Tag Archives: love

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)

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Painting Pictures With Words

30 Apr

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 30 – Word Cloud: Make a word cloud or tree with a list of words that come to mind when you think about your blog, health or interests. 

When I read this prompt, the first (OK, the only) thought in my head was, “Eh?” Although I have seen the term “word cloud” bandied about in various places on the Internet, I’ve never paid attention to what it might be. I was visualizing a mind-map kind of thing, and I was wondering how on earth I would come up with something like that. It seemed to be a highly visual concept, which would imply a kind of creativity completely alien to my way of thinking. While I think in pictures, I’m hopeless at actually creating them in any artistic sense. I can only paint pictures out of words.

When I Googled “word cloud” (because, you know, Google knows everything), I discovered that this is exactly what a word cloud is: a picture made out of words. All I had to do to make my picture was import a list of my blog tags into this online tool, select a few options, and click the button. It turned out to be lots of fun: I experimented with different shapes and colours, and finally settled on a picture that represents what my blog is all about.

When it comes down to it, Running For Autism is really about two things. Hope and love.

I think my word cloud is a perfect representation of that.

Beyond The Stars

29 Apr

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 29 – Six sentence story: In this day of micro-blogging – brevity is a skill worth honing. Can you tell a story and make it short and sweet? What can you say in six sentences?

When my son George was diagnosed with autism, I didn’t really know what it meant or what he would ultimately be capable of.

I didn’t know what it would mean for my family, or for George’s sibling relationship with his little brother.

Since then, we have discovered that George has potential that reaches beyond the stars, and that all we have to do is help him get there.

We have discovered that he has a big  heart with an infinite capacity for love, and that he and his brother will be best friends for life.

There are challenges, and I worry about what the future could bring for my boy.

But I believe in him absolutely.

(Photo credit: http://www.flickr.com/photos/gsfc/5161800961/. This picture has a creative commons attribution license.)

The First Date That Never Ended

28 Apr

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 28 – The first time I…: Write a post about the first time you did something. What is it? What was it like? What did you learn from it?

The first time I took a man home with me on the very first date, I ended up marrying him. Not on the same day, of course – the marrying part took about ten years. But right away, I just knew that this was the man I wanted to be with forever.

The beginning of our romance had a whirlwind quality to it, much like a fairytale romance. The fairytale began the moment we first laid eyes on each other.

It was a balmy afternoon late in the summer, and I was sitting on a rock in the park trying to bring my life into perspective. I was reeling from a recent ugly breakup: the man I had been dating for six months had conveniently neglected to mention that he was married. I was feeling depressed, lonely, and utterly foolish.

Something made me look up, and I saw a man heading towards me. I had never seen him before, but he walking in my direction with purpose, as if he knew me. I wondered if he had mistaken me for someone else. He sat down beside me, gazed at me for a few seconds, and then said, “You have beautiful eyes.”

I looked at this man and saw a whole new future open up before me. We stood up, and hand in hand, we went for a walk through the park.We found ourselves on the patio of a restaurant, eating, drinking wine, and sharing our life stories with each other.

It was perfect, that first date. When I let him come home with me that night, it was simply because neither of us wanted the date to end.

Although almost eleven years have passed since that night – eleven years that have seen many trials and tribulations, many joys, the births of our two beautiful children, tons of parenting adventures and our introduction to the world of special needs parenting,  and eventually, our wedding, neither of us feels that the first date ever really ended.

(Photo credit: Kirsten Doyle)

The Good And The Bad

26 Apr

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 27 – 5 challenges, 5 small victories: Make a list of the 5 most difficult parts of your health focus. Make another top 5 list for the little, good things (small victories) that keep you going.

Autism can be a very complicated thing to live with. Its manifestations change from day to day. One day, my son will be able to tolerate loud noises but a small change in routine will send him into meltdown. The next, we’ll be able to turn his entire routine upside down but anything louder  than a whisper will set him off. Different strategies work for different kids on different days, and everyone you might see guidance from is convinced that their opinion is the right one.

The things I find most challenging about being an autism mom don’t really have to do with the autism itself. Whatever might be going on with my child on any particular day, I just deal with it. Sometimes it’s hard, but I always know that I’m doing my best, my son is doing his best, and at the end of the day we’ll all survive.

My challenges tend to come from sources other than my son and his autism. I list them in no particular order.

  1. The judgmental critics. It’s a moment every autism parent has lived through at least once. You and your child are in a grocery store, which let’s face it, is a mecca for sensory overload, and your child is getting more agitated by the second. You throw things into your cart at quickly as you can, but just as you get to the checkout, your child reaches his breaking point and explodes. As you are trying to calm him down, some snarky stranger loudly proclaims, “What that child needs is a good hiding.” I once heard someone say (referring to me), “If that mother was doing her job properly, this wouldn’t be happening.” Like I’m not already carrying around enough angst with me. With my social anxiety, I’m not great at the quick comeback, although I’m definitely better than I used to be.
  2. The third-person talker. These are the people who will talk about someone who is present as if that person were not in the room. The chances of this happening increase exponentially if the subject of conversation happens to have autism. I get it all the time. “Would George like a hamburger?” they will ask. My answer always seems to throw them a little: “Ask him,” I say. Yes, it is true that George is not the world’s greatest talker, and may not respond to everything that is said to him. But, you know. At least give the kid a chance to try. If he struggles to answer, I will help him.
  3. Guilt. I was educated at a girls-only Catholic school run by nuns, and I am married to an Irish Catholic man. I can therefore say with some authority that the Catholics turn guilt into an art form. And some of the guilt that I feel as a special needs parent (hell, forget special needs – just as a plain old parent) almost makes me think I should just convert. I feel guilty about everything. Did the Taco Bell I ate during pregnancy cause George’s autism? Did I give him enough affection as a baby? Am I paying enough attention to my other son? Did I get too mad at George when he tipped over the laundry basket?  The list goes on and on, and my guilt makes me constantly second-guess myself when I should just be following my parental instincts.
  4. Time. Time very often seems to be my enemy, so much so that I sometimes regard it as a person. Time with a capital T. No matter how much I try, Time seems to run away from me. At the end of each day, there is always something that remains undone. Parenting is my absolute number 1 priority, so my kids’ needs are always taken care of. But I tend to let other areas of my life slip occasionally, and that is detrimental to my physical and mental health.
  5. The Internet. When George was diagnosed with autism five years ago, the first thing I did when I got home was Google autism. I obsessively read web page after web page. Every link that I clicked on seemed to have some information that flatly contradicted something I’d read somewhere else, and in the end my brain was hurting from information overload. I was overwhelmed by not knowing what information to trust. Since then, I am wiser in my use of the Internet and I have learned, for the most part, how to tell the good information from the noise. But the Internet, with all of its gazillion theories about the causes of autism, can still hinder more than it helps a lot of the time.

In my house, there is no such thing as a “small victory”. Every single accomplishment, all of the positive things in our lives – are massive, big things. That’s the way it often is in special needs families. We tend to place extra stock in things that other families take for granted. And as hard as it can be to live with autism, there are many things that I am grateful for, that enable me to keep chugging along even at times when I just want to cry.

  1. Love. Love really does make the world go around. Out of all the challenges my son has, lack of affection is definitely not one of them. Both of my sons give the best hugs that I can carry around with me all day. My favourite moments are when my boys somehow manage to squeeze onto my lap together to give me a hug. I sit there, with my arms full of squirmy, giggling kid, and never want the moment to end.
  2. Running. Yes, running keeps me sane, and when something stops me from doing it – like illness or injury – depression starts to creep in. The fact that it keeps me in good physical health is almost a by-product of running. My prime reason for doing it, along with raising funds for autism, is to keep my mental health on an even keel. I struggle with mental illnesses like depression and anxiety, and there’s no better way to combat my darker moments than a good long run. I am stubbornly resistant to using medication to deal with my issues, and running acts as a decent substitute for chemicals most of the time.
  3. Therapy. It has been said that running is cheaper than therapy, and while that is certainly true, I actually do need both. The therapist/client relationship is a very strange one. It involves the client placing complete trust in someone they actually know nothing about. I have been going to my therapist for a little over a year now, and it has taken me almost all of this time to build up my trust to a level where I can really open up during my sessions. Sometimes the sessions are very hard and they make me feel all weirded out for a while, but the truth is that once a week, I get the opportunity to talk without reservation in the sanctuary of my therapist’s office. I can say whatever I like and there will be no judgment or anger.
  4. Writing. I am somewhat inept as a verbal communicator, and I experience high levels of anxiety in social situations. When I am talking to other people, I hold back a lot, not only because of my natural shyness, but because my brain actually doesn’t work well during conversation. I can formulate a completely coherent thought in my mind, and even mentally phrase how I want to say it, but when it comes time for me to speak, my words get lost somewhere between my brain and my mouth. With writing, that doesn’t happen. I truly have a voice, and I treasure the opportunities to speak my mind on things that are important to me.
  5. The Internet. The Internet is both a blessing and a curse. Despite the evils described in my “bad” list, the Internet is a haven of sorts. I belong to two Internet support groups – one for moms who have suffered pregnancy or infant loss, and one for parents of children with autism. Both of these groups are places where I can vent my concerns, ask for advice, or celebrate good news. Some of my best friends are people who I have known online for a long time, but have never met in person. Here’s the wonderful thing about the Internet: no matter what I am going through on any particular day, I will always be able to find someone who knows, at least to some extent, how I feel.

beauty without limits

21 Apr

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 21 – Health madlib poem: Go to http://www.languageisavirus.com/cgi-bin/madlibs.pl and fill in the parts of speech and the site will generate a poem for you. Feel free to post the Madlib or edit it to make it better.

When I read this prompt, I thought it would be easy. It turned out to be a lot more challenging than I had expected. The Madlib gave me a poem that was beautiful in some parts, nonsensical in others. I had to throw out the first couple of attempts, and I finally got something that I could edit into something I could like. As tough as this exercise was, it was a lot of fun. Everyone should give it a try!

quietly i have never run, softly beyond my heart
my son, your smile is full of love
in your most happy tears are things which surprise me,
on which i cannot speak because they are too deep

your beautiful look profoundly will move me
though i have tried to understand
you see things in ways that are beyond me
exploring your world thoughtfully, intensely

your potential reaches the stars and sun
i move my world for you so that you may fly
i cross the ocean for you to know no limits
your path is different and the road is challenging

nothing gets in the way of your growth
the strength of your shy wonder: my child
i smile at the beauty of your blond hair
your blue eyes bright and sparkling with life

i would run to the ends of the world for you
so the world can be yours
you are amazing: son, brother, friend
your heart is pure, your smile lights up the sky

By Kirsten Doyle with a little help from e.e. cummings

Stopping To Smell The Roses

30 Aug

Look what I have...

For a number of reasons, I find my morning commute to be far more palatable than the afternoon commute. I rarely wait more than three minutes for a bus to the subway station. Because I board the subway at the end of the line, I always get a seat. The morning commute is faster and generally more pleasant – or at least, less unpleasant.

In the afternoon, I am tired and cranky, and my head is full of work-related stress. I am forced to squeeze myself onto an already jam-packed subway train, and when I emerge at my destination, I have to spend seventeen geological eras waiting for a bus home. Because my chances of getting a seat on either the subway or the bus are less than my chances of being ordained as the Pope, my afternoon commute involves me being on my feet for well over an hour.

By the time I got onto the bus yesterday, I was dying of thirst and my head was pounding. I stood there on the bus, one squashed sardine among many, feeling hot and grumpy. I never regard my commutes as fun, but yesterday, I was even more fed up than usual. I stared at the floor for the entire thirty minute bus ride just to avoid accidentally catching anyone’s eye. That’s how much of a mood I was in.

As the bus pulled up to my stop, I breathed a sigh of relief at having made it home while simultaneously lamenting the fact that my evenings are always filled with chores and running around after people.

Yes, I was feeling pathetic and sorry for myself. I admit it.

But then… something amazing happened.

As I stepped off the bus, I saw my husband and my younger son James sitting on the grass near the bus stop. Thinking I was seeing a mirage, I rubbed my eyes.

James jumped up and yelled, “Mommy!” The sun shone on his curly blond hair and illuminated his entire being. I swear, the kid looked like an angel – a glorious shining light that swept away every ounce of negativity in me. He ran towards me with his hands behind his back. The smile on his face as he reached me could have split his face in two as he pulled his hands from behind his back and thrust a bunch of red roses at me.

I spent a few minutes sitting there on the grass with my husband and my son, basking in the sense of love and belonging, and literally stopping to smell the roses.

I think I will regard my afternoon commutes with a lot less angst from now on. Because look at what I have waiting for me at the other end.

(Photo credit to the author.)