“A woman is like a teabag. You never know how strong she is until she gets in hot water.” – Eleanor Roosevelt
Autism demands a life of calculated hypervigilence. Always alert, always equipped, always prepared. We sleep with one eye open, one ear cocked, ready to jump up at the slightest noise. We build up an arsenal of ‘weapons.’ We are armed with syringes, jars of supplements, stacks of lab results, towering piles of medical journals and the many accoutrements that makes up an autism parent’s armoury.
I accessorise myself with a supermom cape, truth goggles, big girl panties and b***! boots. At times, my thinking cap is replaced by a tin-foil hat. Though if I had my way, I’d have chosen the Cloak of Invincibility, a magic wand made of unicorn horns and a Nimbus 2000. Alas, we don’t live in a magical world, drink butterbeer or travel by the Floo Network (See Harry Potter, Books 1 – 7. Yes, my geek-flag flies high.) Neither do we live in the neuro-typical world. Our plane of reality is different from the average family.
Autism has stripped away many of the niceties of our life. I rarely think about the loss of the privileges and comforts I was accustomed to. But my husband and I sorely miss the spontaneity we once had. Now, every move is calculated, every step is measured, every thought is scrutinised. Everything had to be planned to military precision.
Winging it used to be fun. Spur of the moment decisions made life more interesting. But Mei and Min Min needed a highly-structured environment, transitions were oftentimes a nightmare. For years, we lived within the dictates of autism. Every impulsive bone in my body was suppressed. Lists, schedules and timetables ruled our life.
Life pre-autism is a hazy memory, I vaguely remember parties that lasted until the wee hours of the mornings, exotic holidays, long lingering lunches, movie marathons with the volume cranked up high. I recall a past life filled with nice cars, couture shoes, lazy weekends and sleeping in. And what ever happened to Sunday morning nookie? When was the last time THAT happened?
When spontaneity flew out the window, so did romance and passion. My sense of humor quickly followed suit. I used to have fun. Heck, I used to BE fun. I know my husband misses the original me, though he would never dare to say it out loud. But in exchange for what I’ve lost, I’ve gained reserves of strength and resilience I never thought I had. But will I regain the spontaneity, the fun factor and my sense of humour? We are working on bringing back the romance and passion in our life, but will it be the same? For now, my original self is a stranger to me. Is it possible to reacquaint the original me with the ‘now’ me? I believe I will, even if I have to schedule it.
Destiny has other plans for this family. Like it or not, autism has set us on an altogether different trajectory than I originally planned. Teabag in a tin-foil hat, that’s me.
About the photo – Mei recently discovered my old collection of Baby Blues comic books. She absolutely loves “Ten Years and Still In Diapers” and totally gets all the jokes. She especially finds the title hilarious. Ironic really, seeing as how if we hadn’t found biomed, SHE would still be in diapers.
About the Author:
Marissa Bagshaw is a mother of 2 children who are recovered from autism. Her blog Spectrum Mum in Malaysia is inspired by her daughters’ journey through autism. Marissa is the founder of KL Biomed, a support network for autism families doing biomedical intervention in Malaysia and neighbouring Asian countries. She is also a co-founder of The Thinking Moms’ Revolution. Marissa lives with her husband and daughters in Kuala Lumpur, Malaysia.