I attend an Autism support group that meets regularly once a month. Our talks usually revolve around types of behavioral therapies, advice from experienced parents and most recently there’s a marked interest in biomedical intervention for Autism. It’s been exactly 1 year since Maya’s diagnosis and since then we have implemented the DAN! protocol for biomedical intervention to some success. Maya is now 3 1/2, attending an ABA `school’ and is a happier girl compared to a year ago.
There’s a lack of awareness as well as resources for Autism in Malaysia in general. And biomedical intervention is virtually nil. Paul and I feel that we have exhausted nearly all that Malaysia has to offer in terms of biomedical treatment for Maya. We now visit a DAN! doctor in Singapore (this is our 2nd one), I’ve read numerous books (mostly purchased online from Amazon.com), research the topic on the internet daily (I commit 3 hours a day), talked to as many people as possible (I’m now one of those aggressive parents I used to dislike who go up to a perfect stranger especially at hospitals and doctors’ waiting rooms and ask intimate details of their child’s diagnosis and what treatment/therapy they’re doing) And flew halfway across the world alone to attend a DAN! conference. I’ve persuaded Paul to take some time off his busy schedule to meet with a doctor in Australia when he’s there next week for some meetings and I’m constantly in touch with other parents all over the world for advice and support.
In the 1 year that we’ve journeyed into Maya’s recovery, nothing beats the irony and bizzareness that was last Sunday morning. I volunteered to be this month’s `guest speaker’ and give a presentation on biomedical intervention. Arriving at our usual meeting place, we were greeted with pitch darkness from the electrical power outage and blinding heat (being the typical Malaysian weather). So off we go and moved to the poolside area to find a place with a cool(ish) breeze and hopefully with a working power socket. I’ve spent weeks coming up with a 48!! slide presentation and arranged to have a projector on the day. In true Malaysian fashion, things never go according to plan.
Long story short, we were kindly `escorted’ off the premises and we ended up having our support group in a nearby McDonalds! Imagine the irony, here we were a bunch of dedicated gung-ho parents with a deep concern for our children’s health and nutrition, in a McDonalds. So while slurping our supersized Cokes and munching on Egg & Beef Bacon McMuffins (they ran out of Orange Juice and no, we don’t get Deli salads in McDonalds here in KL) we sat down and talked about the importance of a healthy diet and vitamin supplements. Nobody blinked an eye when I started talking about poops, nobody complained about being pushed around all day, nobody was annoyed when the shockingly obese little boy started climbing the jungle gym noisily next to where we were sitting.
Everyone banded together in true support group fashion (these are the best bunch of parents ever!), patiently listened when I talked about GF/CF diets for the dozenth time and shared my experience on what has worked for Maya and what has not. Everyone shared their concerns and opinions. There were offers to help get supplements for others because most of these items are not available in Malaysia. Paul and I came back feeling motivated and strengthened. That’s what a real support group is.
Our beloved support group leader commented that nobody seems to be angry or annoyed when we had to move here and there and that everyone seemed to be happy and cheerful in the face of extreme KL heat and that we were losing valuable time. And I said that this is a very small set back compared to what we have been through as Autism parents.
We all have our personal stories of grief, defeat, negativity, set backs and lots of blank walls in our journey to recover our children. We’ve encountered many bleak prognosis, anger at quacks who are out to scam our money with hopes of treating our child, sadness at family and friends who put down our efforts, growing worries about dwindling savings and finding more money to fund the next treatment, despair when our children seems to retreat deeper and deeper into their world, feelings of hopelessness when our children for the hundredth time fails to look us in the eye or to reciprocate our attempts to reach out to them, the lack of support and encouragement from loved ones. So, a power blackout and a noisy McDonalds on a Sunday morning is but a mere hurdle for me and my friends.
Thank you to all of you who’ve supported and encouraged us throughout this difficult year. The kindness of family friends who’ve taken the time and effort to find out more about this puzzle we call Autism humbles me. Thank you to Maya for showing us the joy in our lives, but for her condition we would never appreciate what we have nor would we see the rainbows in the sky after a storm.