(My first entry on autism.beauty.combines)
‘When tomorrow comes…
I’ll be a better parent and spend more time with my children,
and put my family before my work.
I’ll eat less junk food,
and start exercising like I know I should.
I’ll spend less time out with my friends,
and more time talking to my [husband].
I’ll make [more] effort to call my [parents],
and learn to be more patient with others.
I’ll learn to fly like I always wanted to,
and realise anything is possible, if I work hard to make my dreams
I’ll do one selfless act for a stranger each day,
to help them world become a better place.
I’ll only tell the truth,
even if ti comes at a cost to myself, because that’s the right thing
But not today.
Today I have too many bills to pay,
today I have too much extra work I need to finish.
Today the kids have been misbehaving and I need a [drink] to calm
Today I just don’t have the time.
But when tomorrow comes,
I’ll do all the things I know I should and everything will be better.
Tomorrow I’ll make time for everything to get done,
because deep down I know that anything I didn’t do right now, isn’t
going to happen,
because tomorrow never comes.
But not today.’
(O’Connor, P, 2004, When tomorrow comes. A journey for today)
I read this book when I was still in university, and immediately, the theme in the book resonated with me.
I have always loved reading and writing, and have even toyed the idea of publishing my own book one day. That’s the elusive thing about life. When B and I got married, we held all the hopes in the world on how our lives will pan out. Nobody gave us a manual on how to be a good wife and husband, and definitely nobody gave us an instruction booklet on how to be a great parent.
Through our marital and parenting journey, we’ve always tried our best to hold it all together. Like any couples, we have had our ups and downs. Being stubborn and opinionated, we would ensure our ‘voices’ got heard loud and clear. I vividly remember this argument we had in our younger days, B said aggressively that I always wanted to win whenever we fought, and I retorted back, “What’s the point of fighting if one does not want to win the fight?” Thank goodness, I am no longer that girl [or so I hope].
I started this blog because of our dear child, C. We realised something was not ‘very right’ about C when he was at the age of two. He did not really looked you in the eyes when you make goo-goo ga-ga sounds at him. He had not spoken his first word. While some said that boys generally are slower in development, we were worried. Of course, on the outside, we were pretending to be nonchalant about it. But at home, ‘Google’ and the library became our best friends.
Eventually, we made the decision to bring him for an assessment at the government children’s hospital. The educational psychologist (EP) felt then that C was still young, therefore termed him as ‘inconclusive’ but recommended that we put him under an early intervention programme which incorporated occupational therapy and speech therapy. After a year of waiting, in August 2014, we finally secured a place in the government-sponsored early childhood intervention programme. By then, C was showing more ‘signs’. While waiting for this government-sponsored programme, we placed C with a private speech therapist through a close friend’s recommendation. The bill was crazy! As a private ‘client’, we are charged $130 an hour. I am very blessed that both B and I are middle-income working adults. However, I can’t help but think to myself, how many parents out there with a child with learning or developmental needs are able to cope with this bill. From where we come from, C’s speech therapy’s bill is more than what a cleaner or waiter earns in a month.
We have to thank C’s teachers from the early intervention school, as he has blossomed tremendously under their teachings and love. He has grown from a child who is non-verbal, to one who speaks in phrases and short sentences. He has grown from someone who fears school and teachers, to one who loves to attend lessons with them. He has grown from someone who doesn’t look me in the eyes, to someone who loves to take ‘selfies’.
This March, we attended the pre-arranged half-yearly review with the EP at the government hospital. The bombshell came when the EP said, “There’s definitely some autism in your child”. My world seems to have collapsed or stopped moving for a moment. That’s the weird thing about parenting or life. While both B and I recognised there are some developmental issues with C, we still held on to the hope that he will be ‘alright’ after these interventions or that he will ‘outgrow’ it, for wasn’t it just yesterday that someone told us that boys are generally slower in their development.
I just got promoted in the beginning of the year, and just when I thought all is looking good with where our family is, I felt another ‘smack in the face’! As I thought about what the EP said, I became fuming mad! I wanted to tell her there isn’t some autism in my child. He is a child with autism. He is first a child, then a child with a developmental need. You’re a doctor, and you need to be more careful with your words. I guess it’s the notion commonly used in Asian. One would refer to a kid with dyslexia as a ‘dyslexic kid’, or one with autism as an ‘autistic kid’. While some might think it is just a term, to me, it is also a perception and culture.
So here I am, three months later, going on part-time, and deciding that today is the day, that I will be spending more time helping my child. As I say to my bosses, “To the world, I am one person, but to my son, I am his world”.
With that, I started this blog, to chronicle our journey together, as an Asian family, living in Asia, with a child with autism, doing what we can, to make his world a beautiful one. Not when tomorrow comes. But today.
Please read my blog entry on ‘Our Blog’ to find out more about the things we have on our blog. I wish this journey will be as fruitful for you as it is for us.