Let Go Of The Guilt For Mothers Day

13 May

I am participating in the 2012 Wordcount Blogathon, which means one post every day for the month of May.

I have a tendency to take on too much. In this regard I am very much like most moms. Whether it’s genetic wiring or just a normal part of motherhood, trying to do everything for everybody is just what we do.

From time to time, we get challenged on this by well-meaning people who say things like, “You have so much on your plate. You really need to learn how to say no.”

Yeah, like that’s going to happen. We can’t possibly say no, because, you know, we’re doing it for the children. All of the late nights, and the hours spent doing laundry, and the long commutes to full-time jobs – we do it all for the children.

While this is perfectly legitimate most of the time, there are times when we use the “for the children” line simply because we cannot process the idea that it’s OK to actually do something for ourselves once in a while.

For instance, when people ask me why I run, I tell them that it’s for my son, to raise funds for autism. It is true that this is what got me back into running after a long break, and it is also true that it helps a great deal with my motivation. But let’s be honest – there are other ways to raise funds for autism that don’t involve entire Sunday mornings spent running instead of with my family. When it comes down to it, I run because it makes me happy , but I’m darned if I’ll actually say that out loud.

My husband has this computer game that he plays most evenings. It’s one of those war games where tanks blow up other tanks – a guy game that I, as a woman, don’t really get. He says he plays this game to unwind and release some stress, and I completely understand that. He works hard and he does have a lot of stress to deal with. It’s perfectly reasonable that he would need an outlet. But when I play my computer games at the end of a long, stressful day, it is under the cloak of intense guilt. I feel that the time I’m spending actually enjoying myself should instead be spent doing something for somebody else.

I know I’m not alone in this. I ran an informal poll on my social media feeds asking fellow moms for their views. Here’s some of what they had to say:

Kerry says that she feels guilty when she does things for herself or buys herself anything. “Can’t get a hair cut, the child needs one first. Can’t buy a new pair of shoes. Too much guilt!”

Tammy had a one-word answer to the question of whether she feels the guilt: “YYYYEEESSSSSSSS”

Hollie poignantly said she doesn’t feel the guilt, “because it’s very rare that I do anything for myself.” This is in a similar vein to Ruth, who says that she doesn’t feel guilty as such, but she’s simply lost the hang of doing things for herself.

Sara, a single mom of special needs kids who really needs a break, reports that she recently considered canceling a vacation so she could buy a car seat for her child, who doesn’t even need it yet. And Nicole said that the few times she doesn’t feel guilty, she starts to feel guilty about not feeling guilty!

I wonder why that is, just why we moms are able to turn guilt into even more of an art form than the Catholics. I mean, we are fully prepared to acknowledge when other people, like our husbands, deserve a break. Why can’t we do the same for ourselves?

If we got just a little bit better at slowing down once in a while, and unashamedly doing stuff we enjoy simply because we enjoy it, maybe we would feel less overwhelmed.

I have great admiration for the moms who strike more of a balance, the moms who take a stand for themselves and say, “You know what? I deserve this and I’m going to enjoy it without feeling guilty about it!”

Fellow mom Marci says she used to feel the guilt, but not anymore. “I found that doing *me* made me calmer and more available to my cherubs!!! Best thing I could’ve done for the family.”

Marci is one of several moms who have managed to make peace with the idea that they are as important as the people they take care of. As Jacquie says, ” If I don’t take care of ME, who’s going to take care of THEM?”

Randi agrees. “I realize that if I don’t take care of me, I’m going to be grumpy and not a good mom.”

Today is Mothers Day in most parts of the world. It is a day when, if we’re lucky, our families take the time to let us know they appreciate us. Why don’t we do that for ourselves as well, and for each other? Let’s give ourselves a much-deserved pat on the back and acknowledge all that we do.

And let’s make a decision to take care of ourselves and spoil ourselves once in a while, without feeling guilty, not just today but always.

Because we deserve it.

Happy Mothers Day.

(Photo credit: http://www.flickr.com/photos/sergemelki/3519265411/. This picture has a creative commons attribution license.)

Here Come The Butterflies

12 May

I am participating in the 2012 Wordcount Blogathon, which means one post every day for the month of May.

Two weeks and one day from now, I will be lining up for my first half-marathon of the season, the Toronto Womens Half-Marathon. I am looking forward to this race immensely. Not only for the chocolate station. And shallow and all as I am, not only for the aid stations manned by shirtless firefighters who douse you with water.

I am excited about the challenge of it. With the help of my friend and coach Phaedra, I have really been pushing the boundaries in my training this season. I have managed to survive some fair significant disruptions, like unexpected travel to South Africa and a couple of bouts of illness.

The two races that I have done this year – the Good Friday Ten-Miler and the Toronto Yonge Street 10K – have both yielded PB’s (personal best times). I am eager to see if I can repeat the performance over a longer distance.

I just have to get through the final phase of training, which is referred to by many runners as Taper Madness. While tapering is an essential part of training, it can be a period fraught with anxiety and mild (or not-so-mild) paranoia.

The science behind tapering is this: you spend twelve or fourteen weeks training intensively for this event, putting in your mileage and your speed work, having a battle of wits with hills, and spending entire Sunday mornings out on the road. You build your stamina and your strength, and you get used to spending long periods of time on your feet.

The training is a long process that should be properly planned and carefully executed. And if you’re not physically capable of running the distance of a half-marathon two weeks prior to the race, chances are that you won’t be ready on race-day either. The last two weeks don’t really have any value in terms of building your fitness level or your strength, so you are better off cutting back your mileage and giving your muscles time to rebuild in time for the big day.

Because you are reducing your mileage, you have more of a build-up of energy, so you get jittery and anxious, and you start imagining that the twinge in your ankle means it’s broken, or that the little pimple on your chin means you have smallpox.

Some runners can get through the tapering period without incident. They are cool, calm and collected, and don’t suffer from any attacks of nerves. “Butterflies? What butterflies?” they ask with infuriating serenity, when you question them about whether they are nervous about their upcoming race.

Other runners cannot sit still. They pace around restlessly, talk a mile a minute and fidget incessantly. They turn into hypochondriacs, anxiously assessing every little ache and every occasion on which they need to clear their throats. Because they stop sleeping, they advance seventy-two levels in Farmville in a two-week period.

Guess which category I fall into? I’ll give you a hint: I’m sitting here typing this at 4:12 in the morning.

Technically, my taper hasn’t even started yet. It will start after my long run tomorrow. But I tend to start feeling the jitters right before that last long run. I feel that there’s a lot riding on the run. If it goes well, I will go into Race Day with confidence, but I will be worried about whether I can repeat the performance. If it goes badly, I will be obsessing about whether I’m ready for the race.

So the butterflies have shown up, right on schedule. No matter what tomorrow’s long run is like, I am going to spend the next two weeks driving my family nuts and breaking out into occasional bouts of maniacal laughter. At night I will be banished to the sofabed because my incessant fidgeting will keep the husband awake. I will constantly bug the children, who will indulge me by playing with me for a while before my six-year-old gets exasperated and goes, “Momm-meeeee. You don’t play the gamethat way.”

Right now, the butterflies are not obeying any air traffic rules. They are flying around in chaos. But it is my hope that when the starting siren goes off on the day of the race, the butterflies will reconfigure themselves, arrange themselves into beautiful patterns, and fly in formation.

(Photo credit: http://www.flickr.com/photos/ilker/287399328/. This picture has a creative commons attribution license.)

Emailing The Tooth Fairy

11 May

I am participating in the 2012 Wordcount Blogathon, which means one post every day for the month of May.

I will never forget the day my firstborn son cut his first tooth. I had been expecting it for so long that I had almost given up waiting. I mean, the kid was eleven months old and we were starting to think he’d be some kind of toothless wonder.

On the day in question, we were at a music industry trade show with my husband. He was in the main exhibition area, doing whatever schmoozing he needed to do with potential clients and suppliers. I was in the large lobby area with George, listening to a music troupe play a set of traditional African music. People were milling around the crowd, handing out free African drums to the kids. The babies, like George, got African rattles: miniature drums on sticks that have beads attached to them by a piece of string.

George was initially non-responsive to this idea, so I accepted the rattle on his behalf. As soon as he saw how it worked, though, he made a grab for it, and as he opened his mouth in delight, there it was. A tiny little pearly white blip peeking through his gum.

He may have been late getting his first tooth, but he certainly made up for lost time. The poor kid averaged one tooth every three days or so, which was not fun for anyone in the family.

A couple of years later, I got to do it all again, this time with my younger son James. I feel oddly guilty that I don’t remember the appearance of his first tooth (masters of guilt, we moms – we outdo even the Catholics in the guilt department). I do remember that James teethed earlier than George had, at about seven months, and his second and subsequent teeth took a lot longer to show up. There was one time, when James had four or five teeth, when nothing happened for about two months, and I was thinking, “Come on, already!”

Eventually my kids each had a full complement of teeth. Now the next inevitable wait began: when would George start to lose his teeth?

His first loose tooth wobbled around precariously for weeks. We were waiting and waiting for this thing to just give it up and fall out, but it hung on stubbornly, seemingly by no more than a thread. Eventually he lost it, the day before he turned seven. He was biting into his sandwich at the centre where he was receiving IBI  therapy, and the tooth just popped out and landed on the table in front of him.

He lost his teeth in much same way he had gained them. Teeth were falling out left, right and centre, and after about a month George looked like a fourteenth-century sailor with scurvy. But with time, the new teeth grew in to replace the old.

At almost nine, he just has a couple more teeth to go. It was initially hard for this sensory-sensitive autistic child to be losing his teeth, but by now he is so used to it that he barely notices it.

When he lost the most recent tooth, there was trouble – not from him, but from his little brother, who is now six. As George wandered around the house looking all gappy-mouthed, I found James weeping quietly in his room.

“What’s the matter?” I asked him.

“George’s tooth fell out and mine didn’t,” he sobbed, as if someone had just stabbed his favourite teddy bear.

“Don’t worry,” I soothed. “Your teeth will start falling out any day now.”

“But I want to have a gap like my brother!”

Try as I might, I couldn’t comfort this kid. I had to let him cry it out. I mean, what was I going to do, yank out one of his teeth?

Three days later, James got his first loose tooth. It hung on for weeks, much like George’s first loose tooth had. For the whole time, James was planning what he was going to do with the money the tooth fairy left for him. To hear the kid talk, you would have thought he was going to get a thousand dollars. I know inflation has hit the tooth fairy since my childhood days, but not quite to that extent.

Finally – finally – the tooth fell out two days ago. It was a near-disaster, though, because James accidentally swallowed it and therefore did not have it to leave for the tooth fairy. Thanks to modern technology, I was able to come up with a mitigation plan: I took a picture of the gap and saved it to my computer. I attached it to a blank email form and told James that if I emailed the picture to the tooth fairy, he would surely get his reward. I even made up an email address. gappysmile@toothfairy.com.

The following morning, James woke up and stumbled sleepily to me while I was getting ready for work, the way he always does. He sat on my lap, and I enjoyed the feeling of him snuggling up to me with his head on my shoulder. All of a sudden, he sat up straight, his little body quivering with alertness. He gasped as if he had forgotten something, and then he slithered off my lap and ran to his room. His eyes were bright with excitement as he ran back to me, holding up the shiny two-dollar coin that the tooth fairy had left under his pillow.

He clambered back onto my lap, and although George’s gaps have long since filled in, James said contentedly, “Now I have a gap. I’m just like my big brother.”

And still clutching his two-dollar coin, he went back to sleep, with dreams of his brother dancing through his head.

Run With The Sound Of Music: Or Maybe Not

10 May

I am participating in the 2012 Wordcount Blogathon, which means one post every day for the month of May.

To run with music, or to run without music… that is the question. A surprisingly controversial question at that. While many runners are appropriately moderate in their stance about whether or not it is OK to block out the world with music during a run, there are those on both sides of the debate who can be astonishingly militant about their stance.

Those who are in favour of the tunes say that it counteracts the monotony of a long run, helps keep energy and motivation levels high, and simply offers the opportunity to enjoy some good music. They say the anti-music people are antisocial know-it-alls who think it’s OK to jostle a slower runner who happens to wearing earbuds.

Those against the music-and-running combination cite things like safety, being in tune with one’s body, and enjoyment of Mother Nature. They accuse the music-lovers of being antisocial plodders who cannot hear when they’re supposed to get out of the path of a faster runner coming from behind.

I am firmly in the middle of the road on this one. I listen to music on all of my training runs, but never on races.

I do my training on my own, partly by circumstance but largely by choice. I love the feeling of getting out on the open road early in the morning, when it’s just me. It allows me to escape from the “real world” of people and responsibilities, and to be beholden to no-one but myself.

Having said that, two hours can seem like a very long time when you don’t have the company of music. I never find running boring, but it can get lonely, and the music counteracts that. If I find songs with the right beat, it can also be a nifty training tool, and to be quite honest, it is refreshing to be able to listen to an entire song without hearing kids start World War III over a single piece of Lego.

I used to listen to music while racing as well, but the Energizer Night Race of 2011 cured me of that. I had no choice but to leave my music at home, because earbuds were banned from the course. A third of the way into the race I could understand why: the park that the race was run in was very, very dark, and although the headlights that came with the race kit helped light the way, all senses had to be on full alert.

The race went well – so well, in fact, that I started thinking that maybe the lack of music had been beneficial. I tested this theory in my next race two weeks later and set a new personal best time for the distance. And that was enough to convince me to run my races with nothing but the sound of the wind in my ears.

When I race, I’m not running to improve my form or experiment with speed. I’m not out there just for the joy of running. I’m running that race to get the best time I possibly can. I am racing – even though I have no hope of actually winning the race, I am trying to beat the most intense competition there is: myself.

While music is a pleasant distraction on training runs, I find it to be a hindrance on races. Without it, I can focus on paying attention to what my body is doing instead of trying to match my pace to the beat of the music. I can run according to how I feel, and for some strange reason, I am better able to manage my pacing to get a personal best time.

I have discovered that I don’t actually need the music when I’m racing. I get so buoyed up by the collective energy of the runners around me, and that is enough to keep me going. I enjoy engaging with spectators who cheer me on, and I like the feeling of getting pumped up by the entertainers along the course. Although I take my racing very seriously, leaving the music at home definitely helps me get more out of the experience and have fun.

In every single race I have run since I stopped racing with music, I have achieved a personal best time. There’s definitely something to that – at least, for me.

There is room for all runners on the road – the ones who listen to music and the ones who don’t. Watch this space next week for tips on how the two camps can coexist safely and peacefully.

(Photo credit: http://www.flickr.com/photos/karrienodalo/3227478067/. This picture has a creative commons attribution license.)

Leading The Food Revolution

9 May

I am participating in the 2012 Wordcount Blogathon, which means one post every day for the month of May.

Today’s story starts with Megan, the 15-year-old daughter of my friend Michelle.

In many respects, Megan is a typical teenage girl. There are celebrities she loves and those she cannot bear the thought of. She enjoys going to the movies, has dreams about the future, and when the time comes, she would like to wear a pretty dress to her senior prom.

Except that if things don’t change for Megan soon, there may not be a senior prom. Because in order to go to senior prom, you have to go to high school. And Megan is too sick to go to school.

When Megan started experiencing severe dizziness a couple of years ago, her mom took her to a string of doctors who were not able to identify the cause. Even a week of tests in hospital did not reveal why this young girl was so off-kilter that she had to rely on a wheelchair.

The dizziness was not Megan’s only problem. She had a prolonged bout of respiratory illness, her periods were problematic from the very first day, and she became unable to sleep for more than two or three hours a night, in spite of being constantly exhausted.

Eventually, doctors were able to determine that Megan had Fatty Liver Disease. It became clear to her mom, Michelle, that poor nutritional choices had led to this outcome.

But Michelle, who has endured a lot of hardship in her life, is not one to be beaten down. Instead of simply accepting Megan’s condition, she decided to do something about it, not only for her own family, but for her entire community. She started by setting up a Facebook group for people suffering from Fatty Liver Disease.

Then she started making radical changes to her own and her daughter’s lifestyles.

While Michelle acknowledges her role in making less-than-ideal food choices for Megan, she points out that many parents simply do not understand the implications of the foods that they and their families consume. As a society, we are so caught-up in healthy-sounding labels like sugar-free this-thing or low-fat that-thing.

There is no denying the fact that food manufacturers hire very smart marketing companies who can successfully deceive entire segments of the population into believing that something is good for you when it’s actually leading you to an earlier grave.

Michelle decided that it was time for this to change, and so she has spearheaded the organization of an event in her community that will teach children and adults about healthy eating habits in a fun and engaging way. The Jamie Oliver Food Revolution Day is a global event being held in communities everywhere on Saturday, May 19th.

Michelle is organizing the event in London, Ontario. This day promises to provide entertainment and enlightenment for the whole family. Kids will enjoy such activities as making fruit or vegetable characters , while adults will learn how to make sense of those confusing nutrition labels and how to easily incorporate healthy eating into our busy lifestyles.

If you live anywhere near London, Ontario,  it is well worth attending this event. For details give Michelle a call at +1 226 234 4006.

And if you don’t live in London? Check out the Food Revolution website to see if there’s an event near you. It is going to be a global phenomenon on May 19th, with hundreds of public events and dinner parties in more than 300 cities worldwide.

Today’s children are the first generation who, on average, will have a shorter life expectancy than their parents. Michelle is determined to do what she can to turn the tide not only for Megan, but for other kids in the community.

Let’s all support the Food Revolution on May 19th. Together, we can truly change the world for our children.

(Photo credit: Denise Testa, JD Communication and Design)

You Think You Know…

8 May

I am participating in the 2012 Wordcount Blogathon, which means one post every day for the month of May.

Today, I am also participating in the WEGO Health True Life Tuesday Blog Party, in which participants start their posts with the phrase, “You think you know, but you have no idea…”

You think you know, but you have no idea.

You look at parents who have special needs kids, and you contemplate the things you think they are doing wrong. Thinking you know better, you utter sentences that start with the phrase, “If that was my child…”

Until you get handed a diagnosis of autism and realize that, wait a minute, that is your child. You find yourself facing the same challenges as all of those parents you used to be quick to judge, and you find yourself responding in very similar ways.

You have no idea what special needs parenting is like until you are wearing those shoes.

Yes, my child has sometimes been the kid having a very loud meltdown in a grocery store.
Yes, I am the mom who has occasionally snapped needlessly at her kids in public, because she was just so overwhelmed.
Yes, I sometimes let my child play on the computer for longer than is considered ideal, because I am so desperate for time to take a shower.
Yes, I do want to get all available services for my child, but that is way easier said than done.
No, I don’t invite my son’s classmates over for playdates to encourage interaction. They are all special needs kids, and seeing each other outside of school is too weird and overwhelming for them.
Yes, my son’s hair is tangled and unruly. He is terrified of having it either washed or cut, and I just have to do the best I can. I know it doesn’t always look great.
Yes, I vaccinate my kids. I think the autism/vaccine link is pure bumph. I respect anyone who does believe in the link and I expect the same courtesy from them.

And no, I had no clue what special needs parenting was all about until I woke up one morning and discovered that I was now one of them. Many things have surprised me about this journey. There are things both good and bad that I did not expect. Being a special needs mom has taught me a great deal about myself and about other people. One of my biggest surprise discoveries is that I have far bigger reserves of patience than I thought. For the most part, I can stay calm in the face of a meltdown, and do what I need to do to see myself and my son through the storm.

Last week, I used my social media channels to ask other moms the question: just what is it about special needs parenting that has surprised you the most? I got responses that were both poignant and uplifting. Many of them I can relate to myself.

Here’s what other special parents have found surprising about their journeys:

  • The apathy of most people. If it’s not affecting them personally, they don’t give a crap or they say ” Why should I? It’s not affecting me” (Leigh)
  • It’s not as bad as I thought it would be. (Jacquie)
  • How much energy it takes at times…like mid-meltdown… (Lucette)
  • The lack of community support. I was also surprised by my reaction to that – one of passion and action! (Amy)
  • How ignorant the NT’s can be (Ron) (For the uninitiated, NT means neurotypical, a fancy term for “typically developing”)
  • How strong it can make a mother! (Mimi)
  • How screwed up my idea of success was. (Jennifer)
  • How uncaring the rest of the community is and how much energy it takes to keep on fighting for acceptance. (Susan)
  • The fact that we have to fight our school systems for EVERY support and service that will help our kids in the future. (Barbara)
  • How hard it is to accept offers of help, and how much better it works for everyone when I do. (Ruth)
  • How strong I’ve become, physically and emotionally…well, most days anyway. 😉  (Megan)
  • How after a while you stop seeing the special needs, and just see the child. It’s only ever other people who make you notice the special needs again. (Freya)
  • How hard but rewarding it is! (Hike. Blog. Love)
  • How much you truly learn from them! And I now know the real meaning of determination. (Vera)
  • How I have forced myself to re-evaluate some of the values I had about life. Some people will always do “bad” things, our faith in a Higher Power should be our motivation to forgive those people since we ask forgiveness from “Above” and HE forgives indiscriminately (Naadia)

Reading what these parents have to say should send a very clear message that even when there’s a common diagnosis, like autism, everyone’s journey is unique. We all have our own sets of challenges.

So next time you think someone is falling short of what they could or should be doing as a parent, just remember that you’ll probably never have the opportunity to wear their shoes.

(Photo credit: http://www.flickr.com/photos/libookperson/6187904322/. This picture has a creative commons attribution license.)

Maintaining The Balance

7 May

I am participating in the 2012 Wordcount Blogathon, which means one post every day for the month of May.

I’ve been feeling disoriented and out of sorts all day. I woke up very early this morning after a night of virtually no sleep, had to deal with an autism meltdown resulting from a power outage, and then due to circumstances beyond my control, had to skip the long run I’ve been itching for all day.

Because of all of this, when I sat down to write this post, I came up empty when I was digging around in the warehouse of my mind for a topic. All is not lost though, because Facebook came to the rescue. I posted a status update asking for topic ideas, and a friend of mine who is a fellow mom immediately fired off a whole list of ideas, that will pretty much see me through the rest of the month.

If anything, I was left with the opposite problem: too many ideas to choose from.

In the end, I decided on this one for today:How does Mom manage parent time, marriage time and self time while also working outside the home?

How indeed?

Moms in general have to wear many, many hats. Special needs moms have to wear even more, simply by virtue of the fact that parenting a special needs child requires a completely different set of parenting skills to parenting a typically developing child. Add to that the fact that I work a full-time job that involves two hours of commuting each day, and I do all of the admin for my husband’s business. I also make sure the household bills get paid, and I am trying to establish myself as a writer.

It can be very, very hard to carve out time for my husband, much less for myself. But for the sake of my sanity and everyone’s happiness, I have to find a way to do it.

I have tried to stay on top of things through a variety of means. Written daily schedules. Routines. Planning. To-do lists.

All of that helps, but it is not the complete answer. I can plan and schedule until the cows come home, but it all comes to naught without one crucial ingredient.

Commitment to go to bed by a certain time.

It is incredible how powerful a simple commitment like that can be. It cannot merely be a commitment with myself – it has to be a declared intention. I don’t exactly post it on Facebook, but I do tell my husband that I will be going to bed at such-and-such a time. Once I make and state it, I feel obligated to follow through. And so my mind immediately calculates how much time I have, and how I can best arrange what I need to do, to fit within that time.

And you know? It works.

By following this practice, I have been figuring out how to do things more quickly. I have also been spending more time with my husband and getting enough sleep to enable to get up early to go running in the mornings.

I don’t always get it right, as some late night status updates on Facebook will testify, but I am doing a lot better than I used to.

Now, if only I could find the time to follow my secret career ambition of becoming a Mythbuster…

(Photo credit: http://www.flickr.com/photos/leoglenn_g/5789714663/. This picture has a creative commons attribution license.)

Remembering The Things That Matter

6 May

I am participating in the 2012 Wordcount Blogathon, which means one post every day for the month of May.

Walking down the aisle with my brother

This week, my first wedding anniversary came and went without me really posting anything about it, other than a status update on Facebook, in which I tagged my beloved.

For about three months before my wedding I was fraught with stress. Had I sent out the invitations with enough time to spare? Would we get a DJ? Would the venue be OK? Where would I get shoes that were comfortable?

I worried about whether a wedding would be too overwhelming for a child with autism. I had a falling-out with the lady who was supposed to make the cake. We couldn’t afford to pay for decor and we hoped that what the venue was providing would be sufficient. My intended and I had silly little arguments over nothing.

My bridesmaid, speaking from the comfort of her decade-old marriage, assured me that no-one would care about the details. When people looked back on our wedding, they would not remember what colour the napkins were or the fact that I hadn’t been able to pony up the cash for chair covers.

To tell the truth, I barely remember those details myself. The stuff I do remember seems so much more important. Like the fact that my friend Fran, who was doing the music for the ceremony, arrived a few days in advance and along with my mom, helped me wrap the guest favours and take care of final details. Or the fact that her friend, who was accompanying her to the wedding, arrived two nights before and in spite of  being a complete stranger to me, cheerfully rolled up his sleeves to lend a hand.

I remember the fantastic respite worker who took charge of the kids for the day and helped them have a wonderful time. And my maid of honour and bridesmaid, who showed up on my wedding day and whisked me off to get my hair and makeup done.

I recall the humour in the fact that the only time Jehovah’s Witnesses have ever come to my house, it was on my wedding day. And how funny it was when various people had to take turns doing up the buttons on my dress.

And I remember – with such fondness and love – walking down the aisle on the arm of my brother, who looked so proud (and possibly relieved to finally be marrying me off) as he ushered me in to my future.

Affection, Empathy And Autism

5 May

I am participating in the 2012 Wordcount Blogathon, which means one post every day for the month of May.

Several years ago, my mom volunteered at a “Riding For The Disabled” program. She would help a child with cerebral palsy or Downs Syndrome onto a horse, and then lead the horse around a field. Many of the kids she worked with would be on the edge of meltdown at the beginning of the designated hour, but after five minutes on horseback they would be completely calm.  My mom, always an animal-lover, adored the horses, and she loved working with the children.

There was a little boy with autism in the group, and although my mom didn’t love him any less than the other kids, she did find him a lot more challenging to work with. He was a highly intelligent child with severe communication deficits and some intense behavioural issues. Once settled on his horse, he would jab at the horse’s neck and tug at its mane, and any attempts by my mom to stop him would lead to meltdown. She swore that he deliberately kicked her as he was getting down from the horse after his turn. More than once she returned home with nasty bruises on her arms or legs.

Although this was all in the day before autism became a more direct part of our lives, my mom was sufficiently aware to know that the child’s behaviour was a result of his autism, and not a personal vendetta against either her or the horse. She believed, though, that he was not remotely capable of either affection or empathy. And because people form generalizations based on what they know, for a long time we subscribed to the commonly held belief that people with autism are not able to have meaningful connections with other human beings.

In fact, when we were waiting for my own son’s diagnosis, in our ignorance we pretty much ruled out autism in our own minds.

“He’s so affectionate,” we would say. “It couldn’t possibly be autism.”

Now, of course, we know better, and we are able to gently correct the people we come across who follow the same stereotype.

My son George may not ever be a great talker, but there is nothing wrong with his ability to feel and express love. All I have to do to know this is come home after work. My husband and sons watch for me from the front window, and as soon as they see me walking down our quiet street, my husband opens the door. The kids dash out and race each other to me. And then, with looks of pure joy on their faces, they launch themselves at me so hard that the force of their love knocks me off-balance.

Sometimes, when I am working on my laptop at home, George will  come up to me and somehow arrange his lanky eight-year-old self on my lap. And he will wrap his little arms around my neck and hug me, oh so fiercely. Then there are the times I wake up in the night to find him snuggled up to me, sleeping peacefully with one of his hands curled around a strand of my hair.

Admittedly, there was a time when I worried about what seemed to be a lack of empathy towards his little brother, James. About a year ago, I told a member of George’s therapy team that whenever James was crying, George would laugh hysterically at him. I expressed concern at the lack of empathy and the apparent joy that he got out of his brother’s pain. The therapist smiled at me kindly and said, “He’s a seven-year-old boy. That’s what seven-year-old boys do.”

While most other people have to be educated on the behaviour of special needs kids, my husband and I frequently have to be told how typical kids behave. It’s a little bizarre, but there it is.

The truth is that although George can be a typical pain-in-the-ass brother, just like any other brother, it is clear that he adores James. He is never comfortable with James’ absence, and his demeanour takes on an air of tenderness when James is sick. There are times when one of the boys will go in search of the other one during the night, and I will find them in the morning, curled up together, with George’s arm thrown protectively over James’ shoulders.

When I think about George’s future, there are many things I worry about.

His relationship with his brother is not one of them.

(Photo credit: Kirsten Doyle)

The Transience Of Life

4 May

I am participating in the 2012 Wordcount Blogathon, which means one post every day for the month of May.

As I write this, I am sitting on the subway (having miraculously gotten a seat with enough room to type) on my way to the memorial service for my friend Margaret, who died last week.

Her passing was a big shock to me and my husband. We knew that she had been sick, but we had no idea that her illness was life-threatening. We did not know that she had cancer.

As I prepare to honour Margaret’s memory and offer condolences to her husband, I am still reeling from the very unexpected death of my aunt just three months ago. I find it hard to believe that so recently, I was jetting to the other side of the world to comfort my mom and help scatter the ashes of a woman who had been like a second mother to me.

These events – the deaths of my aunt and my friend – have led me to think almost obsessively about the transience of life. I am very aware that at some point over the next few years, I will lose my mom, who is now the last surviving sibling in her family. In all likelihood, because I am ten years younger than my husband, someday I will be widowed – hopefully a long time from now.

And I think about how I am getting along with everyone in my life, how much they all mean to me, and how much it would devastate me if any of them were to suddenly not be here anymore. I worry about whether I am a good enough mother, wife, sister, daughter, and friend.

I find myself feeling permanently shaken by the idea that at any moment, someone I love could simply and suddenly be gone forever. Arguments and disagreements upset me a great deal more than they used to, because what if I never get a chance to make it up with the other person? What if I never get to say sorry?

Earlier today, I gave one of my best friends a directive that she is not allowed to die. Ever. Not understanding the depth of how I feel about all of this these days, she asked why.

Well, it’s because I value her friendship and although our only communication is via email and Facebook, she is an integral part of my life. And I want her and my other loved ones to be there forever.

I know it’s a simplistic wish – for people to never die – but whenever I lose someone close to me, I feel like a part of me dies with them.

The only bright part of this is that when they die, a part of them stays alive with me – a part of them that I carry with me always, no matter where I go.

My point in all of this is that life is short. There is no time for meaningless disagreements that really don’t matter, and there is no time for people to treat their loved ones in a way that makes them feel unhappy, unwanted, or unworthy.

We need to embrace the people we have, while we still have them.

And when arguments happen, as they invariably do with us humans, there is no better time to patch things up than the present.

(Photo credit: http://www.flickr.com/photos/mikebaird/3036430387/. This picture has a creative commons attribution license.)