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Dear George

For the last week, I have been participating in the WEGO Health “Advocating for Another” challenge. Life got in the way of blogging over the last few days, so I am a day behind.

Yesterday’s prompt: When I was your age… – Write a letter to your child/ren starting off the with the phrase “When I was your age…” share a story of your own with them.

Dearest George,

When I was your age, I was very much like you. I had the same shyness, the same difficulty with speech, the same awkwardness around people I didn’t know. Learning was difficult for me until someone realized that I was smart but couldn’t learn in the same way as other people.

The world was a different place then, when I was an eight-year-old girl. In the late 1970’s, there was no Internet, so my parents couldn’t Google my symptoms. While diagnoses like autism existed, they were not very common, and not easy to come by unless the doctors knew exactly what they were looking for.

Throughout my childhood, I was sent for tests and assessments, but the most my parents were ever told was that I had “learning disabilities”. No-one was really sure what that even meant.

Like you, I loved books. I remember the summer I learned how to read. It was as if a door to a whole new world had opened to me. My newfound love of reading was both a relief and a source of worry to my parents. On the one hand, I could read, and this is something that everyone wants for their children. But on the other hand, the more I delved into the world of books, the more I withdrew from the world I lived in.

In spite of my rough beginnings, I turned out OK. I graduated high school, got myself a university degree and some post-graduate qualifications. I have a reasonable career, and most important of all, I have my family. You, your dad, and your brother.

You see, even though teachers and doctors didn’t really know what to do with kids like me, I was lucky enough to be part of a loving, supportive family.

My dad was always there for me to talk to, anytime I needed. He was my kindred spirit in many ways, sharing my love of reading, and later, my enthusiasm for running. He was like my rock of support, something that would never waver in the harshest of storms.

My brother and I fought like cat and dog, but in the end, we would have moved the earth for each other. God help anyone who hurt my brother’s little sister.

And my mom, your granny – she was a pillar of strength and support for me. She never doubted that I was capable of succeeding in life, and she helped steer me in the right direction. She worked tirelessly with me, making sure I was doing my homework, reading with me, being my advocate at school.

I often had conflicts with all of the members of my family. There were times when I wanted to run far, far away.

But there was never a time when I doubted that my family loved me and were there for me. When things got stormy, I always knew that the storm would pass and everything would be OK.

This is what my hope is for you. Parents and kids argue. Brothers fight. All of that is part of life. But I hope you know that no matter what, you are loved more than you could possibly know.

Please know that we are here for you, and always will be. I hope that can be at least half the mother to you that my mother was to me.

I love you always,

Mommy

(Photo from Kirsten Doyle’s archive of childhood pictures)

 

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Child, Paper, Scissors

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 25 – Third person post: Write about a memory you have but describe it using the third person. Use as many sensory images (sights, sounds, textures, etc) as you can. Don’t use “I” or “me” unless you include dialogue.

The little girl struggled with her craft project and prayed for the bell to ring. Unlike her classmates, who were happily making creations out of coloured construction paper and bits of glitter, she didn’t really know what she was supposed to do. She didn’t want to ask Miss H, the teacher, for help. Miss H hated her and would only yell at her.

Sighing inwardly, she picked up her scissors and tried to cut a triangle out of a piece of bright yellow construction paper. But the scissors were too blunt – made that way for the safety of ten-year-olds like herself – and they were hard for people like her to use. Sometimes it was hard being a left-handed person in a right-handed world.

The little girl found herself close to tears as she tried to get the scissors to comply. She had a hard enough time at school. She had “learning disabilities”. She didn’t know exactly what that meant, but she did know that she had to work really, really hard just to keep up with her classmates.

Sensing someone standing behind her, the little girl looked up and saw Miss H regarding her sternly. She started to quiver. She was afraid of Miss H. She almost cried with relief when the bell rang, signalling the end of the school day. But when she started to gather up her things, Miss H pinned her to her seat with a glare and said, “You’re not going anywhere until you cut that piece of paper properly.”

The little girl watched helplessly as her classmates filed out of the room. I can do this, she thought. It’s only scissors. I’ll cut this paper and then I’ll be allowed to leave.

Under Miss H’s hostile gaze, the little girl picked up the scissors with her left hand and prepared to cut.

“The scissors go in your other hand!” barked Miss H.

“But I’m left-handed,” said the little girl timidly.

“Not in my class! Now pick up those scissors – in your right hand – and cut!

The little girl tentatively held the scissors in her right hand. She tried to cut but the paper just bunched up awkwardly. The little girl looked up imploringly.

“My mom is waiting for me,” she whispered.

“She’s just going to have to wait! You’re not going until you get this right! Are you so stupid that you can’t cut a simple piece of paper?”

The little girl tried again, but this time she was shaking so badly that she accidentally ripped the paper. Miss H whipped the paper away and slapped a fresh sheet down on the desk.

“Do it!” she snapped.

As the little girl tried desperately to use the hand she was not designed to use, the pile of discarded paper grew. Fat tears started rolling down her face and plopping onto the paper.

All of a sudden a new voice pierced the terrible atmosphere: the little girl’s mother had come looking for her and was witnessing the events with horror.

“Miss H!What is going on?” asked the girl’s mother, furiously.

Miss H, caught off-guard by a mother protecting her young, said something incoherent about acting in the best interests of the child.

The little girl’s mother lowered her voice menacingly and said, “Now, you listen to me. My daughter has a learning disability that you are well aware of. And you have just destroyed five years of confidence-building work in fifteen minutes. I hope you’re happy!”

With that, the mother swept up her little girl and whisked her away to safety.

She took her home and immediately started the process of building up her broken child.

(Photo credit: Kirsten Doyle)

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Why Autism?

“Why do you think he has autism?”

This question is posed to me quite a lot by friends and strangers alike, people who for the most part intend no malice, but are genuinely curious about the origins of George’s autism.

That they are asking the question at all is something that I see as a positive sign. It tells me that increasingly, people are wanting to be educated about autism instead of blindly believing every tidbit of information – right or wrong – that is thrown their way.

Over the years, I have done research on a variety of theories.

Was it vaccines? No, I don’t believe it was. Deep down, I knew from the time George was a tiny baby that he was not on the trajectory of “typical” development. I don’t buy into the dietary theory either, for the same reason. George was exclusively breast-fed for four months, and by then I was seeing some little signs that something was not quite right.

No, whatever happened within George’s brain to result in his autism, it was a done deal by the time he came out of the womb.

Even with that knowledge, the title of Primary Cause is wide open. I have read a couple of recent studies suggesting that environmental factors in utero could have more of an effect than previously believed. As if moms of children with autism didn’t have enough guilt on their shoulders already. But that is neither here nor there.

When I was expecting George, I did everything that was considered by pregnancy gurus to be “right”. I ate lots of leafy greens and took my prenatal vitamins every day. I ate lean protein and avoided foods with a high fat content. Accustomed to eggs “over easy”, I ensured that my eggs were fully cooked, and I did not touch deli meat or anything else that could be a potential listeria risk. I did not touch a drop of alcohol, I stayed away from places where I might be exposed to second-hand smoke, and my body pretty much bullied me (through the magic of the laughably known “morning sickness”) into kicking caffeine to the kerb. I went to all of my OB/GYN appointments and followed the advice of my doctor. I did not take so much as a headache pill through my entire pregnancy. The only tablets going into my mouth were vitamins and Tums.

I don’t think I could have created a better environment for my baby if you had paid me a million bucks. Of course, there is the possibility that fifty years from now, someone will prove that some obscure enzyme in, say, oranges, has been linked to autism. But I think it is safe to say that the prenatal environment is an unlikely candidate for the cause of George’s autism.

Leaving aside other environmental factors like air pollution, there are two other possibilities: genetics, or the circumstances surrounding the birth itself. Or maybe a combination of the two.

When I was a child, I was developmentally delayed. I didn’t talk until I was five, and I had some motor skill delays. My body was physically capable of doing anything my peers could do, but the communication between my brain and my muscles was out of synch. It was clear – especially in the early years – that I had some kind of learning disability, although I was never formally diagnosed with anything. As I navigated my way through childhood and adolescence, I was able to compensate for my learning difficulties by simply thinking in a different way and leveraging areas that I was strong in. But as my academic performance got better and better, my social awkwardness and anxiety among people became more and more apparent.

To this day, I suffer from social anxiety, although in general, I have found ways to adapt and mask it so that people don’t really notice. I’m not so much a stickler for routine, but once plans are made I get very uncomfortable – almost panicky and kind of, well, spectrummy – if they are changed. Although I am now fully verbal – sometimes, downright talkative – there are times, usually when I’m stressed – when I lose the ability to communicate through speech. It’s as if the words get lost somewhere between my brain and my mouth.

Am I on the autism spectrum? I don’t know. I have never been for screening, and frankly, I don’t really see the point. But if I were to learn that I have Aspergers, I would not a bit surprised. When I look at the way George has evolved through his early childhood, and the way he is at this point in his life, I do see a lot of parallels with my own early years. So, genetics? It’s a strong possibility.

The other possibility is that something happened to George’s brain while he was being born. For the most part, my labour was pretty standard. Everything happened more or less when the Medicals said it would. When I was in the thick of contractions, I heard someone use the word “textbook”. When the time came to push, though, the going suddenly got a lot tougher. Even though the baby was perfectly positioned for birth, no matter how hard I pushed, nothing budged. The Medicals kept telling me to push harder, push harder, but I just couldn’t do it. After what felt like an eternity but was probably only a couple of minutes, the Medicals gave me an episiotomy (if you don’t know what that is, look it up, because I ain’t describing it here). Once that was done, I gave one more almighty push, and an eternal second later, I was rewarded by the sound of a baby crying.

Here’s the thing, though. While I was pushing to no avail, the baby’s heartbeat – usually in a range of 130-150 beats per minute – dipped to below 40 beats per minute. Only for a couple of seconds, mind. Like a momentary blip in the radar. But could those couple of seconds have been enough to alter the wiring in my baby’s brain?

In the end, I suppose it doesn’t really matter. George has autism, and knowing the cause with crystal clarity would not change that.

No matter what the cause, George has autism, and I love every inch of him for who he is.

(Photo credit: http://www.flickr.com/photos/macbeck/4146730230/)