When I was a little girl, I wanted to be a writer.
My bookshelves were bursting with myths and legends, tales of epic journeys and magical enchantments and warriors and warlocks and princesses; talking animals and terrifying villains. I read many of them over and over and would always think, when I closed the covers, how wonderful the author must have felt to have created such a thing.
I started writing my own stories, on sheets of rough paper, taped or stapled together. I would write the title first, then the author – me – beneath, then carefully index the chapters, number the pages and sometimes, if feeling really enthusiastic about the content, provide rave reviews for the back. I showed my parents, my friends, my teachers. People nodded and smiled.
I grew up, and kept writing. I studied English and French literature, and kept writing. I studied journalism, and kept writing. I got a proper job, and kept writing. Then I had a daughter, and stopped for a while. When I came back to it, I wrote furiously for several months, then realised the embarrassingly semi-autobiographical nature of the novel I had crafted, and put it aside. I got married, and got divorced, and had another child, and got married again.
There wasn’t very much time for writing, let alone for cudgeling my exhausted brain into thinking of something interesting to say.
Then my elder daughter Grace was diagnosed with Asperger’s Syndrome. It had taken us years to find out what it was that was ‘off’ – what the teachers saw, and wondered about, and what her peers saw, and walked away from, and what I saw, and thought was just my eccentrically lovable child. Finding out that my daughter had autism was like discovering she had been living behind glass for 8 years and that I had been oblivious to the sound of her banging her fists on it.
We were sent off with a label, and little support. Grace started to be bullied at school as she grew older and her differences became more apparent and other children were drawn to her weirdness and capacity for combustion when they pressed her buttons. They found all her buttons.
Grace spent a lot of time crying. I spent a lot of time crying. We both felt very alone.
Then one day on the way to work, I pulled out my notebook and emptied the thoughts in my head onto the pale blue lines. I scribbled and scribbled, oblivious to the other commuters, thinking that if I wrote everything down then I might be able to make sense of it. I came home and said to Grace: “Shall we write about what’s happening to us?” And Grace said: “Yes. Please tell them what it’s like.”
So I wrote. I wrote a blog and called it Grace Under Pressure. I wrote about how it feels to be the parent of a child with autism. I wrote about the things I was learning and about how much I realised I still had to learn. I wrote about Grace’s marathon attempts to fit in and understand her own limitations and learn to cope with the limitations of classmates who had no sympathy or understanding. I wrote about running a marathon myself in order to raise awareness among those who had no sympathy or understanding of autism.
People started reading the blog. Then more people read it, and more. Eventually, someone said: “You know, you should really think about making this into a book.” A publisher called Little, Brown agreed.
My book is not the book I ever thought I would write. But it is the kind of book that I used to read. It is the tale of an epic journey, and a magical enchantment, and a courageous princess. I am very proud of the princess, and I am grateful to her every day for letting me tell her story and for taking me with her on the adventure that changed our lives.
Grace Under Pressure: A Girl with Asperger’s and her Marathon Mom, by Sophie Walker, is published in the United States by New World Library, and in the UK by Little, Brown (Piatkus).
**Enter to win a free copy of Grace Under Pressure! Comment on this post for a chance to win — we will be choosing a winner on Friday, December 13th! **
This is an original post by our writer in the UK, Sophie Walker.
The image in this post is credited to the author.
Someone recently asked me what was the hardest part of being an autism mom. I had to think about this for a while, and when it finally came to me, the answer was a little surprising. The hardest part of being an autism mom is not the meltdowns, the speech difficulties, the stares and rude comments from strangers, or the lack of sleep. It’s not the heartbreaking desperation that my child experiences when he cannot communicate something, and it’s not the hurt that my younger son feels when I have to put his needs aside to take care of his brother’s autism-related crisis. It’s not my own exhaustion and more-than-occasional sense of being overwhelmed.
To me, the hardest part of being an autism mom is the infighting that happens within the autism community.
I already use so much energy advocating for my child in the school system, making sure he has the services he needs, and doing my part to raise awareness so that he will live in a world where he is treated with dignity and respect. I really shouldn’t have to be defending my actions and choices to autism parents who think their way is the only way. (more…)
I’d like to introduce you to Alex Spourdalakis, a 14-year-old boy who lives with his mother, Dorothy. Alex is not like most 14-year-old boys. He has severe autism with cognitive impairment, and he is non-verbal. Like many kids with autism, he experiences periodic disruptions to his sleep.
A few months ago, Alex’s sleep disturbances got serious enough for him to be become agitated and aggressive. This coincided with the onset of severe gastrointestinal symptoms, like constipation alternating with diarrhea. In the middle of February, his mother took him to Gottlieb hospital in Illinois, USA. He was in excruciating pain, which manifested as aggression.
For 13 days, Alex was kept in locked restraints, only being released to use the bathroom. Bear in mind that this kid was suffering from constipation, diarrhea and vomiting. He tried to communicate when he was getting sick by screaming, but staff frequently didn’t release him in time and he would have to lie in his own vomit for several minutes at a time. He would be allowed to use the bathroom, and then he would be wiped down and returned to the restraints.
During this time, Alex was given a cocktail of drugs that were not helping, and repeated pleas by his mother for his allergies to be considered fell on deaf ears, even as his skin became raw from allergy-induced dermatitis. He was not formally admitted to the hospital, nor was a proper treatment plan devised for him.
Are you horrified yet? Brace yourself, because the story continues. (more…)
My mum used to say to me: “Don’t wish your life away.”
Nowadays I sometimes feel as though that’s all I do. To be more specific, I’m organizing my life away.
With four kids, my job, my husband’s job, and the diaries of both our ex-partners to co-ordinate, there are often times when I look up from the calendar and realise I’ve scheduled myself right out of the current school term and into the next-but-one.
This can be particularly painful when I have to re-adapt to not being in warm late summer and that campsite in France but instead in bleak mid-winter suburbia. January is a bad month for making wishes and looking away from the here and now. “I want to be thinner/fitter/better employed/better loved by X month,” we tell ourselves, shading our eyes as we scan the horizon for that magical time when everything will be perfect.
The temptation to hurry past moments of disappointment or frustration is immense, and only human. I feel this keenly as the mother of a child with autism. School is a big issue for us, and the day-to-day of persuading my child to go and, once there, to participate, is exhausting. (more…)
The author holding her son after completing the Best Buddies 5K in August 2012.
I hold my breath as my five-year old son zooms around the playground. There are children laughing and squealing all around us. Games of tag and the sound of ring-around-the-rosey sung in unison fill the evening air.
My son continues to run in circles as if he is the only child on the playground. Another child approaches him and catches his attention. He stops. My heart starts pounding and I convince myself to wait and watch before jumping in to help him navigate this brief social encounter. It’s over as quickly as it began and he is back to zooming around the playground.
Some of the moms and other children begin to stare. Most smile politely and continue on with what they were doing and I sink back into my seat, wondering what the future will hold for my son. This is a typical day in the life of my five-year old son who is diagnosed with autism and cognitive delay. While my other typically developing five-year old son is eager to play with friends on the playground, my son with special needs is satisfied to stay within his comfort zone of isolation.
Could you imagine a world without friendship? I certainly could not.
So one day I asked myself if my son is truly happy playing alone with only brief and superficial social encounters. Doesn’t he really crave friendship like his brother? Although my son is limited verbally, a single conversation was enough to clarify that he did indeed want to make friends. As his mother, I was determined to help him do it. (more…)
Lauren with her son adopted from Hong Kong on the day the adoption was finalized in court.
There is no denying the stress and challenges that often accompany living life with a disability or chronic illness. As a mom to a child with significant special needs, I am keenly aware of those daily challenges. With the support of family, however, many children born with special needs go on to live healthy, meaningful lives. But for children around the globe who live in orphanages and lack access to a family unit and good medical care, being born with special needs most often means a life-long sentence of institutionalization and neglect. My son was almost one such statistic.
In 2011, my family and I traveled to Hong Kong, China to adopt a four-year old child with autism and significant cognitive delay. After living in two different orphanages, international adoption was his last option before being sent to a mental institution to live out the remainder of his life.
UNICEF estimates that there are approximately 143 million orphaned children around the globe. There are no hard statistics on how many of those are special needs children. (more…)