7 years ago, Mei was an angry, rash-covered baby who cried inconsolably after the Hep B shot. Since that day, she never slept for more than an hour at a time. She had explosive diarrhea, difficulty breast feeding, reflux, manic mood-swings, mega-tantrums and sensory processing issues, all this before she was 1 month old. Little did we know then that autism was lurking round the corner.
As a toddler, constipation, rashes, runny noses and sore throats were followed by rounds of antibiotics, medications, laxatives and steroid creams. Yet, we continued with the standard vaccination schedule.
Mei is legendary in our family as the ‘difficult and fussy baby’. She had an intense fear of strangers. When people came to visit, we had to tell our guests to stay seated and not make any sudden movements. If a guest stood up, it would terrify Mei into a screaming fit. Needless to say, we rarely had visitors. And we stopped going out in public. It got to a point where neither Hubby nor I dared to be left alone with Mei, for fear that just one person would not be able to control her.
Then came the tip-toe walking, the eye stims, the echolalia, repetitive movements, rigidity, difficulty transitioning, mood swings, inappropriate laughter, berserker tantrums, manic episodes of rage, hyperactivity, night awakenings followed by giggling or night terrors. The loss of speech and eye contact. The frequent licking and mouthing, smearing saliva, the biting, the self-limiting diet of the 3 major food groups in autism - bread, milk and sugar. She varied between explosive diarrhea and constipation. The sensory processing disorder was at an all time high. She climbed everything. Climb and jump, climb and jump. Pulling out clumps of her own hair whilst laughing maniacally. And the spinning, the relentless spinning. It was terrifying to watch the intensity of her movements.
Then came the head banging.
The autism diagnosis came soon after. Endless tests, assessments, consultations, search for therapies, endless research into biomedical treatments, terrifying blood draws and more invaded our world. Then the realization that most of the treatments I read of were not available in this country. Navigating the world of autism with no maps, no compass, no guide, no GPS. Lost, alone, scared and no light in sight. My world, my life, spun out of control.
There were no biomedical doctors in Malaysia back then, you had to travel overseas to find one. The thought of crossing borders to obtain medical treatment was just too much for me to grasp at that time. Ironic considering that both Hubby and I travel so much. There were no biomedical resources in Malaysia back then, I felt so isolated in those early months because many of the autism parents I knew here have not heard of biomedical treatments. The small handful who have done some biomed did not find it beneficial. I felt that I was the only one in the country doing it at that time, though now I know that there was a smattering of parents who continued doing dietary interventions and biomedical treatments. However, they kept mostly to themselves and never talked about it with other parents for fear of censure and critique.
Living with autism in a 3rd world nation is …well, you’d have to live it to understand it. I had to let go of the anger and resentment at the unfairness of it all. How could I strive for recovery when I can’t even get melatonin and magnesium supplement in this country? Casein-free probiotics? MB12? Grapefruit seed extract? Vitamin B6? Sorry, not available here. Despite all the challenges, my faith in my eldest daughter’s recovery stayed true. Because if I myself didn’t believe, who else would? I saw opportunities for recovery at every turn. I turn every challenge into an opportunity, an opportunity to recover my children.
Now those days are a hazy memory, evocative of a harsher, miserable world for us. Now, Mei is sweet, calm and gentle. I finally have time to nurture my relationships. I have time to enjoy watching my children grow up, instead of scrutinizing, correcting and redirecting every move, every stim, every outburst.
I am happy. I am contented.