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Sometimes Goals Change – And That’s OK

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At the beginning of this year, I had some lofty plans. I was going to either launch a freelance business or become gainfully employed. I was going to run three half-marathons in addition to my first 30K. I was going to clean up my eating, once and for all. I was going to find ways to become happier, more fulfilled, and better at being me.

We are two months into the year, and so far, none of my goals are shaping up quite the way I wanted. Although I have been looking for and applying to work opportunities, my heart hasn’t really been in it. I’ve been feeling a little adrift, not really knowing what direction is the right one. In addition, as hard as it’s been financially, there is one aspect of my unemployment that I’ve been enjoying: having time to be a mom. I love being here to get my children ready for school, and I love being here when they get home. At some point, unless I can get enough freelance work to keep the wheels turning, I will have to give that up.

My running goals haven’t been panning out, either, largely because of the winter we have had. Months ago, I registered for the Around The Bay 30K race, which happens on March 30th, and I promised myself that I would set my mind to my training. It has been a lot easier said than done. To be fair to myself, I have tried hard, but the Polar Vortex had other plans for me. Because of the ice storms, excessive snow and unbelievably cold temperatures, I have been forced off the road and onto the treadmill. The few runs that I have managed outside have been challenging – running through snow, running through icy puddles of melting slush, falling on ice and hurting myself.

A couple of weekends ago, while I was heading to the gym for yet another long run on the lab rat machine, I suddenly asked myself how much I cared about doing this 30K race at the end of the month. On the one hand, I hate registering for races and not doing them. But on the other hand, how wise would it be for me to attempt a new distance right after the worst winter I’ve ever experienced?

As I did that run on the treadmill, I pondered the idea of bailing on the Around The Bay race and instead going for the Midsummer Night’s Run – also a 30K event – that happens in August. I mentally experimented with this notion, and discovered that I felt surprisingly comfortable with it. Not only does it feel comfortable, it feels right.

And so I found another runner to take my spot at the Around The Bay race and I transferred my registration to him. As soon as I received payment from him, I signed up for the Midsummer Night’s Run. Now I can comfortably ease myself into outdoor training, and I will have an entire summer to train for this new distance. It means that I will only be running two half-marathons this year instead of three, but that’s OK.

And that is really the whole point of this post – that there is no shame in changing a goal. This time last year, I would have been horrified at the thought of not running Around The Bay. I would have berated myself for deciding to cut a half-marathon from my schedule. I would have thought of myself as a failure, as a person who gives up. But something in me has changed in the last year. Maybe I’m just getting older and wiser, or maybe I’m getting more realistic. Or maybe I’m simply realising that I deserve to give myself a bit of a break.

I still have some things to work on – like sorting out some kind of regular income, and developing eating habits that are consistently healthy. But I feel that in accepting and embracing changes to what I want to accomplish, I am at least moving closer to being happier with who I am.

This is an original post by Kirsten Doyle. Photo credit: RichardStep.com. This picture has a creative commons attribution license.

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Open Letter to Ann Coulter

Dear Ann Coulter,

Before I get to the point of this letter, I want to get some preliminaries out of the way.

I don’t agree with your political views, and I don’t like the way you present them. I find you to be offensive and abrasive, and generally disrespectful to your fellow man – even those who check the same name you do in the ballot box.

This is not about politics, though. While I have been kind-of following the US presidential campaign, I don’t have a stake in it. I do not live in the United States, and the outcome of the election will not affect me in my day to life. I am just a Canadian mom muddling through life as best I can, striving for the happiness and wellbeing of the two children I have had the honour of bringing into this world.

I have many of the typical modern-day mom challenges. My boys keep me busy, I spend too much time commuting so that I can work full-time to provide for my family, and my husband and I can barely squeak in any time for ourselves.

In some ways, though, I am not really typical, because both of my children need some extra help. My younger son is struggling with reading and writing. My older son has autism. They are both highly intelligent, you understand, but they have their challenges.

Ann, my older son – the one with autism – does not have any friends. He has been invited to exactly one birthday party in his whole life. He does not know how to play with other children, and when he comes home from school, he is not able to tell me what his day was like. He is different from other kids, and it is obvious.

But do you know what? Not once has any child said a mean word to my son. I realize that as he approaches his teenage years things may become more difficult for him, but until now, he has never experienced anything but tolerance, acceptance and kindness from other children.

No, the nastiness – the looks, the snide comments, the sniggers – have come from adults. It has been the so-called grown-ups who have shepherded their children to the other side of the playground. It has been the grown-ups who have smirked in the face of my son’s public meltdowns and told me that my child “needs a good hiding”. The grown-ups have been the ones to stare rudely at my son’s stimming while their own children have acted as if nothing out of the ordinary was happening.

Ann, the one time I heard someone refer to my child as a retard, guess who it was?

Yep, you got it in one. It was an ADULT. Someone who really should have known better.

Someone who freely uses words like “retard” without any care for how it might hurt other people.

Someone like you.

Do you know what connotations that word has for a special needs mom like me? Do you realize that you are tossing out a term designed to hurt and ostracize children like my son? Do you have any idea that this word is exactly what is stopping my son and thousands of others like him from being accepted as a valuable part of society?

Do you even care?

I’d like you to take a moment to look at the picture at the top of this letter. Really look at it. Look into the eyes of that sweet, innocent child, and then tell me if you feel good about being so insulting to him and doing your part to damage his chances of acceptance and happiness.

If you must trash-talk the presidential candidates, please do so without using words that are offensive and divisive.

Thank you.
Just another mom

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There is No-one Alive Who is Youer than You

Although I am a bit behind on my prompts, I am participating in the WEGO Health “Advocating for Another” carnival, in which I describe our lives as an autism family.

Today’s prompt (OK, yesterday’s prompt): Quote, End Quote. Post – Let someone else’s wise words inspire you. Find a quote that moves you in some way then free-write about it. Don’t stop writing for 15-20 mins. Now post!

Dr. Seuss was a wise man. He had so many profound things to say that one could be forgiven for thinking he was a philosopher disguised as a children’s storybook writer. I am raising my children to live by the words of Dr. Seuss, because he really did have sound advice for every occasion.

A couple of years ago, I came to the uncomfortable realization that I had fallen into the habit of inadvertently defining my son by virtue of his autism. It was always the first thing I told anyone.

When asked about my family, I would volunteer the information that I was married with two boys. “My older son has autism,” I would say, as if my audience just had to know that about George.

The truth is that I have been so determined to be open about my son’s autism in order to knock on the head any notion that there should be a stigma attached to it. But I started wondering if perhaps I was doing my son a disservice by labeling him from the outset, and thereby creating an instant perception that was based on his diagnosis, and not on who he is as a person.

So I decided to change my approach. While I will never, ever make any effort to hide the fact of George’s autism, I no longer make a point of stating it up front. Because George is not just a boy with autism. He is a boy, a beautiful person with individuality and many great qualities, and he has the right for people to get to know him as such.

The subject of autism always comes up, and it never takes very long. I am always happy to talk about autism and the challenges of special needs parenting, but now it is something that arises naturally in the course of conversation. I no longer treat it as the central element to my son’s existence.

I want George to grow up knowing that he is loved and valued because of the person he is. There is no-one in the world like him, and every day I thank my lucky stars that I’m the one who gets to be his mother.

(Photo credit: Brendan-c. This picture has a creative commons attribution license.)

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What Autism Parents Have Patched Together, Let No Media Man Put Asunder

I am angry.

I’m not talking about mild aggravation here. I am scream-in-frustration spit-in-someone’s-eye angry. I would like to take the object of my anger, lock him into a room with me, and give him a stern what-the-bleep-are-you-thinking talking to.

Deep breath… soothing thoughts…

Allow me to explain.

As an autism parent, I spend the better part of my life fighting for stuff. Six years ago, I fought for the assessment that led to George’s diagnosis. Then I fought for services. Every year I fight for funding to pay for respite workers. I fight for educational accommodations and opportunities for my son.

I fight for awareness.

Most of all, because I want my son to have the opportunity to live a happy, healthy, productive life, I fight for acceptance. I try to encourage people to look past the more challenging aspects of autism to see my child for who he is: a beautiful human being, full of love and bursting with potential.

From time to time I see baby steps of progress. Someone might leave a comment on my blog saying that they have a greater understanding because of my writing. Or I might see comprehension dawn in someone’s eyes when I offer an explanation for a grocery store meltdown. Those moments of progress are so gratifying, because they give me hope for my son’s future.

And then, along comes MSNBC host Joe Scarborough, stating that the man responsible for the Colorado movie theatre shooting was “probably on the autism scale.”

Thanks, Joe. Way to promote acceptance for people with autism. Telling the world that a kid with autism could potentially grow up to be a mass murderer really helps our cause.

What astounds me is that Joe Scarborough is the father of a child with Aspergers. Having parented a child on the spectrum, hasn’t he had to have the same fights as other autism parents? Has he not had to beg for funding, or services, or the rewording of a point in an IEP? Has he not dealt with the stares of unsympathetic strangers or the ostracism of his child?

Has he not worried about whether his son will be accepted by the society in which he has to live?

Joe Scarborough’s statement about the Aurora shooter is not based on anything but dangerous speculation. It is my hope that most people will have the sense to dismiss what he said as groundless nonsense. It is my fear that he has planted new seeds of baseless stereotyping that will serve to further isolate the kids we are trying so hard to integrate.

People really need to think before they speak. Especially people with any kind of public voice.

(Photo credit: Fifth World Art. This picture has a creative commons attribution license.)

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Autism Acceptance Does Not Mean Entitlement

 

Since my son George was diagnosed with autism five years ago, I have learned – to some extent, at least – how to field the rude comments of strangers and the blatant stares of their children. Through my writing and through daily interactions, I do what I can to educate and inform, to discourage people from discriminating against my child on the grounds that he is “different”. I strive for awareness and acceptance, and I work towards a world in which everyone accepts George for the wonderful, albeit a bit quirky, person that he is.

In this quest I am part of a not-so-secret society of autism parents who have a common goal. We post and share autism awareness messages on our Facebook walls. We circulate articles about what to say and what not to say to an autism parent, and we brainstorm ways to make things easier for our children. In all of this, our message to the world is this: Accept our children, include  them to the extent to which they are capable, and discover what wonderful people they are.

As passionate as I am about this cause, I do believe that if we’re not careful, we can take it too far. We can make the mistake of expecting the world to bend to our children no matter what, without making any effort to equip our children to live in the world.

During my afternoon commute from work, I regularly encounter a blind woman who has a service dog. When we get off the subway, we go to the same bus bay, although she doesn’t take the same bus as me. She waits patiently for her bus, politely asking people to let her know when her bus has arrived. She is so nice and charming, and people practically climb out of their own skins in their eagerness to assist her.

In contrast, there is a man during my morning commute on the subway who is confined to a wheelchair. He is rude and aggressive. He seems to be completely OK with literally pushing people out of the way in his efforts to be first onto the train when it arrives, and he acts as if he can behave as badly as he likes because he is disabled. People are not that inclined to help him and feed his sense of entitlement.

When George has meltdowns in public, there is often very little I can do about it, but that doesn’t stop me from trying. As I try to engage strategies to help him, I offer explanations of autism to anyone who might be nearby. Am I obligated to explain my son’s behaviour? Maybe not. But I do recognize that my son’s behaviour at those times can be disruptive and a little frightening to the people around us who cannot be expected to magically know that he has a invisible disability.

In the vast majority of cases, my explanations are met with smiles and nods of understanding. On the odd occasion, I have even received offers of help. Yes, there are always the people who tell me that I shouldn’t have my child out in public if he cannot control himself, or that my bad parenting is to blame, but there’s very little one can do about people with that kind of attitude.

The point is that the road to acceptance is a two-way street, with some effort required from both sides. It shouldn’t be all up to other people, who in many cases may not know how they’re supposed to act around someone with autism. The individual with autism (depending on the level of functioning) and his or her family should do their part to make things easier too.

When I was on the subway to work one morning, a girl of eleven or twelve boarded the train with her parents. With the sense that autism parents develop as an instinct, I knew that this girl had autism. She clearly had communication deficits, but she appeared to have a reasonable level of functioning in other ways. Since this was during the morning commute, there was standing room only on the train.

The girl lost it. Over and over, with increasing intensity, she screamed, “I want to sit down.”

Bear in mind that although I knew the girl had autism, in all likelihood the other passengers didn’t. Why would they? Autism is not a visible disability. To most of the people on the train, that girl was simply a brat acting out. Her parents did not offer any explanations, nor did they make any effort to stop the screaming or help their daughter.

As the screaming escalated to an ear-splitting “I! WANT! TO! SIT! DOWN!” a woman close to where I was standing gave up her seat to the girl, who instantly calmed down. No-one thanked the woman who had given up her seat: not the girl, and not her parents. The woman, quite justifiably, was annoyed. She said something to the girl’s mother about manners, and the girl’s mother made some obscure comeback about a commuter’s responsibility to give up their seat to people with disabilities. The woman shook her head in bafflement and moved towards the opposite end of the carriage.

I didn’t mind that the girl had started melting down over the lack of seats. People with autism do not have control over what triggers them.

However, I do mind that her parents expected everyone else to accommodate her without offering an explanation, and I mind even more that they allowed the situation to escalate without trying to help her. I believe that in their lack of action, they did a great disservice to the autism community.

The next time any of those commuters encounters a child having a meltdown in a public place, how understanding are they likely to be? Does this kind of thing not reinforce all of the negative stereotypes about autism that we are trying so hard to beat?

We (autism parents) spend a lot of time talking about how we wish people would accept our kids. But we cannot really expect someone to accept something when they don’t even realize there’s something to accept.

Is it acceptable for people to be rude and discriminatory towards individuals with autism? Absolutely not. That doesn’t mean, however, that everyone has an automatic obligation to cater to us and our children, no matter what, without a little bit of effort from our side.

We have to meet the world halfway on this one. Working with society, not against it, is ultimately what will build awareness, acceptance and inclusion.

(Photo credit: Kirsten Doyle)

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Butterfly

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 5 – Ekphrasis Post: Go to flickr.com/explore and write a post inspired by the image. Can you link it to your health focus?

When my son was first diagnosed with autism, we enrolled him in a local daycare centre on the advice of his speech therapist. He needed the social aspect of it, she said. He needed the group lunchtimes, the circle times, and all of the other elements of being part of a group of children. We were nervous about letting our sensitive, vulnerable son out of our immediate orbit, particularly since the daycare had never had a child with autism before.

To their eternal credit and our eternal gratitude, the daycare welcomed George with open arms. The director of the centre arranged for all of her staff to be trained in how to work with special needs kids, and George was very happy there.

During the summer months, the kids would be taken to play outside at the end of the day while they were waiting for their parents to pick them up. I would get off the bus from work, pick up my boy, and walk home with him. One day, I picked up his backpack from the darkened daycare classroom as usual, and went out to the playground. I always tried to arrive undetected so I could watch George at play for a few minutes. In typical autistic fashion, he always did his own thing. He played among the other kids, but not with them.

On this particular day, I got to the playground just in time to see a few of the other kids preparing to have a race from one tree to another. George stood apart from the kids, watching them shyly. When the daycare teacher said, “GO!” the kids scampered away from the start line while George stood by on his own.

My heart constricted with unbearable sadness. The whole thing seemed to underscore the isolation of autism, and I felt a sense of unjustness that my child was standing there on his own. With his lanky frame and long legs, he is a natural runner. He might have won that impromptu little race.

Damn autism, I thought. I knew these other kids well enough to know that prior to lining up for the race, they would have tried to encourage George to participate. But being locked in his own world, he would not have known how to. Outwardly, he seemed perfectly happy, but I couldn’t help wondering about that. What was going through his mind as he watched those other kids at play together? Did he feel any sense of isolation? Did he wish he knew how to join in?

I started thinking about sports teams and group activities. Was George ever going to be able to be part of a soccer team or a high school band? Would he travel in a pack of teenage friends or would he sit by himself in the high school cafeteria? Would he be excluded from birthday parties? Or would some group of well-meaning kids include him in their group and look out for him?

How was my child, with his autism and his social communication deficits, going to survive in a social world?

This is a concern that is with me more or less all the time, despite assurances from his teacher that he is starting to tentatively reach out socially at school, that he is getting better and better at participating in social activities, and that he is, in fact, an extremely well-liked member of the student body.

A few days ago I saw something that made my heart soar. Me and my husband were out for a walk with the kids, and we saw the teenage boys down the road shooting hoops in their driveway. Before we could stop him, George ran up to the boys and held out his hands for the ball. The boys good-naturedly obliged, and like a true natural basketball player, George bounced the ball on his knee and then threw it towards the hoop as if he did this every day.

The hoop was too high for George to have any success, and the boys offered to lower it for him. We told them not to worry and we went on our way, but not before the boys had invited George to play basketball with them any time he wanted.

When things like this happen, my vision of the future shifts, as if I’m looking at my son’s life through a kaleidoscope. I start to see possibilities that were previously hidden to me, possibilities that simply may not have been there before George grew and developed into them. Instead of seeing the kid who stood on his own while everyone else had a race, I now see the boy who, just for a few moments, joined other boys in a basketball game.

If I had, just a year ago, seen the picture that inspired this post, I would have thought, “George is probably never going to do that. He’s probably never going to romp around with friends or be invited to take part in impromptu soccer games.”

Now I look at that picture and realize that I am seeing the emergence of George as a social being. Maybe he’ll always be shy, and it is very likely that he will always need to be surrounded by people who will look out for him.

But his personality, his character, the very essence of who he is – that is emerging bright and beautiful, like a butterfly coming out of a cocoon.

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Remembering Dad – Seven Years On

I was watching The Apprentice when I got the news that my Dad had died. I should have known as soon as I looked on the phone display that something was wrong. Although it was a reasonable enough hour in my own time zone, it was three in the morning in South Africa. Be that as it may, when I answered the phone, I had no idea that I had lost a parent. Even though Dad had been gravely ill in hospital, the news came as a terrible shock.

The story of Dad’s illness and death is all too common these days. He had been sick on and off for a couple of years, but despite numerous visits to the doctor, cancer had only been diagnosed six weeks prior to his death. By then, the tumour in his bladder was too big to remove, and Dad’s only shot at survival was aggressive chemotherapy followed by surgical removal of the entire bladder. He survived the chemotherapy – only just – and he made it through the twelve-hour operation. In the end, though, his body was just too weak to survive all that it had been put through, and a few days after the surgery, he winged his way from this world to the next.

It was December 6th, 2004. Seven years ago today.

When we lose someone close to us, we are supposed to go through the stages of grief. Denial. Anger. Bargaining. Depression. Acceptance.

I had heard of this theory, of course, but I had never really found it to be of any use. It suggests that these stages happen sequentially, that you cannot ever get to acceptance until you have passed through the other four stages. According to this theory, once you are in the Acceptance stage, you’re done with your grieving.

The reality is that grieving is such a personal, individual process, and everyone does it differently. Denial has definitely been a big part of my own experience, and although I am mostly over that, I still have moments of thinking, “Gone??? What do you mean, gone? That’s impossible!” By contrast, I have not spent a single moment in the Bargaining phase, although that could still be coming.

What about this one, though? Guilt. Where does that fit in with this whole stages of grieving thing? I’m sure I’m not the only one to experience it with the death of a loved one. What could I have done? Why didn’t I travel home to see him before he died? Why am I remembering every argument we ever had, when I should be focusing on the many good times we shared?

The stage of grief that I have the biggest problem with, though, is acceptance. This is supposed to be the pinnacle, the reward we can all look forward to if we can just get through all of the other stuff that comes before it. But is it really truly attainable? Yes, we can get to a point where we can lead our lives without the person we have lost, but can we ever fully accept it? Can my Mom, who was married to Dad for forty years, be reasonably expected to completely reconcile herself with the fact that her husband – her best friend, the man she lived with, travelled with, and raised children with – is no longer by her side?

Here’s the bigger question: what does acceptance really mean? It seems to me that once someone reaches that magical stage, they are expected to be OK. They are not allowed to be sad anymore because their grieving is done. And honestly, there is a part of me that doesn’t really want to reach that stage. Because doesn’t acceptance imply that you are OK with the person not being around anymore? And isn’t that a form of betrayal to them? Like you’re prepared to finally let go of what little you have left of them?

To some people, the stages of grief can be a useful roadmap, a guide to let them know what’s coming next. For me, it’s frustrating. I loop back and forth between the stages too much, and I’m ambivalent about the prize. I mean, how likely am I to strive for acceptance if it’s not what I really want?

So today, seven years after Dad left us, I don’t really know where I am with this whole grieving process.

What I do know is that Dad was many things to many people. He was a great marathoner in his youth and he fuelled my own love of running. He was an astute businessman who gave me countless tidbits of financial advice and did my taxes every year in exchange for a bag of sugar-coated almonds. He was both reader and storyteller, dramatist and comedian. He had an appreciation for the simple pleasures in life, and would take his time washing the dishes just so he could watch the sunset through the kitchen window while he was doing it. He adored his dogs and cats, and spent many Sundays polishing his car surrounded by family pets. Along with my Mom, he gave me and my brother the opportunity to grow up witnessing what a loving, supportive partnership should look like. To me and my brother, he was Dad – the best one we could have asked for. And during the brief period of time for which he shared a planet with my son George, he was the most loving, doting Granddad any kid could wish for.

I don’t know what happens to us when we die. I choose to believe that Dad is around somewhere, watching fondly over his grandsons, cheering me on when I run races, clicking his tongue impatiently when I make stupid decisions, and having a good old giggle when I get caught in the rain and wind up with a bad hair day.

Rest in peace, Dad. Someday, I’ll see you on the other side.

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Embracing Autism

If there was a cure for autism, would you use it for your child?

This question was posed to me recently by a non-autism parent, and it really made me think. Before I was an autism mom – indeed, before I was any kind of mom – my immediate instinct would have been to say “Yes! Absolutely! What kind of parent would choose for their child to have a disability?”

Now that I can speak with the voice of experience, my answer to that question is very different. There are some aspects of autism that I would get rid of in a heartbeat. When my son, now eight, has his meltdowns, the expression of anguish in his eyes breaks my heart. If I could wave a magic wand, I would give him the ability to communicate the pain that he feels during those outbursts. I would make the changes of seasons easier for him, I would make Christmas less overwhelming, and I would give him the skills to play with his little brother.

On the other hand, there are things that I would not change in a million years. Someone once told me that my son is very smart “in spite of his autism.” I gently corrected this person by telling her that my son is very smart because of his autism. His mind works in a very unique way. Thanks to his out-of-the-box thinking, this kid can problem-solve rings around the rest of us. He can do multiplication in his head, and this is something that no-one has ever taught him. He just figured it out himself. He sees patterns that are lost on everyone around him: once, when he was putting coloured pegs into a board, I literally had to squint at the board from a number of angles before the pattern he was creating suddenly jumped out at me. If he was given a cure for autism, that incredible way of thinking would disappear.

In the eyes of society, my son has a disability. The education system regards him as having special needs, autism is classified by the medical community as a disability, and the government has granted us a disability tax credit for him. And rightly so: my son definitely needs special accommodations. There is no way he can function in a neurotypical world without assistance. Although I believe he will be capable of great things as an adult, I see the possibility of him being unable to live completely independently. But as much as there are things that he cannot do as well as other people, there are things that he does better. He may frequently take the scenic route from a problem to the solution, but his route can cover a lot more ground, solve problems that no-one else even knew existed, and frankly, the scenic route often has a better view than the highway.

When this amazing boy with his sweet, sweet disposition curls up on the couch with me, wraps his little arms around me, and allows me the privilege of being in his world with him, I feel a love for him that is too big to put into words.

Would I ever want my son to be “cured” of autism? No. Because the challenges just make us stronger, and his autism is a part of the beautiful person he is.