email to my mom, and waste time on Facebook. I complete and schedule any unfinished blog posts and start one or two new ones. Sometimes I abandon Facebook in favour of a nice soak in the tub. There’s something very decadent about sitting in a bubble bath with a book and a glass of wine.

10:00 I have a cup of tea with the husband and sigh dramatically as he channel-surfs. Why do men do this? Just as I’m getting into whatever happens to be on the channel gets changed.

10:30  I suddenly remember some crucial email or piece of admin that absolutely cannot wait until the following day. I turn on my laptop again to take care of it.

11:00 I fall into bed in a state of exhaustion, and fall into a fitful sleep that will, at least once, be interrupted by one of the kids needing something. Sometimes, I wake up to find one of them beside me. And I’m completely fine with that.

(Photo credit: http://www.flickr.com/photos/szift/3196084839. This photo has a creative commons attribution license.)

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Autism Through A Child’s Eyes

I am participating in the Health Activist Writers Month Challenge, in which I publish a post every day for the month of April, based on health-related prompts.

April 8 – Best conversation I had this week: Try writing script-style (or with dialogue) today to recap an awesome conversation you had this week.

I’m not much of a person for conversations. I suffer from social anxiety, so talking is difficult. I tend to be more comfortable finding my voice in the form of the written word.

Obviously, this is less of a problem when I am among friends and family. I am married to a man who, in addition to having a totally off-the-wall sense of humour, has no “inside voice”. The conversations I have with him range from the baffling to the downright hilarious.

I also have some great conversations with my younger son, James. For a six-year-old, his vocabulary is astounding, and his imagination knows no bounds. He weaves in and out of topics at will, and you can never tell where the conversation will go next. One moment he seems to be wise beyond his years; the next, we are reminded that he is still a kid finding his way in this world.

A few days ago, we had this conversation while I was cooking dinner:

James: Mommy, can you buy me a water gun?
Me: Why do you want a water gun?
James: So I can spray Granny on the nose.
Me (after snarfing on my coffee): Why do you want to do that?
James: Because her nose is dry and that means she’s sick. Roger (a classmate) said so.
Me: Roger said that Granny is sick if her nose is dry?
James (looking at me as if I’m nuts): No. He was talking about his dog.
Me: Ummmm, James? Dogs and people aren’t the same. Granny’s nose is fine.
James: I think Roger’s dog has autism.
Me: What makes you think that?
James: He doesn’t talk and he knocks down Roger’s Lego towers. It’s not his fault, though. He doesn’t know what he’s doing because he has autism.
Me: James, that’s just the way dogs are. Dogs don’t have autism.
James: How do you know?
Me: Ermmmmm (thinking: the kid has a point)
James: Mommy?
Me (wondering about James’ sudden sombreness): Yes, buddy?
James: Will George always have autism?
Me: Yes, baby, he will. Autism is not something he can grow out of.

I want to pause this account briefly to say that where autism discussions with James are concerned, I find that honesty is the best policy. I don’t try to sugar-coat anything, and I answer questions without elaboration. This approach seems to be the one that works best with James.

James: That’s OK. I love him.
Me: I know you do. And he loves you too.
James: Yeah! Mommy?
Me: Yes?
James: Will George die from autism?
Me: No, people cannot die from autism. We just have to make sure we keep him safe.
James: It’s OK, Mommy. I’ll take care of him.

Yes, I cried.

(Photo credit: Kirsten Doyle)

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Time In A Bubble

I am participating in the Health Activist Writers Month Challenge, in which I publish a post every day for the month of April, based on health-related prompts.

April 1 – Health Time Capsule: Pretend you’re making a time capsule of you and your health focus that won’t be opened until 2112. What’s in it? What would people think of it when they found it?

timecapsule

Sometimes, usually when I’m reminiscing about one of my grandparents, I wonder what the world was like a hundred years ago. In 1912, my maternal grandmother was nine years old. Cars were just starting to change the way people lived, and people were starting to realize that planes might be more than just a passing fad.

In 1912, the Republic of China was formed and the Titanic sank. Gene Kelly and Pope John Paul I were born, and the members of the Scott expedition to the South Pole died.

One hundred years ago, telephone communications happened over a party line and computers had not even been dreamed up. There was no such thing as a TV dinner. Indeed, there was no such thing as a TV.

It is very clear that the world was a completely different place back then. If you were to take my nine-year-old grandmother from that time and plunk her down in the middle of 2012, she wouldn’t have a clue what to do.

Now I cast my mind to the future, to the year 2112. What thoughts will the people then have about the way the world is today? What would I want them to think? What would I, the 42-year-old me who lives in 2012, want them to know about me and my life?

Maybe I should put together a time capsule, something that some random stranger can dig up a hundred years from now to get a glimpse into my life and the things that are important to me.

There would be photos, of course, a visual record of me and my family. Maybe a flash drive of family videos that the finder could watch – assuming, of course, that flash drive technology isn’t totally redundant by then.

I would include a pair of running shoes, and maybe one of my half-marathon finisher’s medals. I would print out a copy of my training plan, so whoever found the time capsule would know that I took my running seriously and tried to be healthy about it. They would know that I cared enough about my feet to use orthotics, that I ramped up my training in a way to avoid injury, and that running was my biggest stress-relieving tool.

There would, of course, be a lot of stuff about autism. A copy of George’s developmental assessment report and the autism awareness magnet that’s on my car. I would put in a copy of the very first “real” picture that George drew depicting a recognizable scene from a TV show. I would have to include one of George’s Mr. Potato Heads, along with a description of how this little character helped George’s development in so many ways. And what about a program from the biannual autism symposium? I could include one of my fundraising appeal letters for my autism runs.

Out of respect for my younger son, I would include a book about raising a child who is the sibling of a child with autism. I would throw in some of James’ artwork depicting him and George, and a leaflet about the autism centre’s sibling support program. I would want whoever found this to know that George’s autism didn’t only affect George, that we also had to make special consideration for his little brother.

And because James is an individual in his own right, I would include some stuff that’s just about him. A Lightning McQueen car. His soccer shoes. One of the T-shirts my mom has sent him from South Africa, that he always loves wearing.

Mental health is a big issue in my life. I would include some of the antidepressants I took a few years ago before the side effects scared me into stopping. I would print off some stats and information about post-partum depression – something that I suffered terribly from and that I still don’t think there’s enough awareness of. And maybe, just for fun, I would include one of my therapists’ bills. Whoever finds it can then gasp in astonishment and say, “Wow, they only paid that for therapy in 2012?”

Family is an important element in my life as well. My family, by their mere presence, enhance my physical and mental health. My husband’s support of my endeavours has an unquestionable affect on my stress levels and sense of wellbeing. So I would have to include a copy of my marriage certificate.

This time capsule is starting to get kind of full, and I haven’t even touched on some people in my life who would have to be represented, like my mom and my brother, and my best friend Jenny, and some other folks who form the fabric of my life.

I’m off to find a bigger box.

(Photo credit: http://www.flickr.com/photos/carbonnyc/2563369930/. This picture has a creative commons attribution license.)

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Home Is Where The Hat Is

I cannot say for sure when my firstborn son decided that he had to wear a hat at all times. Looking back at old pictures, it seems apparent that he spent most of his toddlerhood in a hatless state. I don’t remember him ever being resistant to wearing a hat, although from the get-go he was picky about the style of hat that he would allow onto his head.

All I know is that at some point – I’m pretty sure it was during one summer or another, the hat became a permanent fixture. It wasn’t even a gradual progression, like his preference for insistence on striped shirts was. It was an overnight thing. One day, he could take his hat or leave it. The next day, it had to go everywhere with him, even into the bathtub. Even to bed. The absence of the hat became an instant source of extreme distress for him. Taking it away from him would make him scream as if the world was ending. One day, when we forcibly removed the hat to throw it into the washing machine, a complete stranger called us from New Zealand and said that the noise had woken him from his slumber, and had we just removed our child’s kidney?

OK, I made that last bit up, but you get the picture. George will defend to the very last his right to have his hat with him no matter what.

On the surface of it, this may not seem like a big problem, but it is amazing how the full-time presence of a hat can encroach on real life. And so we had to work with George’s teachers and therapists to wean him from the hat, or at least get him to the point where he could do without it for brief periods of time.

Several years later, George is still into the hat. Whenever he outgrows a hat, my mother sends a bigger one from South Africa. We do have hats in Canada, of course, but the ones provided by my mom are so cool, so she is in charge of upgrading the hats.

We are able to persuade him to remove the hat at certain times. At bathtime it comes off his head, and remains out of his reach but always in a place where he can see it. When he is at school, he takes it off and hangs it on the hook in his cubby, only putting it on for lunch and recess. And at bedtime, the hat sleeps on the pillow beside him. To our eternal relief, he now consents (with just a little bit of protest) to having his hat taken  away for the purpose of being washed.

Although he takes it off when he absolutely has to, George still loves his hat and he always has to know where it is.

So if you’re ever in my neighbourhood and come across a shy, sweet boy who doesn’t say much and wears a striped shirt and a hat from Africa, chances are that you’re looking at my beautiful son.

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When I Grow Up: Six-Year-Old Musings

When I was a little girl, I wanted to be an air stewardess. I was a very well-traveled kid, and every time I boarded a plane I envied the slim, pretty ladies in their smart uniforms. They were always so elegant and friendly, and they were unfailingly kind to me and my brother. A career of jet-setting around the world meeting all kinds of people greatly appealed to me.

Of course, now that I am a well-traveled adult, I cannot think of a job I would like less. When I board planes, I want to be given my mini-bottle of wine and left alone. The last thing I want to do is walk up and down a narrow aisle handing out peanuts and smiling at strangers until my face hurts.

Anyway, when James was about three, he started having his first When-I-grow-up-I-want-to-be discussions. I clearly remember the day it started. Our walk to the daycare he attended at the time took us past a little restaurant that happens to be a popular breakfast spot for the local police. As usual, all of the parking spaces in front of the restaurant were occupied by police cruisers. James stopped to count them, and then said, “When I grow up, I want to ride in the back of a police car.”

Well! That wasn’t what I was expecting to hear! No parent wants to know that their three-year-old aspires to a life of crime.

Fortunately, he met a cool policeman a short while later and changed his goal to driving the police car.

Since then, James has changed his career aspirations several times. He has considered being a fireman, a race car driver and a builder. Sometimes his sole ambition is to be a dad – hopefully not too soon. Other times he wants to be a Transformer, but he doesn’t say exactly how he will become a thing that’s sometimes a car, sometimes a scary robot.

It doesn’t bother me unduly that James is so undecided about what he wants to do. I mean, the kid is six. He has time to decide.

This weekend, he suddenly came up with a new career idea. The conversation we had went something like this:

James: Mommy, we’re going to have a party.
Me: Oh?
James: Yeah! We’re going to bake a cake and put out some snacks and juice. But the cake will take longer to do so we have to get started on that right away. So I’ll find the juice and Daddy can go and buy snacks while you and George start looking for ingredients.
Me: Silence. Goldfish-impersonation. Thinking: cripes, this kid is bossy!

After a pause, the conversation continued.

James: Mommy, I know what I want to be when I grow up.
Me: Oh good! What’s that?
James: I’m going to be a caterer, and I’m going to tell everyone what to do.

So, he’ll be a caterer. Other than that, nothing much will change, since he tells everyone what to do now.

At the end of the day, I have the same hope for both of my boys: that they will find careers that will make them feel fulfilled and happy, and that they will not ever feel limited into doing something that they do not really want to do.

What career aspirations have your kids told you about? Did you end up doing anything remotely close to what you thought you would as a kid?

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The Birth Of Brotherhood

On the evening of Christmas Eve 2005, my husband and I lay on our bed with our son George between us. Then a little more than two years old, George was doing his usual pre-bedtime rolling around with Mommy and Daddy. It had been a nightly ritual from the day he was born. He would lie quietly with us while he drank his bedtime milk, and then he would spend ten minutes climbing onto my husband and then falling off in fits of giggles. It was a time that we treasured, but on this particular evening, I was feeling undertones of melancholy. My body was telling me that my second child would be born the following day. Which meant that this ritual was about to come to an end – or at least, dramatically change. In an odd way, I had already started feeling nostalgic for George’s only-child days.

It’s not to say that I wasn’t happy about the pending arrival. I couldn’t wait for this addition to my family. I was excited about bringing home a baby brother or sister for George, even though it would be a bit of a surprise for him to suddenly have an entire other human being in the house. Throughout my pregnancy, he hadn’t shown any signs of understanding what was going on, other than that he wasn’t allowed to jump on Mommy’s very large belly.

The baby did indeed arrive the following day, Christmas Day 2005. Having languished in his floaty home for a week past his due date, he was now very eager to get out and start living. I spent James’ first two days of life in a haze of exhaustion. When I had time to think, it was to wonder how George’s introduction to his new sibling would go.

As it happened, James started crying while we were driving him home for the first time. He wanted to be nursed, yet again. All about the boob, that one was. When we got him home, I settled down on the couch with him to nurse while my husband retrieved George from my mother-in-law. When George came bounding into the room to jump on the couch, I told my husband not to stop him. George stopped short at the sight of this tiny being attached to me, but although he was clearly surprised, he did not seem to mind the being’s presence. He didn’t say anything about it, but George was saying next to nothing at that time anyway.

For the first few weeks, George seemed a little bemused by James. I had the impression that he did not really see James as a person, but as an extra thing lying around the house. This was illustrated to me perfectly one day when James was lying on his back on the floor. We had one of those big foam alphabetic floor puzzles, and James was lying on that – in the exact spot where George wanted to play. George very matter-of-factly went up to James and took one tiny ankle in each hand. He then proceeded to drag James off the floor puzzle and onto the carpet. He was not rough or aggressive about it. He was merely moving something from Point A to Point B while I cracked up laughing. James didn’t seem to mind being displaced in this way. He just kind of looked at George with an air of resignation.

I will never forget the day I saw a shift happen in George – a shift from indifference to genuine brotherly affection. I had just changed James’ diaper and he was lying in the middle of my bed. George came in from wherever he had been and grabbed James’ leg as he was climbing onto the bed. James gurgled and waved an arm in response to being touched, and George stopped and stared at him, as if realizing for the first time that there was a person in there. His facial expression changed from one of curiosity to one of absolute tenderness. He reached forward, and with both arms, he reached out, lifted the baby and drew him close in a protective embrace.

It was the first time George spontaneously hugged James.

In that moment, I felt that my two sons truly became brothers.

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Bullying: Is There A Solution?

In the wake of Monday’s tragic school shooting in Chardon, Ohio, I find myself wondering why we as a society have so much trouble dealing with the problem of bullying. I asked this question on Facebook on Monday night, and more than one person accused me of blaming the victims.

I want to make it clear: I am not blaming the victims, nor am I condoning these acts of violence. I am merely making the point that in spite of the fact that bullying has been blamed for a number of tragedies over the last fifteen years or so, we have made little progress in addressing it.

It would be unfair for me to say that nothing has happened. I would be willing to bet that there were no formal anti-bullying policies in place when I was in high school. That at least has changed: it took me about fifteen seconds on Google to find my local school board’s policy. This does represent a start, even though the wording of the policy is frustratingly vague. It places the onus on schools to figure out ways in which bullying incidents can be reported and dealt with. When I called my son’s school to find out what their school-specific policy is, I got an expected but highly unsatisfactory answer: It depends on the circumstances. I also got the platitudes that schools think are sufficient for parents: We do not tolerate bullying in our school. We take this issue very seriously. Instigators of bullying are dealt with severely.

That’s all great, but what does it actually mean? We don’t need policies that are there primarily to make parents happy enough to sit down and shut up. We need action plans that are followed through on. Here are a few things that I would like to see in place:

  • Education sessions for parents that will teach them to recognize (a) that their child is being bullied, or (b) that their child is bullying.
  • Anti-bullying education in the curriculum for the kids. Right from the get-go, children need to be taught what their rights are and how they can ensure that they are being respected. They should also learn about what behaviours constitute bullying. While this is more intuitive for most older kids, young children may not recognize the potential harm of certain behaviours.
  • Support for the victims of bullying. They should have a way to report their experiences without fear of reprisal, and they should be assured that action will be taken. The onus should not be on them to “stand up to the bullies”.
  • Support for the instigators of bullying. These kids could have something going on in their lives that’s making them do what they do. They shouldn’t just be suspended from school and given a warning not to do it again. Steps should be taken to find out why they are doing it in the first place and what help can be provided to them.
  • Open lines of communication between students, teachers and parents. Teachers and parents should be working together to ensure the safety and wellbeing of our kids, and our kids have to know that there is someone for them to go to when they need help.

Bullying is not a problem that can be solved by letting the kids sort it out. We cannot tell one person to stop doing something, or another person to retaliate. Bullying is a social problem that can only be solved by everyone involved working together in a constructive way, to do what is best for the kids.

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10 Useful Skills For Autism Parents

Autism parents frequently have to do things that other parents don’t. Our kids are so different, what with their limited communication skills, their sensory challenges, and at times, their superhuman physical strength. It is impossible to parent a child with autism in the same way you would parent a typical child (which means that when you have both an autie and a typical child you have to adopt two different parenting styles, but that’s another post for another day).

In the beginning, it’s hard, knowing what to do. And in a way, it never really gets any easier. But there are things I have learned from experience, that are now second nature. Here are ten of my favourites.

  1. Drywall repair. Many auties, my son included, are headbangers. They may bang their heads out of anger or frustration, or simply to get attention. And then they bang their heads, they don’t mess around. They give the wall a good solid WHUMP that’s enough to make the room shake. The drywall invariably takes some punishment. The inside of my house looks a bit like a pitted golf ball, and there are places where the impact of my son’s head has caused actual holes – big, gaping holes.
  2. Mixed Martial Arts. My husband likes to watch Ultimate Fighter on TV, and although I don’t watch it myself, I have absorbed some of it through osmosis. This has proved invaluable in times when my son has had a meltdown. When most kids have meltdowns, they simply lose their tempers. When auties have meltdowns, they thrash on the floor, bash their heads on the closest hard surface, and can risk hurting themselves quite badly. Even as they are kicking and screaming, they have to be kept safe. Hence the MMA skills. I have become quite the expert at using my bodyweight to restrain my son from hurting himself. The difference between me and the Ultimate Fighter guys, of course, is that I try to avoid causing pain, I don’t get paid big money for my efforts, and I have a mental age that’s higher than my shoe size.
  3. Dishwasher Racing. My son hates – and I mean hates – for the dishwasher to be open. Anytime I have to unload it and repack it, I have to deal with this kid repeatedly – and with increasing volume – telling me to close the dishwasher. He plants his bum on the kitchen floor, right in front of the sink, so I cannot get to the dishes. Sometimes I actually have to slide him out of the way. I have taken to setting the oven timer whenever I start doing dishwasher stuff, and the idea that he can visually see how long it will take does seem to soothe him. But God help me if the dishwasher is not packed, closed and switched on by the time the timer expires.
  4. Stealth Hair Cutting. My son, like many other kids, dislikes haircuts. But he doesn’t dislike haircuts in the same way most other kids dislike haircuts. He dislikes haircuts in the same way most people dislike having a kidney forcibly removed while fully conscious and able to feel pain. Rather than risk traumatizing my child, I give him haircuts while he is sleeping. This involves a lot of patience, as I have to wait until he is very asleep. If he’s not asleep enough, he will wake up as soon as I touch his hair and he will scream loudly enough to startle the llamas in Peru. I have to creep around in the dark like a burglar, and sometimes it takes several nights to get the job done.
  5. Mediation. OK, this is a skill that any parent with more than one child has to learn. But when one child has autism and the other doesn’t, you have to raise your mediation skills to a whole new level. It’s a bit like trying to sort out a dispute between one person who only speaks Zulu and another person who only speaks Icelandic, when you only speak Pig Latin.
  6. Jumping Through Hoops Of Fire That Are Constantly Moving. OK, that may be a slight exaggeration. But dealing with school boards can really feel that way when special needs concerns are brought into the mix. I am getting really good at making suggestions to teachers and therapists that are phrased in a way that makes it sound like it was their idea. If it gets what my son needs, I really don’t care who gets the credit for it.
  7. Improv. If I had a dollar for every time a random stranger made a stupid remark about my son needing “a good hiding” or “proper discipline”, I’d have enough for a five-star trip to New Zealand, including flights, hotels, meals, and a Lord Of The Rings tour. I have learned the art of the Quick Comeback. If someone is being rude and intrusive while my son is having a hard time, I am no longer shy about saying things like, “My child has autism – what’s your excuse?”
  8. Distraction. This is a concept that most autism parents are well aware of. Sometimes I can just tell that a meltdown is just around the corner, and I want to do everything in my power to head it off at the pass. I get favoured activities or treats within arms’ reach, try to stop or somehow control whatever is winding him up, talk to him, sing to him, throw out mental arithmetic problems at him (the kid’s like Baby Rain Man with numbers – what can I say?) I have about fifty-fifty success with my efforts – but I will take that over ninety-ten in favour of the meltdown.
  9. Planning for Change. If there’s one word that makes autism parents everywhere tremble with fear, it’s change. Our kids don’t do well with change. They like the same places, the same people, the same routines. When we go on vacations, we have to take most of our family’s belongings with us so that we can replicate our home environment as closely as possible. Every summer, we put together social stories in preparation for the new school year, that include pictures of the new teacher and classroom, and we take our son to the school so he can get used to – or stay used to – playing in the playground there. I contingency-planned my wedding like it was going out of style – and all of those efforts paid off.
  10. Appreciating the Little Things. Where an autism parent is concerned, there is no such thing as a small accomplishment. All achievements, ranging from new words added to the vocabulary to giant cognitive leaps, are causes for celebration. As the parent of a child with autism, I have really learned how to smell the roses. Life is full of challenges for me and my family. But every single day is a blessing, and every single night, when I kiss my children goodnight, I am grateful for the people they are. And no matter how hard the day has been, I feel like the richest person on the planet.
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Autistic Is Better Than Dead: Guest Post by Sara Morgan

Two years ago, my husband’s cousin lost his 20-year-old son to cancer. At the funeral, I kept myself together reasonably well until I saw the friends of the deceased enter the church. I remember thinking that this – the loss of a friend – is not something that any college student should have to deal with. And later, in the cemetery, I saw the bereaved mother standing there bravely, clutching the teddy-bear her son had had as a child. The overriding thought in my mind as I watched a mother and father burying their child was, “Thank God all my child has is autism.”

Today’s post, from Sara Morgan, expresses the same sentiment. Sara and I have two things in common: we are both autism parents, and we are both moms of angel babies who never got to live. In this heartfelt post, Sara reminds us that where there is life, there is hope.

As a mom of a child with Autism ( and one Highly suspected of having Aspergers, but that’s it’s own rant) I seem to get a lot pity, or compassion, or…I’m not always sure what to call it…. thrown at me.Like I’m some sort of saint for not thowing my child in the dumpster because of his Autism. I’m not brave, or special really in any sort of way except that I’ve come to the conclusion that Autistic is better than Dead.

When people see me walking on the street they see me and my 3 children,Faith, Alexia & Gabriel. What they do not see is the 3 I carry in my heart. Angel, Devan & Jeremiah….who would have been Gabriel’s twin. Pregnancy loss has long been a taboo subject, and I have fought hard to keep thier memories alive…how they died doesn’t matter near as much as that they once LIVED. That they will continue to live on in our hearts and our memories, that I will share them with thier siblings, even Gabriel with his autism and his limited understanding will know someone was in there with you….and he has a name, and a place in this family as do all his siblings.

Autism can really be it’s own depresing journey, it has it’s own grieving process, just as losing a child does…..It has the ups, the downs. The times you just want to throw yourself on the floor right along with your child and scream “WHY ME?” At the end of the day I can hold myself together because in the long run, he’s still HERE……I can do Autism…..Autism is Better than DEAD any day of the week….we can work with this! Autism will always be a debilitating condition,My son will always stuggle….but there is nothing more debilitating…more final…than the death of your child, anything else has possibilities.

I have Grown so much since I started these journeys, both as a bereaved mother, and as an autism mom. Don’t look at me with pity, Heck don’t even look at me with pride because I’m doing exactly what anyone in my position would do….I’m picking up the pieces and trying to put them back together and move on the best I can…and that my friends is all any of us can do.

(Photo credit: Sara Morgan)

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2011 – My Year In A Nutshell

January 2011

I start off the year on a good note. Tired and slightly hungover, I take part in the Resolution Run on New Years Day. With my wedding just four months away, I start to stress about the little details, like where to get married and where to hold the reception.

This month, I also donate blood for the first time  – at least, the first successful time. My inspiration is baby David, affectionately known as Captain Snuggles. Sadly, David dies just days later, at just 8 months old.

 

February 2011

We have a wedding venue and a minister! I will be getting married in the same church where both of my children were baptized into the Christian cult fellowship. My running has slowed down a little, because the stress of wedding planning has made me sick.

March 2011

We have a venue for our wedding reception! We almost booked the first place we looked at, but then we went to see the hall at the Royal Canadian Legion. They initially had the hall booked for our wedding day, but the other people have graciously agreed to move their event to the previous weekend. This means two things. First, we get to have our reception in a place that supports the veterans. And second, we now have all of the information we need to send out our wedding invitations.

This month is frantically busy. We have left most of our wedding planning to the last minute, so we have to book our DJ, our flowers, get a cake sorted, find someone to do my hair and makeup, and so much more.

April 2011

My wedding is on the last day of this month! Most things are organized, but my hairdresser and my makeup person have both bailed on me. While I dissolve into tears, my fiancé gets into the car and goes out for a drive. When he comes back, he tells me that the hair and makeup problem is all sorted out.

My soon-to-be brother-in-law introduces me to a wonderful lady, who agrees to be in charge of both of my boys for the day of the wedding. This is a very big deal for me. I worry about how my son with autism will cope with such a big day.

The big day arrives, and it goes perfectly! My hair and makeup look lovely, and the dress – made by my mother-in-law – is perfect. I marry the man I love, and everyone has a lovely time, including the kids.

May 2011

I spend time with my Mom, who has come for the wedding. We go shopping, we go for drives, we spend time with the kids, we chat and drink wine. It’s wonderful to have her with me.

One of the lowest lows of the year happens this month, with the unexpected death of our friend Ken, just days after our wedding. It is an honour to have had Ken and his wife at the wedding. It is good that we got to see him one last time. He will always be missed.

June 2011

My younger son James graduates from Kindergarten. I have a surreal kind of feeling as I watch my baby up there on stage, wearing his construction paper graduation cap, receiving his Kindergarten diploma. When he and his classmates start singing their songs, I just about die from the cuteness.

 

July 2011

I am having difficulty with my running. I struggle to find time, I am lacking motivation, and I am injured. I have missed the last two races I was registered for. On the plus side, the sporadic nature of my recent training does not appear to have affected my speed. There has not been any improvement in my performance, but there hasn’t been a noticeable decline either. This may not seem like a big deal, but when you’re struggling with something you usually love, you have to take what you can get.

August 2011

2011-08-25 11.19.19This month turns out to be unexpectedly busy. The big news is that my older son George graduates from his provincially funded autism intervention program. He has had two years of IBI followed by a year of the school stream program. His progress has been off the charts. He is ready for this graduation. I, on the other hand, am not. It represents a growing-up that I am just not ready for.

Things seem to be looking up with my running! I run two races this month, just a couple of weeks apart. My performance in the first isn’t great, but in the second, I do a lot better than expected.

September 2011

George turns 8, and I’m not really sure how this has happened. It seems like just yesterday that I held my tiny baby in my arms for the first time, and now he’s this long lanky boy who keeps growing out of his shoes.

My 2011 Run for Autism is three weeks away. I run a 10km race at the zoo and make a personal best time. The following morning, I go out for a long run in foul weather, and the day after that, I can barely walk. I feel good, though. I feel ready for the half-marathon.

October 2011

75738-1975-025f[1]The day has finally arrived: the race I have been training for all year. This is the reason I run – to raise funds for autism services, to make the world a better place for children and youth with autism and their families. I dedicate this race to my son George: my joy and my inspiration. If he can live every day with the challenges of autism, I can run a two-hour race.

It goes really, really well. I get a personal best time for the half-marathon and beat the 2:20:00 target that I’ve set for myself. What makes this day even more amazing is that I have done really well with my fundraising for this race, surpassing my combined total for the previous two years.

November 2011

I am insanely busy at work. I am on four projects, and I am also in charge of the month-end reporting for all of the projects in my department’s portfolio. I am enjoying the additional challenge that this gives me, and every month I am getting better at it.

I feel like I am starting to gain some traction in my writing. It is hard work, building up a blog following, and it’s an ongoing process. I am becoming quite prolific, though. I have my blog, I write for an ezine, I write for a project called World Moms Blog, that is growing very fast. I have been voted as one of the top 25 Canadian mom blogs, and people are starting to ask me to guest post for them. I have also resurrected the novel I started working on a couple of years ago.

I run another race at the end of the month, and demolish my previous personal best time. If I can do this after the difficult season I’ve had, what will I be capable of if I actually train? I ask my running friend Phaedra to be my coach for next year, and she agrees.

December 2011

As usual, my Christmas preparations are a last-minute frantic rush. Somehow, I get my shopping done on time and the day is a big success. We all weather the festive season with life and limb intact. It is a hard time for George, with all of the sounds and lights and people and busy-ness, but he gets through it.

On Christmas Day, James turns six. I feel a little weepy over the fact that my baby is no longer a baby. There is just something about the transition from 5 to 6.

Also on Christmas Day, I somehow manage to pinch a nerve in my back. It’s eerily reminiscent of 2 years ago, when the same thing happened. The incident in 2009 puts me out of action for two months, and I really hope this does not happen again.

The story continues in 2012. What script will I write for my life in the coming year?