It has been a long time since I have written, my apologies to my friends whose support and encouragement are deeply appreciated. There are many thoughts that are just waiting to be published, but time and circumstances have not been kind lately.
I do miss the creative process of writing, innocuous as it may be. I have a long way to go before I can write well enough for my work to be published. Somehow, putting my thoughts and experience into words have a therapeutic effect on me. A lot of my writings here are emotionally draining, most of them delves into memories and emotions that sometimes I prefer suppressed. It takes a lot out of me to expose the sadness and grief that my family has gone through. Even writing about the happy memories are heart wrenching as well. Yet I keep asking myself why do I do it? Even my husband asks me time and again, why do I write this blog?
When I first started on this journey with Autism, it was painful to read about therapies and treatments that were simply not available in Malaysia. It seemed that everything that I wanted to do involved moving my family halfway across the world, with money that I don’t have. I wanted to know how to do these treatments here in Kuala Lumpur, how do I get these services and products? There should be a way to do it from here and I remember wasting a lot of precious time. Precious time that I hope to save for another child who needs treatment now. Very quickly, I learnt not to dwell on the things that I couldn’t do. Otherwise, the anger and resentment would eat me up inside, leaving me a soulless shell. It is a very self-destructive force and I didn’t want to end up a victim. Instead, I redirected and channelled my time and energy into more productive means.
Just because I couldn’t have Dr Bryan Jepson or Dr Kenneth Bock treat my daughter, I wasn’t going to waste my time crying about it. If I couldn’t get Amazon to ship a book I really wanted to Malaysia, I would get my local bookstore to order it in for me. If a supplement company wouldn’t deliver to Malaysia, I would have it shipped to a Hub service and get it rerouted to Malaysia. Even if all my wishes don’t come true, at least I tried. At least, I can honestly look into my daughter’s eyes and tell her that Mummy did her best. I didn’t hold back and reserve my energy and resources for a rainy day, my rainy day is now! It was a risk I had to take.
I didn’t mourn the fact that I couldn’t get the best and most experienced ABA therapists in Malaysia, instead I worked towards getting reliable and enthusiastic therapists who were willing to learn and work hard. No point getting the `best’ therapists if they don’t bond with your child, no point getting the `best’ therapists if they couldn’t commit to you. Absolutely no point getting a consult with a world-class doctor if it meant travelling 23 hours on an expensive flight and it’s going to drain away all your savings just on one consult. Leaving you with no money to pay for subsequent consults, supplements or tests. No point holding out for that precious consult with that famous doctor if it meant you would have to wait 9 months for an appointment, don’t wait! Do it now, see a doctor now. Who knows, that doctor who you or others label as being second-best may well be the best doctor for your child.
The best doctors and therapists are the ones who care about your child, the ones who are committed to helping you. If they do not have 10 years experience in biomed or ABA, so what? As long as they are willing to learn more along the way, work hard for your child and take the time to listen to you. These are all the people who will be with you along the journey, so make sure these are people you can trust. The so-called “best” may not be the best for you child.
If not for the advice, help and support of some amazing parents, friends, family, therapists, consultants and doctors, my daughter would never have come this far. Did you know that I have heard criticisms about every one of these people? No matter which doctor, therapist or consultant I had, there were always someone who had criticism about them? Everything was “unproven”, second-rate, not the best, it’s quackery, it wasn’t double-blind placebo studied etc. If I let my decisions be ruled by other people’s opinions, I wouldn’t have done anything at all. If I waited until mainstream medicine had conducted “proven” double-blind placebo studies on every treatment, Maya would have become a severely Autistic adult by then. Every single person, professional, product, therapy or treatment that I was doing have come under harsh criticisms. But, I learnt to put faith in my judgement. And I learnt that there are some people who are so negative, that being around them would drag me down into their world of negativity. I acknowledged that some people have been deeply hurt and disappointed with the world, and only seek to give me advise. But I realised that I would have to take some risks. I will never find approval from everyone, that there is no such thing as a 100% guarantee label on any Autism treatment or therapy. No such thing as the perfect therapy or treatment. These were times when I had to take a leap of faith.
I remember the unsung heroes too, the quiet ones who never get the acknowledgement, but without them, we wouldn’t be living this privileged life now. I give thanks to the Fedex guy who fights so hard on our behalf with Customs to get our supplements into this country. I am thankful for the kindness and patience of nurses and doctors’ receptionists who put up with my demands. My appreciation for the cook at Maya’s ABA school who kindly prepares GFCF meals for her. I love the grocers and shopkeepers who stock up on my favourite rice milk, GFCF cookies and spaghetti. Not only that, they take the time to reserve them in our name and call me to give me first dibs. How lovely is that?
I thank amazing friends who nearly broke their backs to carry 20kg bags of Epsom Salts and distribute it to others. Selfless friends who smuggle supplements into the country for me at their own personal risk. I thank the restaurant waiters who have served us for years with patience and graciousness, even though every time we bring our children, they create such noise and mayhem. We leave trails of destruction at every restaurant we go with spilt drinks, scattered crumbs, snotty tears and screams. Yet they still made us feel welcomed even though we usually leave in such a rush that we never remember to tip them. I am grateful to the florists who tolerate it every time my kids go past their shops, the girls would excitedly touch their beautiful floral creations. Overtime, the girls have learnt not to touch them, but occasionally they would forget. Even when their excited screams would drive away the other customers. Occasionally, I would buy a bouquet out of guilt but not enough to make up for the mayhem. Yet these guys have always been kind to my girls. I give out silent apologies to countless others who over the years I have been less than kind or brusque, usually arising from the stress and pressures of dealing with the girls. It doesn’t excuse any rudeness on my part, yet I have never intentionally set out to be unkind. I hope God will hear my apologies on their behalf.
I love each and every therapists who have taught Maya, their kindness, loyalty and commitment has more than made up for their so-called lack of qualifications and experience. In this, I have been blessed to have found the best support network for Maya. They may not live up to the expectations of what the best may be to some, but in this instance, they were the best for my girl.
I thank each and everyone who has written a comment on this blog, those who have read my writings and urge me to keep going. I would love to reply back to you, however if you didn’t w
rite your email address in the comment, sometimes I am not able to reply to you. Sorry if I didn’t write back, not that I didn’t care enough. Just that I didn’t know who you are, my friend…..
This blog is my small part in paying it forward. I remember how scared and lonely it was when we first dealt with Maya’s diagnosis. I was frustrated by the lack of Autism information that was specific to Malaysia. Most of the information regarding Autism treatments are USA-based. I remember writing to American-based biomed forums for advice, most of the time the replies though in theory were extremely helpful and well-meaning, they usually left me feeling even more dejected. All these parents would reply about supplements and treatments that just were not available here. I wished there was someone else who knew about where to get them, is it available etc.
Not that I ever expected to be spoon-fed, yet I felt that I kept wasting precious time working and digging towards something that turned out to be a dead-end. To me, this is what Autism is like, you feel like you’re trapped in an avalanche. Every day you are trapped underground, you’re a little further away from being rescued. There’s less energy, your food and water are running out. You’re surrounded by dirt, filth and excrement. The air feels stale and thin, you can’t seem to breathe deeply. After sometime, you face the fact that the rescue team can’t hear your cries. This is the point where you decide whether you give up and cry and stay trapped underground. Or do you dig a tunnel with your bare hands and find a way out. Without a spade, torchlight or water. Praying that you are digging in the right direction towards the surface.
If there was only some way that I could help even just one family find their way out a little bit faster, a little bit easier. I want to play my part in helping an innocent child out into the fresh air a little bit faster. I may not be able to excavate you out, but I hope you can hear my voice as I call out to you and you can dig towards my voice, towards the surface.
It has been 2 years since Maya was diagnosed, since then resources and support in Malaysia has increased a lot. I am proud to have played a part in this, small as it may be. Paying it forward…..in the hopes that you too, will pay it forward when a friend comes to you in need. I was lucky to have heard some powerful voices, who called out to me and cheered me on. Without their voice, my family would still be buried. Because of you, I’m joining the chorus of shouting. Autism is Treatable!