>Do You Still Think It Was Easy?


Other parents of children with Autism remark on how easy it was for us to recover Maya. They say that everything I did worked well for her. They compare their 6 month or 1 year journey and the little progress they have made with their son, to Maya’s progress. I feel that they belittle Maya’s extraordinary effort when they say that it was so easy for us. That we managed to resolve every issue so easily. 
Hmmm, did you notice that within that 2 years between diagnosis and recovery, I consulted 6, yes count ’em, SIX biomed doctors in Singapore, Indonesia, Australia, United Kingdom and USA at great expense? That I faithfully travelled to Singapore every single month to consult with our primary doctor? That I NEVER EVER missed a consult? That I email and communicate with him and my other doctors on a weekly basis? That I made sure I got a 2nd opinion consult every 3 months? I badgered and harassed my doctors to try new treatments and supplements even though they said it was useless. You don’t know that I spend 2 hours on a phone consult at night with my DAN doctor in the USA? That I stay up till 3am to answer emails from supplement companies so that I don’t delay my supplement orders and shipments any longer than necessary? 
I didn’t rely on just 1 doctor or just 1 lousy book to guide me in my journey. I attended 2 DAN Conferences in the US (that’s a 23 hour flight, 1 week of absence from the family and several thousand ringgit of sacrifice) and several other Autism conferences in other countries. I wished I could afford to attend the Autism One conference in Chicago or the MINDD Conference in Australia, but we couldn’t afford that.  I stalked and cornered respected doctors, biochemists and famous Autism parents and bombarded them with questions. I stood in line for ages silently wishing the parent in front of me would stop monopolizing the well-known Autism expert, just so that I could ask just 1 question? I looked like a tart sitting at the hotel bar chatting up compounding pharmacists and vendors just so I could wrangle an express delivery for DMSA and MB12 without a prescription. I stayed up till 2am talking to other parents I befriended there even though I was reeling from serious jet lag and had a gruelling day of medical conferences to attend the next morning. Do you still think it was easy?
You have no idea of the time, money and effort it took trying to cook gluten-free and casein-free meals that my girls would eat. In the first 8 months of doing the diet, I didn’t know a single person in Malaysia that was doing the diet. I badgered shopkeepers and distributors to bring more GFCF foodstuffs, there was just 1 brand of rice milk when I first started, even then the stock was extremely limited. I knew of no one in my country doing biomedical then. I was flying blind and solo here. Did you know that I was so desperate to get some comrade-in-arms for biomedical that I had to start my own biomedical support group? I was scared no one would join. I initially started the group so that I could learn from other parents in Malaysia, but every one had barely just started biomed at that time and instead looked to ME for advice. Me, who myself knew very very little at that time. I’m proud to say that now, I have many Malaysian biomed friends and that I learn from them.
I basically shut down my social life so that my entire time revolves towards recovering Maya. That I have lost many many friends because of my single-minded tunnel-vision in treating Autism, my inability to give my attention to their inane inconsequential conversations, my tendency to turn every conversation back to Autism, yeast overgrowth and immune dysfunction. We had to turn down invitations out with friends and family because it would have ended in disaster for everyone. That the raw pain and anguish was sometimes too much that I can’t bear being around other normal happy families. That it physically hurt when I see their healthy normal kids playing, yet my child is screaming in the corner. Do you still think it was easy?
I devoured every book, website and forum available on Autism treatments. I stayed up till the early hours of the morning researching and reviewing Maya’s treatment plan. I dedicated at least 3 hours every single day to just research and reading up on Autism. I spend ridiculous amounts on express courier and delivery just so that Maya could get that supplement immediately. I spent an insane amount of money we barely have, digging into our savings because we spent more than Paul’s income every month. I spent a staggering RM10,000 on ABA treatments every month and an average of RM2000 every month on consults, supplements and testing. And that’s not including the cost of organic and imported GFCF food and cleaning products, the cost of the conferences, books and materials. That for every 1 supplement that gave us Wows, there were 5 others that either didn’t do anything or worse, caused immense regression. And in between all that, for every 1 step forward Maya took, she also took 2 steps backwards. 
So just because in my blog, I write more about the success and triumphs, doesn’t mean there wasn’t any failures or deep hurt.  You are not privy to my reality, you do not live my life. You have no clue what my family and I go through every day. It’s just that I chose not to share it with you. I choose not to tell you of every time I cried, I would hide in the closet or lock myself in the bathroom while I sobbed my heart out alone. Just because you read my blog does not mean that you know me. So yes, if you choose to see it that way, yes it was pretty darn easy.
It is not a comparison on who spends the most on Autism treatments. It’s not a contest on who attended more conferences, of who has the consulted the most number of doctors. Going to a conference or having the best doctor does not guarantee you a recovery, it’s what you do with what you have that makes the difference. It’s the effort that you put into it, the attitude you have when you go throughout this journey. On how well you treat others who only seek to help you, on the basic civilities of saying a simple thank you when someone takes time out of their busy life to give you a piece of advice. 
Don’t compare your child with others, some kids improve tremendously on just the GFCF diet and a bit of cod liver oil. Some kids receive 40 hours of ABA for 3 years, full-on biomedical including chelation and IVIG, yet the progress is sadly very slow. I too get consumed by the green-eyed monster, the envy I feel when I hear a child improved immensely on just a few hours of ABA, or the child who recovered because his mother fed him peeled almonds. There will always be legendary stories, but there are also many many failures.There are no guarantees. But you still have to try. Some parents expect to receive a checklist called Things To Do When Your Child Is Diagnosed With Autism. I’m sorry my friend, it doesn’t work that way. 
Don’t make your child’s Autism as an excuse for your behavior. Everyone believes that they are entitled to special treatment. How many times have I heard the phrase “But my child is Autistic!” Yes, I know that. But so was my child, so are the many other families I know. These parents who
I am proud to call my friends do this for the very same reasons that I do this. Remember that I do this out of my own time and my own money, often without my husband’s approval. He believes that I do not get the thanks I deserve, I’m sorry to say that at low moments, I agree with him. But know this, I do not do this for you. I do this for your child. For every rude or hurtful comments I get, I choose to swallow the pain and the pride because I don’t want your child to suffer because of your ignorance or rudeness. Do you think it is easy to forgive the thoughtless comments and inadvertently rude remarks? I guess I’m a good actress, that I made it look and sound so easy. But it wasn’t……..
When Maya was diagnosed, I made a pact with God. That he would help me recover my child. In turn, I will try to help other children. It is very telling that Maya started to improve and progress faster when I too started to help other families. Though my efforts are woefully inadequate compared to some inspiring parents I know, my contributions are sincere. Whether I have helped to make a difference, I don’t know. But somehow, the more I helped other families, the better Maya got. Even though Paul was complaining that I took too much time helping others and apparently neglecting my own kids, Maya still kept on improving. So, for those who think that they don’t have the time to help, know this. God will help you when you help others too. Somehow, the universe works in mysterious ways. A very good friend of mine who herself does an immense amount of charity work for Autism, said the same thing too. The more she helped other families, even at the expense of having less time for her own child with Autism, somehow he too improved. Never forget the power of karma. Good things come to those who help others.
Luck had nothing to do with it, though I try and try unsuccessfully to be humble. But we shed blood, sweat and tears to get where we are now. Maya worked so hard to get where she is. She is an extraordinary girl, who went through extraordinary measures to get to Recovery. And she will still have many challenges coming in the future, together we will get through it together. 
Recovery is not guaranteed, even if you do all these and more. I have friends who are extraordinary mothers, they make the earth spin and the valleys rock with their resilience, persistence and tenacity. You know who you are, I am proud to be your friend. So, do you still think it was easy?

2 thoughts on “>Do You Still Think It Was Easy?

  1. >Marissa,I can readily understand the writing of this post. Just want to say, I am really proud of you. Not only for your contribution to recover your children, but also an effort you have made to help other families to overcome the difficulties. At the very least, I do appreciate you!Regards from Sabah.

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