My 2 daughters are in mainstream kindergarten now. They go to ballet class, jazz dance class and perform at school concerts. We have play dates, go out to restaurants, there’s lots of laughter, hugs and kisses everyday. Essentially the typical life I never dreamt I would have. An autism mum asked me recently, what is life like now? I could see the wistfulness in her expression, of wondering what life is like with a typical child. I get this question often actually, by parents who wonder about life on the ‘other side’, a life where autism doesn’t dictate your every move. A life where autism doesn’t resonate with every heartbeat.
And I tell them “Life if good.” For there’s no 2 ways about it, our lives are immeasurably improved now. An autism father told me recently “When you recover your child, you don’t just recover the child. You recover the whole family.” And he’s right.
I can never ever go back to the original version of myself. I wish I was once again as upbeat, carefree and naive as I was before. Before the word autism and the words that comes along with it became part of my vocabulary. I long to be blissfully ignorant, but I’ve seen too much and I’m still haunted by what we’ve been through. Once you’ve been an Autism parent, it is pretty much impossible to go back and be the version of yourself you thought you were meant to be. At least, for me this is the case. I call autism many things, most of them unprintable. A friend calls autism ‘the boulevard of broken dreams’. I hear ya……
Once, I thought what lies in the future was only special needs school, a lifelong disability where my girls could never be independent or experience the joys that other children have. When I was pregnant with May, I thought that motherhood was supposed to be fulfilling. Instead what I got was a blaze of pain and misery that started on the day May was born.
I’m slowly picking up the pieces from my broken boulevard of dreams. Dare I say, I might even get a chance to be the earth mother goddess I once dreamt off? I vowed to be the best mother to my girls, yet I felt that I failed them. My ultimate vision of motherhood was holding both my girls in my arms and felt perfect contentment. That vision was viciously stolen from me by Autism. I felt cheated out of motherhood. Where was the happiness, the contentment, the joy, the sweet kisses and hugs I was due? Though I get the joy and kisses by the boatload now, what about the 4 years of broken dreams and lost hugs?
Yesterday, a father recounted to me how his son finally called him “Daddy”. After 4 years of silence. His wife is still waiting to hear the word “Mummy.” I hope it will be soon, for they are immeasurably kind with hearts of gold. They moved heaven and earth to get the therapies their son needs and they deserve all the happiness in the world.
It still hits me to the core when other parents tell me of their chidren’s triumphs as well as the stories of their children’s diagnosis. Whether our children regressed into Autism or whether it was early onset, we still feel the loss and mourn the child that we thought we would have. But within the grief, we also see the child that we have now. Still perfect, still beautiful. Just a different kind of perfect.
May had sensory integration disorder ever since she was a newborn. Though it went undiagnosed till years after, Paul and I instinctively knew that she was overwhelmed and hugely affected by auditory, visual and tactile stimulation. The sounds in a shopping mall, the hectic shuffle in a gerai mamak and the need for tight swaddling and continuous rocking were all indications of a sensory disorder. We never had the chance to do Sensory Integration therapy, we were so caught up with ABA and biomedical treatments. It left very little time for anything else.
There was no specific thing that we did to address her sensory issues. Generally the biomedical treatments bit by bit reduced her sensory disorder. Nowadays, if May was disturbed by a particular noise, she’d probably cover her ears with her hands. Even then, it was only if it was too loud. She can wear all kinds of clothes and she’s fine going to the busies and noisiest mamak stall in KL.
A couple of weeks ago was the school’s Open Day concert. Both the girls have been practicing their dance moves and songs to sing. I was a bit nervous for them, for this is May’s first ever public performance and concert. How will she react to the stage, the crowds of expectant faces looking at her, having to wait in line for her turn, the loud speakers blaring out the music, the emcee’s announcements booming out load, the heat, the noise, the crowds…..my worries were endless.
Last year, her little sister Min performed in the concert. Unfortunately, she was terrified and was afraid to go on stage. She kept looking at us and wanting to come to me. But the teachers managed to persuade her to go on stage. Whilst her classmates danced and followed the moves, Min just stood on stage, teary-eyed, sniffling quietly, trembly-lipped, looking utterly miserable and sucking on her thumb. It seemed like hours when my little baby was on stage, but it was probably for only 5 minutes. Nonetheless, we told her how brave she was. For even though she was terrified, she didn’t break down totally.
This year, I was afraid the same thing would happen again. But Min would happily rehearse her dance steps and sing the songs at home. I was amazed when one day both girls started singing Michael Jackson’s Heal The World. For the theme of the concert this year was The Environment.May took everything to heart and talked about how we should recycle, how people are destroying the planet and how we should take care of the environment. It was heartbreaking for me to see my 5 year old daughter not being able to go to sleep because she was worried about the environment. Most of her classmates didn’t seem to feel too deeply about it, they just sang along to the lyrics.
Both girls did incredibly well at the concert. Min was dressed as a seahorse and performed fabulously. She was excited and happy all day long and there was no trace of the nervousness and fear from the previous year. And May did 3 performances and sang 2 songs! She was dressed as a tiger (I always said she was a tiger baby!). When they first started rehearsing for the concert, her teacher remarked that she refused to participate at times. We deduced that the music was too loud plus it was a very fast and aggressive beat that she isn’t used to.
When May was singing along with her classmates to Michael Jackson’s haunting Earth Song, you could see that she understood the words and her emotions spilled out. You could see the sadness and worry in her face. I worry that the negative thought process would come back, we surely didn’t need nightmares about environmental destruction haunting her dreams at night.
But come concert day, she was dancing to Madagascar’s “I Like To Move It, Move It” with no hesitation. And she was totally at ease and happy throughout the whole day. Paul and I whooped, hollered, cheered and clapped for all we were worth. The pride I feel for my 2 fabulous girls still resonates to this day.
I don’t think the Earth Mother Goddess version of me will emerge anytime soon. The version that I am now is who I’m meant to be, a trailmix of exhaustion, regrets and disappointments streaked with a smattering of truth, pride and joy. Compared to before, life is good. We still have our challenges and troubles, we still bitch about the unfairness that life handed us, how we always feel that we’re never ahead of the game. Instead we’re continuously lagging behind and playing catch-up. But having said that, there’a a big chunk of appreciation and relief for all that we have now. It may not be the perfect life that I thought I would have. But it’s a different kind of perfect…..
HI, I had recently suspected that my nephew has the same problem with your daughter after I had read through your article. Could you please tell me where should I take him to and where do i start to help him? I would be appreciate if you could help. He is just 3.5years old. Thanks