Archive | Empathy RSS feed for this section

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)

Autism Through A Child’s Eyes

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

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

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

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

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

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

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

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

Yes, I cried.

(Photo credit: Kirsten Doyle)

Campbell: A Story Of Kindness

15 Dec

Tazz and Campbell

Once upon a time, I had a child and called him George. I had all kinds of hopes and dreams for that child. We were going to  take him on the kinds of outings kids love, and for his birthdays, we’d invite his friends to come too. We would delight in watching him grow from babyhood to childhood as he ran and jumped and played with his peers; we would laugh at the funny things he said as he was learning to talk; he would make cookies with me and we’d go for picnics at the zoo. When he became a big brother he would take pride in helping with the baby.

One day, when George was almost four, the hopes and dreams crumbled as a doctor gave me the news that George had autism. As I sat there in shock (strange really, since I’d known for a year that something was wrong) I did not yet know that at some point in the future, I would come to accept a new kind of “normal”, that my hopes and dreams would take on a different, but still meaningful form, and that while the journey would take us on the scenic route, we would still see many wonderful things along the way.

It hasn’t all been a cakewalk. There have been hard times. I have had to learn how to restrain my son with my bodyweight to stop him from hurting himself. Speech is still sporadic enough that we celebrate every single word, every single sentence. It saddens us that George does not have friends, preferring to play by himself.

One of the hardest things to deal with has been the reactions of other people. We get rude stares in grocery stores, and complete strangers tell us that what our child needs is “a good hiding”. When people see George having difficulty in a public place, they jump to the immediate conclusion that he is misbehaving. Don’t get me wrong – sometimes he is. He may have autism, but let’s face it – an eight-year-old boy is an eight-year-old boy. Most times, though, George is having trouble with the brightness of the florescent lighting, or the overabundance of sounds, or all of the conversations going on around him that he does not know how to filter.

I sometimes wish for a magical potion, a Perfume of Arabia that I could sprinkle onto people to open their eyes and help them understand.

In the absence of a Perfume of Arabia, the best I can do is write about my experiences and hope that it will make a difference to someone’s life. Like it did to a reader, Tazz, who along with her dog Campbell, had an incredible encounter with a special needs child. With Tazz’s permission, I am sharing the story here. I’m not even going to bother rewording it. Tazz’s words can speak very well for themselves.

“One thing I learned is to never ever judge what I see a child doing, because for all I know there may be a problem I do not know about. Turns out this info came in very handy for me not long ago. There is a family who are members of the church I am currently attending part time. Their son has some kind of a problem that they have not quite diagnosed yet. However, it causes him to sometimes have horrible meltdowns. I was walking down the hall one day during Sunday School time going back to class from the bathroom when from a room down the hall a ways I heard the most heartbreaking crying I ever heard, and knew it was this little boy having another hard time. His mother was doing all she could to calm the child. I followed my heart and took a chance. I softly knocked on the door, and asked if I could help. She had come to the door with the melting down child in her arms, and when he saw Campbell his screaming stopped. I mean like turning off a switch. I asked if I could bring Campbell in and visit for a minute. She agreed and we all sat on the floor with the little boy calming down and petting Campbell. They are now looking in to the possibility of getting a therapy dog for this child. Campbell has come to rescue this child a couple more times since that day. Because now if we are there, and this child starts to have a problem they come and get me from where ever I am and I happily go and help. Well, Campbell helps.

Is this not the most amazing story? Tazz had an instinct and she followed it. She and her dog were exactly what that little boy and his Mom needed. We special needs parents all need people like this – people who don’t necessarily know the circumstances, but who open their hearts to people who really need it.

To Tazz and all of the people like her, thank you. Thank you for being there. Thank you for being you. You restore my faith in the goodness of human nature.

This week’s Indie Ink Challenge came from Head Ant, who gave me this prompt: What would your proverbial “perfumes of Arabia” take care of? Fiction or non-fiction.
I challenged lisa with the prompt: Write about anything you like, but include the following: cotton candy, a dog, and a broken-down taxi.

Photo credit to Tazz. This picture was taken at an event to remember the victims of domestic violence.

A World Of Anguish

5 Oct

CRASH!

The entire house seems to shake as my seven-year-old son screams and bangs his head on the hardwood floor. He raises his head to bang it again, but I reach him first. I have no idea what has triggered this meltdown, and right now, I don’t have the time to try and guess.

My son is long and lanky: he is far too big for me to carry, but I have to get him away from the hardwood. Yes, I know what the so-called experts keep saying. When a meltdown happens, you have to ignore it. Paying any attention to him while he’s melting down will reinforce the behaviour.

Yeah, well, while I’m ignoring the meltdown, my child could be giving himself a concussion. This frantic headbanging isn’t anything I haven’t already seen. There are so many dents in my drywall that the inside of my house looks like a giant golf ball.

I half-lift, half-drag my son into the carpeted living room. I grab cushions and blankets – anything soft that’s within my reach – and I pad our immediate surroundings to stop my boy from hurting himself. Using a technique borne of experience, I wrap my arms around him and use my body weight to keep him still, to keep him safe.

While all of this is happening, he is kicking and screaming. They are not screams of anger, but of frustration. They are the screams of a child who is locked inside his own head and cannot find the way out. He looks directly into my eyes, and his expression is one of desperation. I am reminded of a caged animal who wants nothing more than the ability to run free.

As I look at my beautiful child, as I see him in such anguish, I want to cry. I fight back the tears. I have to be strong right now. Later on, when this has passed, I will have my chance to cry.

In my mind, I start talking to Autism as if it were a real person and not merely the name of the condition affecting my son.

“Damn you, Autism. There are times when I don’t mind you so much. There are times when I am completely comfortable with your presence. Hell, sometimes I even like you. But at times like this, Autism, I hate you like you wouldn’t believe because of what you do to my child.”

My son and I lie there on the living floor for what seems like ages. Slowly, so slowly that it’s barely perceptible, the screaming becomes less intense. The weight of my body provides him with the physical pressure he needs to become grounded again. And eventually, the screams stop altogether and I can loosen my hold on him. We curl up on the couch together. The silence is punctuated by an occasional hic.

I look at my child’s angelic face and tenderly smooth my hand over his hair. His eyes are closed and I think he’s gone to sleep. But then he opens his eyes and a special look passes between us, a look that no-one in the world apart from the two of us would ever be able to interpret.

You know what it’s like, he says to me with his eyes. Sometimes you can see into my world.

Yes I can, my eyes say back to him. But it’s only because you trust me enough to let me in.

And secure in the knowledge that he is not alone, he falls asleep in my arms.

This week’s Indie Ink Challenge came from FlamingNyx, who gave me this prompt: Describe “that” look you got in a secret moment of knowing. That look that no-one in the world would understand and can only pass between you and “that” person. 
I challenged The Drama Mama with the prompt: Tell the story of a policeman who died in the line of duty, from the point of view of his eight-year-old child.