>Survivor, Not Victim


A parent had recently asked me if I was scared, she had written to me with such stark honesty about her fears and desperation. She wrote of her life, her child and how twisted her world had become. I can still remember living in a twisted world and I’m sure I have scared off a lot of friends and alienated many people around me with the intensity of my pain. Though I got a lot of sage advice, I was deaf to it because of the roaring of the pain in my soul.

To most people, listening to an Autism Mum can be quite challenging. It is hard for most people to truly understand what life is like with a child with Autism, most think that it’s like the movie Rainman or what is commonly yet wrongly portrayed in TV as what Autism is. For a lot of us Autism Mums, we learn the hard way not to talk about it with most people, otherwise you end up alienating yourself and lose friends. How often can a friend or even family members listen to you about the stimming, the spinning, the lack of speech, the poop smearing, the obsession to lick every single thing or the bad nights that the mum has had? The ASD symptoms can be quite bewildering to non-ASD parents, most of them don’t understand why we obsess over the seemingly small things. So what’s the big deal about lining up toys, waking up singing in the middle of the night, climbing on the television, biting the teacher, spinning in circles, lack of cooperation or speech that is slow to come? What’s the big deal about a child’s constant drooling, lack of eye contact, repeatedly tapping on the walls or standing upside down? No one wants to hear about the insane screaming and tantrums that used to go on in my home (except maybe you guys who are reading this!) When I talk about the meltdowns and anxiety, the picky eating and the non-compliance, usually I get blank looks or condescending remarks on better parenting.  

My friend had poured out her soul into her email and wondered why I hadn’t replied to her. I finally wrote back and apologised, explaining that both my girls were ill and so was I, thus the late reply. I also wrote “You asked me before if you scared me; I have been in situations a lot scarier. I don’t scare easily.”

As a parent with a child with Autism, you would understand what those scary moments are. I have been scared when my daughter would bang her head so hard against the floor that I thought her skull would break. I remember the fear when I heard Maya laughing insanely in the dark at 3 o’clock in the morning. I have let fear stop me from getting treatment for my child. I have been afraid of being left alone with her because I was not able to control her. I was scared of taking her out in public because she would scream so loudly as if she was being tortured that everyone would stare. After what my family and I have been through, an emotional email from a distraught mum doesn’t scare me. I have seen fear in my childrens’ eyes; that’s when I knew that just because Mummy is scared, it doesn’t mean that Mummy doesn’t have the courage to keep fighting for her baby.

I am guilty of holding my child back, for fear of her failing. But if I never allow Maya to be challenged, how will she ever learn and grow? The future was full of unknown fears, because Autism has such a bleak prognosis, I didn’t know how I should plan our future. Leaving her in a room with a therapist was difficult, so was letting her go to school for the first time. 

Doing the first blood draw was so traumatizing for Maya and us that it actually stopped us from pursuing biomedical treatments further. I was scared that doing biomed would require us to do more blood tests, the memory of that first blood draw still brings shivers through Paul and I. It took 6 people to hold Maya down, drop after drop of blood was squeezed out of her arm. Vials and vials of precious blood, to the sound of Maya’s horrific screaming. I swore to never let her go through that again.

Ironically, that horrific blood draw was not even for Biomed, it was actually for mainstream medical screening tests. The worst thing was, all those tests came back negative or inconclusive. The doctor didn’t find anything “wrong”, there were no treatments to follow up with except some vague remarks about giving cod liver oil. All that trauma for nothing, it imbedded a deep mistrust in the medical profession in me for a long time. 

I kept making excuses and delaying to see a DAN doctor for several months. We’ll see the DAN doctor when…… her ABA program is well under way, when she gets over this cold, when she’s healthy, when she is more compliant, when she can listen to us and not meltdown when we travel with her etc. Then when both girls were hospitalized for Rotavirus, it suddenly hit me that if I were to wait to travel to see a Biomed doctor only when Maya was healthier or when she was more manageable, it will never happen. She was having colds, flu, fever, coughs and tummy aches constantly. She was still non-compliant, there were still epic tantrums and meltdowns whenever she wasn’t doing ABA. There were very few moments when it was convenient for us to take time off to travel to the doctor. There were always important ABA programs that we couldn’t take time off from, there will always be chores and meetings. There was never a perfect time to travel, there were always other commitments that took precedent. It was a lightbulb moment for me, I really understood then that my child was sick. She will not get healthier nor will her behaviour improve until I get her treated. I finally understood that taking care of her underlying medical health should be our foremost priority. 

I finally got up my courage to take that step and make an appointment with a real DAN doctor, someone who was listed in the ARI website. 6 months of wasted time, only doing ABA and not doing anything about her medical health. I finally realised that I was scared of the blood draw, that this fear was holding my daughter back from getting the medical treatment she needs. That fear held us back for so long, that when we finally met our first and then our 2nd Biomed doctor, I felt so foolish. Because the fear that I was so afraid of was unwarranted. There were no blood draws involved! Only a prick on the finger for a blood spot. 
Months later, we were required to do blood draws for certain tests as we were doing more and more complex treatments. However, we took it all in stride. Sure, it was difficult and painful to go through. But we realise that Maya got over it much quicker than we did, it was foolish of us to hang on to that fear when the pain has already worn off long ago. We just did another round of blood tests a few days ago. Maya cried, Paul went a little pale and I got choked up when I saw Maya’s blood spurting out of her vein. But we got over it. We know that in order to ensure that we do all these treatments as safely as possible, we do need to go through a blood test once in a while. A small amount of pain now, for a lifetime of happiness right?

This morning, I was sitting in the lobby of a dance school, waiting while Maya is having her ballet lesson. She has been pleading with us for months to go to ballet class, but I always held back because I felt that she was not ready for it. After some time, we finally took Maya in for a class. As always,
whenever we felt that we were pushing her over her limit or demanding too much from her, she always exceeded our expectations. Again and again, she has shown us how high she can soar. I am in awe of this beautiful daughter of mine, her heart is so big, her strength and courage puts me to shame. And yet, I still tend to hold her back for fear of failure. Whether it’s hers or mine, I’m not sure.
She did so amazingly well, in a class of a dozen little girls in identical pink tutus, you would not see her any differently from the other ballerinas. Except for her huge smile and graceful arabesques. She has had several classes and her enthusiasm and love for dancing is apparent. She pays attention and obeys everything the dance teacher says, points her toes and follows all the moves. She is dancing in a group with other tiny adorable ballerinas, stretching on the barre bars and standing at first position like a prima ballerina. I was surrounded by other mums who, though proud of their little girls, seem to take it for granted that their girls are fine. I’m so freaking proud of Maya that I had to stop grinning like a fool in the lobby, my heart is so full of pride for her I feel it would burst. They are chatting about family vacations and private schools, while I still can’t let go of the grip of Autism just yet. 

In the first few months after Maya’s diagnosis, the fears and the tendency to hold Maya back was turning me into an Autism Victim. When I discovered that about myself, I swore not to be a victim, that my daughter and my family will not be a victim to Autism. Instead, together we took the journey to be Autism Survivors. Sometimes we need to go through a war in order to survive. Though the war on Autism is over in our home, we still feel like we’re living in a war-torn zone. It will take time to rebuild this family, though we are well on our way. It will take even longer to recover financially, though our initial investment has multiplied ten-fold in other ways. We have kicked the enemy’s ass and regained our country. We are no longer Autism Victims, we are now Autism Survivors. 

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