Category Archives: recovery

>Dumb Advice and More…..

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This is a collection of the dumb advice we’ve been given, ‘famous quotes’ that left me reeling from the sheer thoughtlessness and ignorance , my observations on Autism and how I view life differently now…..
On Trying to Get a Diagnosis for Autism
Upon grudgingly admitting that Maya has many Autistic features, one famous child psychiatrist advised us to feed our daughter more ikan bilis (local dried anchovies)
The doctor who confirmed Maya’s diagnosis of moderate Autism charged us RM10,000 for a bunch of useless mainstream medical tests and took 6 vials of blood. At the next consult, she charged us a further RM500 to tell us that all the test results were normal and to give her cod liver oil. 
It must have been bewildering to the psychologist when she told us Maya has Autism, my response seemed almost happy. In a way, it was a relief.  For some parents, it may have come as a complete shock. But I had known for 4 months already based on my own research, but everyone dismissed me as a neurotic mother. It was a relief to know that Maya wasn’t behaving the way she was because of my bad parenting or because she was a naughty child. There was a good reason why she behaved the way she did and why I struggled so horrifically as a parent. You know what I mean.
Someone said “But she’s only MILD Autism right? That’s why she’s ok now” By the way, not that it was any of your business, but if I ever showed you her psychological evaluations and reports, Maya was diagnosed with Moderate Autism. However, in these reports, the diagnosis falls into 3 categories- Non-Autistic Range, Mild to Moderate Autism and Severe Autism. So yes, Maya fell within the Mild to Moderate range. But if she scored just 2 points higher, she would have been in the Severe Autism range. She was definitely not Mild. How I wish…..
When my hubby told someone that Maya had Autism, the response was “Congratulations! She’ll be a math genius!”
When we mentioned that our child was Autistic, the response was “Oh, how lovely….” She thought we said Artistic, we didn’t bother to correct her.
Soon after receiving Maya’s distressing Organic Acid Test results, I shared the report with someone. I tried to show that Maya has many medical conditions that needs to be addressed. The response was “She’s still young”
When trying to find out what was wrong with Maya and daring to broach the subject of Autism, the pediatrician triumphantly said “See? She’s not Autistic, she looked me in the eye just now!” Yes, Maya did look at him in the eye for about 2 seconds. But the other 43 minutes we were in the doctor’s office, Maya was shrieking, scripting, grunting and petrified.
Someone admitted to us that they thought Maya was Autistic and misbehaving because Paul and I were bad parents.
Trying to Live A Normal Life
Having to turn down a birthday party invite at a noisy kids’ play gym full of whooshing hydraulic sounds and loud guns firing little balls like a cannon, I tried to explain Maya’s Autism and auditory processing disorder. The parent said “Well, she can stay on the other side of the gym where it’s not as noisy”. She didn’t understand the sheer torture of auditory and sensorial assaults  being in that environment is for Maya.  Certain noises at certain decibels are unbearable to Maya, standing on the other side of the room doesn’t help. I accept that most people don’t understand about this condition, but I shouldn’t have to apologise for my child’s Autism.
When commiserating with a friend who just learned that her child MAY be susceptible to a medical disorder later on in life, she said “Oh it’s ok for you, it’s just Autism. You get to do some special education and she’ll be all right soon enough. But this is serious”. Hmmm, is this a competition on whose child has the more serious diagnosis? 3 years later, her child is still normal and has no health issues at all. 
When Maya was younger, Paul slipped out that I was scared to be left alone with her. The self-righteous condescending response I got was “Hmmm, I took care of my 2 kids all by myself with no help at all” Well congratulations lady for being Mother of the Year. I was so angered by what I perceived as Paul’s betrayal, that he had exposed my deepest darkest fears. How could a mother ever admit to anyone that she was scared of her own child? Of being left alone with her own baby? 
We have been shushed at and shouted at  by strangers because they thought our kids were naughty, misbehaved or that we were just bad parents. Not to mention the countless stares and tsk tsk tsks….
You ever notice how freely parents talk about their child’s diagnosis, deficits and disabilities in front of their kids? They have Autism, they are not deaf. If someone discussed your faults right in front of you, imagine how embarrassing that is?
An entire planeload of passengers and flight attendants were struck dumb by Maya’s non-stop screaming for 2.5 hours and how ineffective we were at disciplining our child. People from the plane remembered us days after and came up to talk to us to give us parenting advice.
It pisses us off when we go out without our children trying to pretend we’re still a normal couple, yet other people wants to discuss Autism and showing their concern. It also pisses us off when other people don’t broach the subject of Autism at all and continue on like normal, as if they don’t care. To my friends, I’m sorry……
On Recovery
When asked why we still do biomed even though I “claim” Maya is recovered, I explained that it’s for health reasons. And that if she eats too much gluten and casein or if she misses her supplements for more than a week, then we notice some regression. Not that she regresses back into Autism, but we would notice some quirkiness or inappropriate behaviors. The sceptical response was “Oh, so I guess that’s what you mean by  recovered”. Hmmm, how many recovered kids do YOU know?
Have you heard of the term “managed recovery”? That means your child has lost the Autism diagnosis, however still needs additional support in terms of diet, supplements and perhaps educational therapy. 
There are many kids with asthma, diabetes, allergies and other medical conditions that are considered normal. They have special diets, take medications or supplements. But yet you won’t accept tha
t my child is ‘normal’ because she’s still on the GFCF diet and still needs cod liver oil and Vitamin C?
Did you know that recently Maya not only tested within the Non-Autistic Range, she scored higher than the average score of a typical child? She’s better functioning and more intelligent than her classmates. Yet a mainstream kindergarten teacher took malicious delight in reporting to me all of Maya’s deficits in class. When right across the room, another classmate sits crying every single day while yet another child is totally non-verbal. 
Yes, one of Maya’s previous classmates in a Montessori kindergarten is non-verbal, but the school was ok with it. And yet they say Maya needs additional support and is not “normal”? Not only that, they asked for Maya’s shadow whom I pay out of my own pocket, to also aide other kids who need extra help? Either the school needs to increase the number of teachers because their staff can’t cope, or you ask their parents to pay for a shadow aide for their own child.
When hearing about how much Maya has progressed, someone said “Oh, she wasn’t really Autistic to begin with”. I mean, do you seriously think that I would make this up? That I willingly put a label on my daughter? Even before she officially received the Autism diagnosis, friends and family knew Maya as the “difficult child” being the most polite thing they dared say to my face. 
When Maya started to show significant progress after years of hard work, someone said “See, who said she was stupid?” Errr…..no one did, but apparently you did
Stretching The Dollar for Autism Treatments
Others think that we’re rich, thus we’re able to afford ABA and biomedical. But I still live in the same small apartment for the past 6 years. Other people are buying new houses  which are 3 times the size of my apartment.
My husband is Australian, we have family who would love to see us in Australia, we can’t even afford to have a holiday back to my husband and daughters’ birthplace.  But you have a holiday with the entire family there and yet you claim to not have enough money for biomedical treatments for your child’s health? 
You rock up in a chauffeur-driven luxury car and say that you can’t do biomed because it’s expensive? I downgraded my nice car to a smaller cheaper car with less airbags. We still only have the 1 car. Yet, both husband AND wife drive European luxury cars, some have 3 cars.
Treating Maya’s Autism was a necessity for us, not a luxury that we chose to afford or not. But we did chose to sacrifice many luxuries in order to afford her treatment, we chose to prioritise that over all else.
We did not get any financial assistance at all, not from the government benefits, insurance or entitlements. In other countries, behavioural therapy is provided to families for FREE for 2 years, they get subsidies and assistance. Yet they still moan about the long waiting lists and other expenses. Do you not realise what a privilege that is?
On Bowel Movements
Maya did a legendary poo that left both Paul and I leaving a posh 5 star hotel clad in a freebie sarong and towels. We changed her nappy in the bathroom, between her screaming and thrashing about, we were so filthy we had to put our clothes in a plastic bag. Luckily we managed to get a free sarong and towel from the spa.
I don’t think it’s freaky that I have an awesome collection of photos of the girls’ poos. That it’s now second nature for me to whip out my iPhone or iPad and show the doctor a photo of it. 
I’m fascinated by other parents’ stories of their children’s bowel movements. 
On Blood Draws
Maya’s first blood draw for mainstream medical testing took 6 adults to hold her down. Maya screamed and screamed, I lay down on the bed desperately to hold on to Maya while she trashed and struggled. Paul could barely even look. The doctor squeezed drop after drop of blood, it took 1 hour. The entire day care ward of the hospital was shellshocked by the violence of it all.
Maya’s second blood draw, which was for biomed was in the doctor’s office, just  Maya, the doctor, Paul and me. By the 2nd vial, Paul got nauseous. The doctor took 4 vials of blood, by the end Paul was about to faint, turned white and squatted on the floor. 
Maya’s 3rd and 4th blood draw, it took barely 3 minutes. Maya recovered after 5 minutes, especially when Daddy gave her an illicit chocolate treat.
Maya’s 6th blood draw, it was just Maya, me and the lab technician. That was an awesome day.
On Autism Movies
Autism movies pisses me off. They always get me angry, incredibly sad and they are usually non-productive to me. The lack of real info on the treatments enrages me, they only show happy smiling high-functioning kids during ABA sessions. But never show the ones where behavioural therapy did diddly-squat. The Autism parents filmed all look so freaking happy, nothing like how I usually look like most days- exhausted, hopeless and full of despair.
After watching Temple Grandin describing the 3 types of Autistic geniuses and savants in the movie A Mother’s Courage, I asked my husband which category does Maya fall into? He said the loveliest thing “She’s none of them. I don’t want her to be a genius at something. That means that she is still Autistic and we have failed”
Autism movies gets me all worked up and super critical of these documentaries more than any high-budget Hollywood blockbuster. 
In Autism movies, do you ever notice how much junk food the kids eat, the nasty packaged foods the mums buy, how they load grocery carts with boxed, canned or frozen foods? How you don’t see a single fresh green vegetable bought or served? I know many children with Autism have severe feeding issues, both my kids are like that, so yes I do know how hard it is. But if you keep buying them junk food, they will keep eating them. The kids will tantrum over any little thing anyway, so why not let them tantrum over not getting their daily fix of Dori
tos and Coca Cola?
In an Autism movie, a mum with a grown adult son with Autism offers coffee to him. He didn’t ask for it, he didn’t tantrum to get the coffee, she ASKED him if he wanted coffee. When he didn’t respond, she asked him again and again!! Hello, ever heard of the effect of caffeine on the neurological function?
About GFCF Diet and Biomedical Intervention
Ever notice how most parents freely and unquestionably give antibiotics and panadol even when unnecessarily prescribed by their doctors? Yet when asked to take antifungals which the kids desperately need or remove gluten and casein from their diet, they ask 100 questions? 
Apparently it’s ok to feed our kids junk food, soft drinks and candy. But we are censured for feeding them healthy, nutritious, organic meals which are gluten and casein free. 
The GFCF diet is apparently unproven. But neither have they been disproven.
The GFCF diet is not an Autism treatment, it is a dietary intervention for people who have tested positive for multiple food intolerances. It may not work for every child, but it works for mine. So it really doesn’t matter to me when tv networks and newspapers report that they are useless. I know of many studies and reports on how ABA is the ONLY scientifically proven treatment for Autism, but I also know of many children where ABA didn’t work at all. 
As many studies there are that prove vaccinations does NOT cause Autism, there are just as many studies proving that they DO. If you would only look……
If vaccinations are safe, why is there a special Vaccine Court? 
Though many have failed in their lawsuits against pharmaceutical companies and governments for vaccine-induced injury, there are also many cases where the families are awarded damages.
Why bother to treat Autism with biomedical intervention and diet? After all, Autism is caused by genetics, and genetic diseases are incurable right? Hmmm, only 10% of Autism cases are purely genetics. What about the other 90%? 
Even if you are convinced that your child’s Autism is caused by genetics, doesn’t mean that everything is genetics. Are bacterial, fungal and viral infections genetics? Are vitamin deficiencies genetics? Are chronic constipation and diarrhoea genetic? Are neurotoxicity genetic? 
Genetics is a convenient label to fall back on when refusing to treat your child’s underlying medical issues. It’s just an excuse when you refuse to see that your child needs more than just neuro-psychotic drugs.
Biomedical doctors gets censured or sued all the time. So do mainstream doctors. That’s why they have massive insurance coverage for medical malpractice. Look it up. 
Dr Anju Usman and Dr Dan Rossignol, the equivalent to Grammy nominees of the biomed rockstar doctors, are being sued right this minute. Dr Steve Edelson was sued by parents as well. Fast forward several years, he is now the Director of the Autism Research Institute. 
I have met many doctors who do everything by the book and never gotten sued or under fire by the medical authorities. Yet, these are the doctors who have contributed the least to my child.
Just because my child had Autism, does not mean I know all there is to know about Autism. Do your own research.
As you can see, Autism affects families in many ways. Much of the devastation left by Autism is unseen, unheard and unpleasant. A lot of resentment, anger and fear resides in the soul of Autism parents everywhere. But I wouldn’t have changed it for the world, those words only made us stronger…….

>Do You Still Think It Was Easy?

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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?

>Piano recitals and Bicycle Rides

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A couple of months ago, Maya started to play the piano. Paul had taught her to play Twinkle Twinkle Little Star and she caught on very quickly. Based on those basic notes, she then taught herself how to play other songs. She doesn’t play one-fingered, instead she has good fingering technique. She taught herself to play Farmer in the Dell, Baa Baa Black Sheep, Mary Had A Little Lamb and other songs. She would play and sing along, even in different keys and even uses the minor keys.

That same week, she also started riding her bicycle. We had bought her a bike a year ago as her 4th birthday present. Though genuinely excited, she could never figure out how to pedal. We got tired of pushing her on the bike and she soon lost interest. We weren’t sure whether she had such low muscle tone that she didn’t have the strength to push the pedal hard enough, or whether she wasn’t able to coordinate her limbs and senses to pedal or she was simply too young to ride. However, we knew many children younger than her who were able to pedal and ride a bike. After some time, the bike was kept forgotten collecting dust. Until she suddenly expressed an interest in the bike again. We dusted off the bike, Maya hopped on and started pedaling like she’s been doing it all her life.

Initially, we thought that it was a coincidence. That she was finally at the appropriate age to learn these new skills and physiologically old enough to master these skills. After all, I myself learnt to play the piano when I was 4 years old. But I had formal piano lessons then, whereas Maya did not. And it wasn’t as if we had been teaching Maya to pedal, we had forgotten we even had the bike.

That week was also coincidentally our first round of DMSA chelation. Yes, it was ironic that we started chelation AFTER Maya officially recovered from Autism. Throughout her biomedical journey, we had to prioritize her treatments based on her most pressing issues. So, finally we got to the point when we were ready for chelation. We had been doing the prep work prior to chelation the 2 months before, prepping her body by adjusting her mineral levels, testing for her current Red Blood Cells Minerals levels, testing for her kidney and liver function, Urine Prophyrins test for heavy metals body burden levels, then doing the pre and post challenge test to make sure that the dosage was right and that we got a good excretion rate. Once the results were back, everything looked good and our doctor gave us the green light for our first round of DMSA.

We saw the doctor a couple of weeks after we completed the first round of DMSA and he asked whether we saw any improvements in Maya. Paul and I explained that it was hard to tell if there was any because Maya was just remarkable all the time, every single day. We said that either there were either no improvements from it or any gains that were made was too small to notice. But we did mention about Maya’s piano playing and bike riding which occurred within the first few days of the DMSA round. Our doctor immediately said that it’s probably the chelation which has brought on this new burst of coordination in her gross and fine motor skills. But Paul and I said that it was just a coincidence.

We put his remarks aside, thinking that he was just searching for improvements when there was none to be had. After all, most parents only report improvements from chelation after several rounds, usually after 12 rounds. This was only our 1st round.

However, a conversation with a friend later that week changed my mind. I casually mentioned that we had just done our first round of DMSA. He had started chelation for his son a few weeks earlier. And I laughingly told him about how the doctor was pressing me for some sort of positive response to the chelation, even though it was too soon to tell. His next words stopped me cold- he said that his son started to ride the bicycle right after his first round of DMSA. He said that something just ‘clicked’ in his son and his coordination finally kicked in. Apparently, he had been trying to teach his son to ride the bicycle for ages before that, but he just couldn’t seem to grasp how to pedal. He is convinced that chelation was the catalyst.

I then told him about Maya’s piano playing and riding the bicycle. So, even after all these years, it was nice to be reminded again of how Biomed is helping us realize Maya’s full potential. Sorry we doubted you Doc.

We had only done 2 rounds when Maya experienced fierce Candida flare-up. As you know, yeast tends to flare-up during chelation. Maya started to exhibit Candida symptoms again and as she was due to start in a new kindergarten so we chose to postpone chelation for a while. We wanted to deal with the yeast first so that Maya could start school at her best. We have dealt with yeast many times, so yet another flare up doesn’t bring about the same anxiety and stress as it used to. A round of natural antifungals did the trick and we are now on to our 3rd round. We started chelation quite late by most standards, our methods still are slow and steady. But it has served us well.

Yesterday, I heard Maya singing a new song, it sounded very much like the first refrain from Rihanna and T.I.’s song Live Your Life. Maya was going “Maaa ya Hii, Maa ya ho, maaya hii, maaa ya ha aa”. I asked her what song she was singing and where she heard it. She said “I heard it on the radio” I have never played any of Rihanna’s music with Maya before, so I knew she didn’t pick it up from home. Then I asked her where did she hear the radio, she replied “At baby Rekha’s house”. Now I remember, we went to a birthday party at Rekha’s house 4 weeks back. They played pass the parcel and they played pop songs for it. And yes, Rihanna was playing that night. It was a fun and noisy party that went on until quite late. The music was blaring, there were many children and adults, lots of activity and mayhem. A year ago, we couldn’t even contemplate going to the party, the sensorial overload would have been too much for Maya to bear. Not only did she fully participate in all the games, she had lots of fun and didn’t even require Mum to accompany her. How far we have come.

Not only was I continuously amazed at Maya’s memory, she also has perfect pitch. Maya has never sang that song before to our knowledge since the party, neither has she heard it since. However only the night before she had her first DMSA dose for the 3rd round of chelation. She’s had her 2nd dose last night, let’s see what other nice surprises Maya has in store for us today. Am I grasping at coincidences? Maybe. But I am seeing wonderful improvements every day. We are looking forward to more piano recitals, impromptu arias and bicycle rides……

>Heart Full of Courage…..

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Due to several reasons, we chose to move Maya to yet another kindergarten, her 3rd mainstream Kindy so far. This time around, we decided not to have a shadow aide to assist her in the first few weeks of the new school. More importantly, we chose not to inform the school of Maya’s history and diagnosis. We did not want the new school to have any preconceptions of Maya and we wanted to see if Maya could fully integrate into the new school without any special help. We were warned that moving Maya so soon to a 3rd school and without any shadow aide was a terrible idea. Against all professional opinions, we chose to do it our way, as usual. 
The last few weeks in her previous school, I had told Maya that soon she’ll be going to another new school for big girls. Soon she’ll be saying goodbye to her current school and she’ll make some new friends at the new school. Kids being kids, she took it all in stride. Yes, she understood what I told her. I had driven past the new school a couple of times to show her the new school. We had a little farewell party at her previous school on the last day of school. She said goodbye to all her teachers and friends and everyone gave her a big hug. It was hard to say goodbye yet again, however we felt that this was for the best. 
Both girls are now in the same school, finally. It was a relief to drop them off and pick them up from the same school, no more driving to 2 different locations everyday. Both girls now are on the same school holiday schedules, we used to have 1 girl in school and the other girl at home for holidays. We couldn’t go on family holidays as both schools were on differing schedules. It was easier for us logistically as well as in other ways. 
We brought Maya and Yasmin in for the first day of the school term in early September. There were scores of other students starting their 1st day in school too and other new parents. We introduced them to the principle and their own homeroom teachers. Then both the girls went to their respective classrooms with their teachers. Maya is in the older class with other 5-6 year olds and Yasmin in the 3-4 year old class. Paul and I hung around for the next half hour to observe both girls. By then, both girls were fully settled in their class and participating in the day’s activities. I said goodbye to Maya and told her that we’ll be back to pick her up at the end of the school day. She said bye and turned her attention back to her task. Paul and I stayed nearby the school, in case we got an emergency call from the principle. We were anxious and worried, after all, we just left our 4.5 year old and 3.5 year old daughters in a brand new school after only 30 minutes.  I worried that Maya would be anxious in the new environment, new teachers, new classmates and strange schedule. As usual, Maya surpassed our expectations.
When we came to pick them up, Maya and Yasmin were both smiling and beaming. Both girls told us of the happy things they did that day, Maya more eloquently than Yasmin. From the 2nd day onwards, we dropped them off at the school gate and we didn’t need to stay.
A few weeks before starting her new school, Maya was experiencing slight regression due to Candida overgrowth. She was a bit unfocused, her eye contact deteriorated and at times her echolalia would return. She also tended to talk on and on, not noticing that her classmates were no longer paying attention, she would go off on a tangent and ramble off the topic. We put her on a course of anti-fungals and hoped that it would be resolved before she started her new school. I wanted her to be at her best in the hopes that it made it easier for her to navigate the new social challenges that a new school demanded. 
I also told Maya that when she’s in class, we should be quiet. We should not talk unless the teacher talks to us first. We should pay attention in class and do our work. I wasn’t sure whether she understood the lesson I was trying to teach her, but I hoped some of it would sink in. 2 weeks ago, Paul and I requested a meeting with the girls’ teachers. The school explained that it wasn’t time yet for the usual progress review, but we insisted. They very kindly accommodated us. We sat down with the principle and Maya’s homeroom teacher, they explained that she is a bit quiet in class, she has made friends with all the girls and she already has a best friend. They also remarked that she is very eloquent. The teacher noticed that Maya has very firm likes and dislikes when it comes to food during lunchtime, refusing soft, mushy porridge and doesn’t want to eat fruits. I explained that Maya has always been a picky eater and requested that they continue to encourage her to expand her food choices. However, most lunchtimes, she happily sits with her classmates at the table and eat the same foods served in school.
The teacher also said that Maya needed to be reminded to finish her worksheet, not to hand it over before it’s completed. We asked if other children were able to complete their worksheet without prompting, and the teacher and principle assured us that all the other students were the same as Maya. All the kids needed to be prompted to do their work correctly and to complete the task. Phew, I was worried there for a moment. Maya’s favourite subjects are Music class and gym. She loves doing science experiments and her Mandarin articulation is excellent. Maya joins in every activity and completes every task required. Her handwriting isn’t great but her reading is above her age level. Overall, the teacher is very pleased with Maya and didn’t have any issues to bring to our attention except for her refusal to eat porridge and fruits.
Maya turned 5 years old last week. So we had a little birthday celebration for Maya in school. The school has a birthday ritual called the Birthday Walk. The birthday girl walks around the globe the number of times as her age. The parent will show some photos and tell her classmates of her life. I had brought in a birthday cake and the teachers helped to put up some photos to show her class.  Maya was very proud to hold the globe and walk around. She blew out the candles and cut her cake. She also told her classmates and teachers about each and every photo. She is a great little speaker, her teachers told me later on how great her speech was. Her classmates were very nice kids, Maya was part of a clique of girls and played well with each other. It was heartening to see how well Maya was doing. 
I noticed several other kids in Maya and Yasmin’s class who still needed either their mum or nanny to be present in school and kids who would cry for their parents after being dropped off. I thought that I would have to be at the school for at least a few more weeks before Maya was comfortable being on her own. I expected the teacher and principle to talk to us of any p
roblems with Maya. She seems to be just like any other student there. 
We were told that we were pushing her too hard, that Maya was not ready for another new school, that she was not ready to be in school without a shadow aide, that Maya will experience terrible regression, anxiety and failures. As usual, they underestimate just how high Maya can soar.  My daughter is brave and intelligent, her heart is full of courage.  She bravely takes up every new challenge and obstacles in her path, she conquered Autism. She continues to conquer every social challenge and sensorial assault till this day.  Her strength and resilience is humbling. She makes me proud of her every single day. 

>More Recovery Stories

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>In the past few years of living in Autism-Land, many people have come up to me and said that they have never heard of recoveries in Autism. We are told that Autism is a life-long disability and that behavioral therapy is the only treatment available. Before Maya was diagnosed, I have never even heard of Autism (except for Rain Man of course) therefor I didn’t have much of a pre-conception about the prognosis. The first ever book I read which also gave me an inkling that Maya probably had Autism was by Jenny McCarthy. Her son recovered from Autism. When we finally received Maya’s Autism diagnosis, I vowed that I will recover Maya. If Jenny can do it, so can I. Whether we live in USA or Malaysia, Autism is Treatable. Please read the article below courtesy of my favourite Autism magazine, The Autism File. 

No Longer Autistic by Lisa Mize
Courtesy of Autism File

>Treatment Protocol Plus A Dose of Fun

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With every treatment or supplement we do, we always do it with the advice of a medical doctor. We follow the set protocol and usually get 2nd opinions on nearly everything. I don’t try out anything without a doctor’s recommendation or advice, I am very conservative and like to go slow and steady. I never start more than 2-3 new supplements in 1 month. I always start at a low dose and slowly work up to the recommended dosage. We keep meticulous record of everything we do and keep track of any side-effects, bad reaction or improvement made with each supplement or treatment. Though a lot of parents are brave and bold enough to implement a treatment or do biomedical treatments without the guidance of a doctor, I’m quite conservative. Slow, safe and steady has been our approach and so far, it has served us well. To a lot of other parents, my approach is very slow and far too conservative for their liking. However, we all have our trusted methods, this so called “slow” approach has given us tremendous progress. This is a brief overview of our treatment plan since we started biomedical treatments.

As you may know, we started on the GFCF diet and didn’t pursue biomed for another 6 months. Once we started intensive treatment, sleep and constipation was high on our list of priorities. Then I wanted to address Maya’s other gut issues. Next, we started on our first round of anti-fungal treatments, this is one of her biggest problem. At the same time, we addressed her oxidative stress. We then addressed her inflammation as well as implemented a biofilm protocol. After that, we worked towards prepping her for MB12. We finally found the right dosage and frequency for MB12 and saw amazing results.

We have done several tests at different points in time, some more than once depending on the need. We tried an anti-viral treatment with good results, but we couldn’t pursue it further for the moment and had to be put on hold. We then concentrated on her methylation cycle – all the methyl donors eg Taurine, N-Acetyl Cystein, Folinic Acid, TMG and MB12 worked amazingly well for her. Each supplement showed good reactions; Maya was calmer, there was a sudden leap in clarity, cognition and language. We continuously had to address yeast overgrowth from time to time. We were also working towards balancing her immune system. We also investigated strep for possible PANDAS (Paediatric Autoimmune Neurological Disorder Associated with Streptococcus) though thankfully this turned out to be negative. Her long-term issue with dressing and wearing clothes were addressed, as well as finally able to toilet-train.

From time to time, some new issues would come to the fore such as her negative thought process and recurrence of anxiety and controlling behaviour. This was resolved quite quickly with the help of our doctors. Currently, we are prepping her for chelation and have just done the pre and post challenge test with showed a good excretion rate. Recently we did another round of the RBC (Red Blood Cell) test which tells us the levels of minerals, this is by far the most accurate test for mineral levels. We also did the kidney and liver panel again as well as viral panel to test for a range of viruses.

As always, for every treatment we have done successfully, there are always several supplements or treatment that were either ineffective or worse, caused regression. However, by only introducing one new supplement at a time and close monitoring, we were able to quickly identify the cause and immediately address it. At times, there were regression due to illness or side-effect from certain treatments, however each and every single time she always recovers the skills and progress made and comes back to the level where she was previously. There are shelves full of half-opened bottles of supplements that we no longer use, though it seems like a waste of money, we would never have known if those supplements or treatments would have worked for us or not. Looking back, we tell ourselves that we tried it. Some treatments have shown amazing results, but as with life, sometimes failure happens. If a treatment failed, we try again and keep going forward. We try to maintain a positive outlook and try to see the funny side of things whenever possible.

Maya is recovered from Autism and no longer requires behavioural therapy or special services. However, we still continue to pursue biomedical treatments to address other lingering health issues. Our challenges for this year will include addressing her heavy metal load especially mercury and will start chelation with DMSA very soon. We will investigate further into viral infections and we continually seek to address her immune dysfunction. Occasionally, she is prone to colds, flus and fevers.

Maya is a happy little girl who is thriving well at school. She has lots of friends and enjoys the same activities as other little girls. She has taught herself to play simple songs on the piano and loves ballet classes.  Maya  has a great personality and has the same sense of humour as her daddy. They have great fun and adventures together and you can frequently hear them giggling and laughing over some private joke together. 

>Art Class and Spooky Stories. But Why??

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>Maya has been doing an Art Class with a neuro-typical girl with an independent Art teacher. Maya really enjoys it, as Ms Rita the Art teacher has taught them some wonderful arts and crafts projects. I purposely did not mention Maya’s diagnosis to the teacher, as I wanted to see how Maya would cope with a new teacher whose teaching methods were for typical kids. I was very apprehensive how Maya would react to receiving instructions and whether she could follow the class. To me, the arts and crafts they did seemed far more sophisticated than Maya was used to.

It wasn’t just scribbling here, they had to paint within the line! They had to hold the paintbrush in the pencil grip! To my amazement, Maya was excited yet calm and listened carefully to the teacher’s instructions. She followed the design layout, chose the colors she wanted, she painted and cleaned her brush and blotted it just like the teacher asked. Her artwork came out amazing. Even more amazing, throughout the class, she was chatty with her friend and the teacher. She was having fun and was totally comfortable with the whole thing.

For the past 2 weeks during ABA, the therapists have been teaching Maya how to tell a story. This is to prepare her for her Speech and Drama class at her kindergarten. “Mummy, my favorite class is Speech and Drama!” she once said. Recently, she showed us how amazing her story telling abilities were. Maya told us a 4 minute story that was full of twists and turns, totally unscripted and all from her own imagination. Everyone was blown away, luckily I took a video of it. Otherwise I myself would not have believed it happened.
Last week, Maya came home from school and told me “Mummy, I love going to outer space. I can wear a spacesuit, I can be a pretend hedgehog and be a Space Hedgehog!” When I asked her what she wanted to do in space, she thought about it for a minute. “I’ll go to the moon to get cheese and biscuits” was her reply.
She had mastered some “Wh” questions such as Where is, what is and who is. However, the Why’s have been a bit slow to come by. Recently, she started asking Why questions left and right. When she saw me giving a syringe of medicine to Yasmin, she asked me “Mummy, why do you give Yasmin medicine?” When I said it was because she is sick, Maya asked me “Why is she sick?” I replied because she’s got a fever. And Maya asked “But why does she have a fever?” By this point, I totally ignored the principles of good parenthood and instead snapped at her to be quiet and go play elsewhere.
Yesterday, my mum told me of a conversation she and my dad had with Maya;
Maya – “Opah, who are you?”
My mum – “I am your grandmother”
Maya – “Why are you my grandmother?”
My mum – “Because I am your mummy’s mother”
Maya – “But why are you mummy’s mother?”
My mum – “Errr, why don’t you talk to Atok”
Maya – “Atok, who are you?”
My dad – “I’m your grandfather”
Maya – “But why Atok, why?”
Last month, our biggest issues with Maya was her anxiety and negative thought process. She would get extremely agitated when things don’t go her way immediately or if we wouldn’t give in to her requests. When extremely upset, she would start shouting and her voice would become high pitched again. We heard a lot of “I need it, I need it!!” and “You must do this, you must!!” from her. Maya’s anxiety level was at it’s highest that we have ever observed.
Maya also started to get obsessed with dark and scary stories. All her stories would end up being about spooky forests, evil witches and monsters. She fixated on the color black and wanted to paint everything black at art class. This was very worrying to Paul and I, as her negative thought process was getting more and more pronounced. Everyone commented on it, teachers, therapists, my parents and friends. We feared that she was going down a depressive road and that she would have a tendency for depression or bi-polar disorder in her teenage years.
She started having issues with getting dressed again. She would refuse to wear clothes, instead she would huddle naked on the floor after a bath, refusing to get dressed.
We changed her Cod Liver Oil to Evening Primrose Oil as this would help with anxiety. I reintroduced TMG after a short break because we had run out of stock and this brought about another burst of language in her. And just like before, TMG also caused her to tolerate wearing clothes again. We added 5-HTP as this would help with her anxiety issues. This past week, we noticed there were less anxiety and negative thought process. She is happily wearing different clothes. A couple of days ago, Maya talked on the phone to my friend. “Auntie Sherly, I like your wedding. I like to wear wedding veil. I had a party and we ate cake. Do you like to play dress up? I like playing dress up. I can wear a wedding veil and a ballerina tutu.” I finally put a stop to the conversation and told Maya that Auntie Sherly can’t talk to her anymore and she had to put down the phone. To which Maya asked “Mummy, but why??”

>Favorite Subjects at School

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We are gradually transitioning Maya into a mainstream kindergarten for the past 2 weeks. Together with a shadow, we started Maya for 1 hour a day every day at the new school. Meanwhile, Maya still gets at least 5 hours of intensive ABA everyday. She immediately liked her new teacher and she has enjoyed every new experience. So far, she has done a science experiment, a music and dance class, a speech and drama session, learnt Mandarin in school and gone on a field trip with her classmates.

In the past 1 week, Maya has mastered writing her name, day and date on top of her worksheet. Maya has learnt to write her name a long time ago, but she only learnt the days of the week and month only a few weeks ago with ABA. She learnt the names of the day and month, but she has never learnt how to write it down. We have not taught her how to write numbers either. Initially, she needed a bit of prompting writing down the date, but once she learnt how to look at the blackboard and copy the words and numbers down, she is doing well.
Writing is a difficult task for her, her fine motor skills are still something we are working on. She surprised me a few days ago when I asked her what day it is. She said “Today is Thursday” and I asked her to write down the word. There was no prompting or visual guide, yet Maya was able to write and spell it correctly. We are also working on reading during ABA, she can sight-read quite a few words already, mostly 3-4 letter words.
She communicates well with all her teachers and happily takes part in all the activities. She interacts well with the other kids but she has yet to make a best friend in class. She raises her hands to answer questions and always gets the answers right. She loves going to the school library and borrowing a book. Maya is compliant with wearing the school uniform and socks everyday, even the PE uniform which is a round neck white tshirt and plain red shorts. As you may know, this is not an outfit that Maya would ordinarily want to wear.

Last week was Maya’s first exposure to science and she learnt about soluble materials. She listened to the teacher’s instructions and carefully did her experiment without any help from the shadow aide. She was extremely excited and told me all about it after school “Mummy, I made a soluble!”
Maya has always loved music and dancing, but as this was her first time with a new music teacher I was naturally apprehensive. There were also more children there, the acoustics of the room was louder and more echoey and the format was different. I peeked in and saw Maya happily joining in on the fun, dancing around the room with the other kids, waving a handkerchief on a stick in time to the music. Later on in the car, Maya said to me “I did a handkerchief dance, Mum! The music teacher’s name is Ms ****”
The school had organized a field trip for Maya’s class to the fire-station. We were keen on Maya joining in all the activities and our ABA team helped prepare Maya for this big adventure. As much as I wanted to expose Maya to the real world, I was still apprehensive about the school trip. She had never been anywhere without us before apart from with her grandparents. She would be going on a big schoolbus with 25 other kids. Even though she will be accompanied by her shadow aide, I worry about the strange environment, the many kids and the fact that Maya had never been on a bus before. Also, she has had a lifelong fear of men, we were not sure how Maya will react to the firemen.
We were told that Maya really enjoyed the bus ride and the singing with the other kids. She made immediate friends with other girls that were in the other class (same age group, but different class). She listened carefully to the fire safety lecture by the fireman and watched a demonstration of the fire extinguisher. She did not want to climb on the fire truck but most of the girls didn’t, mostly the boys did this. She didn’t want to try on the fire helmet either, but neither would I, who knows how many sweaty smelly heads it’s been on!
When the firemen demonstrated how they slide down the pole, she told one of the fireman to do it again! And she also tried out the water hose with a little bit of help from the friendly fireman. It was hot, noisy and strange and my daughter took it all in stride. Not only did she conduct herself well, she also enjoyed herself. It was a big big milestone for us, words cannot express how proud we are of Maya.
Today, we extended the school time to 2 hours. It was her first time with a new subject, Mandarin. The school has a multi-lingual curriculum, English is the primary language however there is a Mandarin class every day. There are always 2 teachers in the class, one who speaks and teaches in English and another teacher who only speaks in Mandarin. However, for students whose parents do not wish to emphasize on Mandarin language skills, the school has a more relaxed policy for those kids.
There is also a Bahasa Malaysia class 3 times a week, but we will introduce Maya to that a little bit later as the time of the class is not suitable right now. A year ago, Maya could barely even speak English, now we’re introducing her to a 2nd language and soon a 3rd language! Even though Maya is half-Malay, I have never spoken to her in my mother tongue. Unfortunately, due to her language delays, it was better that we only speak in one language so as not to make it harder for her to learn how to speak.
However, because we live in a multi-cultural city, Maya has been exposed to many languages. She hears me talking in Malay to my parents, our maid speaks Filipino to her friends, we hear Chinese and Tamil spoken on the street every day. One of the many joys of living in multi-lingual Malaysia, many of us speak 2nd and 3rd languages. So I assume that she won’t be fazed by a strange language. Right enough, Maya really enjoyed Mandarin class. She has excellent intonation and could pronounce all the words really well, said her teacher.
Our immediate goals now will be to extend her school hours till she is able to attend the full session everyday. And gradually we will phase out the shadow aide. Our ABA team has done a wonderful job preparing Maya for this big transition. They continue to support us daily by brushing up on skills that Maya has never been taught before yet are essential in a typical school environment. A comprehensive ABA program combined with intensive biomedical treatments have brought us here, we are closer and closer to recovery every day. For a child who was diagnosed with Autism 1.5 years ago, Maya is definitely proof that Autism is Treatable. There is always hope of recovery.
In Speech and Drama class last week, all the kids made a little speech about what they did during the holidays. Maya listened carefully to all the other kids’ stories and listened to the teacher’s instructions. Her shadow aide did not prompt or assist Maya in her speech, all she told Maya was that soon it will be her turn to make a speech. When it was Maya’s turn, Maya talked about our holiday in Sabah, how we all played and swam in the pool and when we saw the orangutans! It was all unprompted and completely accurate. Her class teacher, the drama teacher and the shadow aide were there and they were amazed by how eloquent Maya was.
Later that day, Maya told me “I made a speech today, Mum! Ms Lizzie is my favorite teacher!” We went to Sabah in December, 2 months ago. It was gratifying to know that the effort and cost of going on family holidays was memorable to our little girl. I pray that she has many h
appy memories stored away in her mind, hopefully one day she will tell us all about it. I hope we will continue to fill her memories with good ones, may the bad ones be long forgotten in her mind.

>Bathrooms, Big School and Uniforms….

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Every little milestone my girls achieve is another celebration in my home. Big or small, whether it was at age-appropriate developmental milestone or if it came 1.5 years later. Based on many accounts of parents with either neuro-typical or children on the Autism spectrum, their kids were toilet trained (fully or partially or only for daytime) around the age of 2.5 – 3 years old. This turned out to be a struggle for us.

Maya developed typically eversince she was born, hit every developmental milestone on time. She was crawling, walking, babbling and talking at the appropriate age. Apart from being cranky, fussy, poor feeder, poor sleeper and prone to epic tantrums, she developed age-appropriate skill sets up until the age of 1.5 years old. This was when she received her last and final vaccination – the Meningococcal C, a requirement of the New South Wales Australia Health authority. She had a combined vaccination schedule based on both Australia and Malaysia’s health requirement. This was also during the month that her younger sister Yasmin was born in March 2007. Very soon after that, we also got Maya started on drinking fresh cow’s milk.

For the next 6 months, the regression was not very apparent to us. Mostly due to the fact that we were preoccupied with our 2nd daughter. However, by early 2008 I started to notice that Maya did not learn any new skills, even though she had a large vocabulary of words, she is not progressing to actually communicating with us. She continued to communicate with us through pulling our hands or most commonly, by throwing tantrums. She did not label anymore words, she spoke less and less. Though she would talk and sing a lot when she woke up at 2am. Neither did she seek out our company. A friend actually admired me, saying that it’s so great that Maya is quite happy to play by herself, that she wasn’t clingy to me nor did she require me to entertain her all day long. For 1 second, I actually thought yes, I’m lucky. I have time to concentrate on my 2nd daughter without feeling guilty of neglecting Maya. However, deep down I yearned for her to call me Mummy. She was perfectly content to spend all day in her room, playing quietly by herself. I wasn’t quite sure what she did, but she seemed contented. There were many more signs of her regression, loss of previously acquired skills as well as the lack of new development.
After the official Autism diagnosis at age 2y8m and getting on with the work of therapy and biomedical intervention, we tried to introduce potty training when she was nearly 3 years old. No effect whatsoever. Not wanting to push it, we tried again when she was 3.5 years old. Again, no luck. We enlisted the help of our hardworking ABA team, taking her to the bathroom every hour. After 6 months of toilet training with ABA methods, when she was 4 years old in October 2009, Maya finally started peeing on the potty regularly. However, at home she would insist on using the small potty, rather than use the regular toilet. This coincided when we started her on TMG. Coincidentally, she was able to tolerate clothes better too and actually allowed us to put on nightgowns for bed. The fights we used to have trying to get her dressed was long gone.
She also insisted on wearing a nappy when doing a bowel movement. She would never poo poo on the potty or the toilet. We tried ABA techniques and used social stories. Usually, Maya responded very well with social stories and we managed to resolve quite a few issues using them. However, she was pretty verbal and had great cognitive function by then and always insisted that she can only poo poo in a nappy. She would crouch half-standing usually in a corner of the living room and strain.
By then, we had resolved a lot of her gut issues. She no longer had constipation or incontinence and we were able to keep her recurrent yeast overgrowth under control. However, 3 weeks ago she started having constipation again. She would have a bowel movement every 3 days and it was either very hard and pebbly or very soft and little. This affected her behavior and appetite to a small degree. Our usual methods of relieving it didn’t seem to work. Our DAN doctor surmised that it was another yeast infection, as yeast overgrowth can cause constipation. So we put her on a course of my favorite anti-fungal Diflucan. As most of you already know, yeast overgrowth tend to recur time and time again in our children. Historically, Maya has responded very well on Diflucan. She was calm, focused and ‘sparkling’. There’s no other word to describe it, Maya was like the real Maya that I knew existed underneath the weight of Autism.
We also did another urine Organic Acid Test by Metametrics Lab. The previous OATs was done 9 months ago, since then we have done much to address Maya’s biochemistry issues. We needed another look at her current position and see if there are other things we can fine-tune. The recent OATs confirmed high presence of yeast metabolites. Once we put Maya on Diflucan, her bowel movements became regular and the texture is normal. There was some slight die-off however it was a small price to pay for the improvements we saw later.
On the 3rd day she was on Diflucan, for the first time ever Maya allowed us to seat her on the normal toilet to do a poo poo. This was a huge achievement for Maya, we were so excited that my husband took a video of Maya sitting on the toilet doing her first poo. This continued consistently every day for the next few days.
Maya was on a 2 week course of Diflucan, however I discovered we did not have enough capsules to last us for 14 days. In the midst of communicating with our DAN doctor and trying to get more stock from Malaysian pharmacies, Maya missed 2 days of the anti-fungal. On the 1st day without Diflucan, Maya refused to poo on the toilet and demanded a nappy instead. After a consistent week of doing poos in the bathroom, I was disappointed. However we realized that by missing the anti-fungal, Maya had difficulty doing a bowel movement while sitting down. She needed to stand half-way crouched over, thus the need for nappies. On the 2nd day she missed the Diflucan, for the first time in 2 months Maya did not inform us that she needed to go to the bathroom. She had wet her pants.
Stopping an anti-fungal before the course is fully completed is akin to not completing an antibiotic course. It may cause another flare-up of yeast overgrowth. We managed to obtain more Diflucan, Maya has been back on it for 3 days now. Yesterday, she was back to pooing on the toilet again. We have been extremely lucky that when doing anti-fungal protocol or any other treatment, any regression or die-off reactions has been somewhat manageable compared to some other children. Even if there was major regression, it was always temporary and not permanent. She always got back to her previous level and managed to pick up any skills that she had lost. Her language and cognitive function is still amazing, her comprehension and compliance has consistently improved.
We are transitioning Maya to attend a mainstream kindergarten very soon. Recently I spoke to Maya and told her that very soon she will attend a new school. A big school called C******* School, with new teachers and new friends to play with. Also, that she needs to wear a uniform. Maya remembered all this and she told my mum all about it the next day when they came to visit. My parents had sent Maya off to her regular ABA school and Maya kept telling them that she needs to go to her new school C******* School and wear a uniform. I haven’t told anyone of our plans yet, so my mum was not aware of this. My mum came back to me and asked if everythi
ng that Maya said was correct. We were amazed at her memory and her comprehension, all this after only telling Maya about it once.
As you know, Maya has always had very strong preferences with clothing, preferring pretty pink dresses with spaghetti straps. So getting her used to the idea of a uniform was important to me. I told her “You must wear a uniform at C******* School. But when you go to Stepping Stones, you can wear whatever you want” Maya thought about it for a moment and declared “I wear a uniform to C******* School, but I can wear a dress to Stepping Stones”. My clever little girl worked it out all by herself! I wonder how she will do with the new uniform, it’s got short sleeves and has a blue checkered print…..

>ATEC Score

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The Autism Treatment Evaluation Checklist (ATEC) was designed for parents, therapists and doctors to evaluate a child’s response to a treatment. It is also commonly used by parents as a tool to track the progress of their child.
I have done this several times for Maya. This was a good way to track Maya’s progress, it gave me actual scores of where Maya was at that moment. The tests scores can range from 0 to 180. The higher the score, the more impaired the subject. A score of 0 indicates a child who is indistinguishable from other neuro-typical children. If you are concerned about the accuracy of the scoring, you may choose to have others such as therapists, spouse or someone close to the child do the ATEC. You can then compare the scores.
The ATEC is not meant as a diagnostic tool. In order to do a comprehensive assessment and obtain a diagnosis for your child, please contact a healthcare professional. You may do the ATEC evaluation online at http://www.autism.com/ari/atec/atec-online.htm
Maya’s ATEC scores was 100 in February 09, 35 in July 09 and 25 in December 09. Both Paul and I did this separately and we both came up to pretty much the same score. Please see below for Maya’s ATEC scores;

ATEC

Feb 09

Jul 09

Dec 09

Speech / Language / Communication

15

n/a

 0

Sociability

22

n/a

3

Sensory /

Cognitive Awareness

22

n/a

 2

Health / Physical /

Behavior

41

n/a

20

Total

100

35

25

I am overjoyed at the scores. We will continue with biomedical treatments and ABA. However, early next year we will place Maya in a typical kindergarden with a shadow. She will gradually increase her attendance from part-time to full-time. We hope that Maya will integrate well and will no longer need a shadow. How long we will need to continue with ABA remains to be seen.
From 100 down to 25 within 10 months is amazing indeed. Today, Maya is a much happier and joyful girl compared to last year. Who knows what next year will bring, but I’m sure Maya will continue and progress. We’re on the road to Recovery. She is my Warrior Princess.

>The Year That Was…..

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Coming up to the new year, I get very introspective of the past events in this last 12 months. Instead of coming up with new year’s resolutions, I choose to remember the highlights and achievements of 2009.


1 week ago, we went to a little girl’s birthday party. Previously, Maya had the most intense fear of birthday candles. Birthday parties were always a nightmare, she would cry and scream at the crowds. Whether it’s her own birthday or going to other children’s birthday parties. Previously, Maya had never blown out the candles on her own birthday cake, ever. Last week, for the very first time in her life, she blew out the candles on the cake on behalf of the birthday girl.

Last year, Maya couldn’t even make a simple 1 word request. She would instead cry or tantrum and we would have to figure out what it was she wanted. The progress in 2008 was very slow. She eventually managed to make 2 word requests. “More milk”, “Chocolate cookies” and “Daddy fix” by the end of last year. However, this year, her language and communication skills have made a huge leap. She can now talk in 9 word sentences. She can talk in 3 back to back sentences. And she has proper chats with us with back and forth conversation. Her pronounciation and articulation is at the level of a 7 year old. She can articulate her needs and feelings at age appropriate level. She made 1 1/2 years progress in speech within 7 months, her therapists, doctors and us are all amazed.

She has lost many of the stims and behaviors typically seen when she was initially diagnosed with Autism. She no longer walks on tip toes, the echolalia has stopped and she has very few tantrums. She is now able to tolerate loud noises and strange places. There is less fear of strangers and she is able to play with other children. We can take her to other people’s houses or to social events without her having a complete meltdown. She is able to concentrate and finish a task. She is no longer hyperactive. When going out, she doesn’t run away but stays close to me. Some of the behaviors relating to sensory processing issues have reduced, she no longer mouths and lick objects. She can also tolerate loud noises such as a busy airport or the sound of construction work.

Maya’s sweet nature is now showing through. She is very polite and has beautiful manners. She says please and thank you and is very affectionate. Maya is gentle and caring. She can now have short conversations on the telephone. She can grip a pencil properly now and able to make age appropriate drawings. She is currently learning how to write the alphabet and learning to read. She can spell and write her name. She can count to 100. She learnt how to drink from a straw 4 months ago and is now able to feed herself with a spoon. She can now hold a cup and drink by herself without spilling it. We finally managed to toilet train her when she turned 4 years old. And she requests nicely to go to the bathroom and so far has only had 2 accidents. After a life-long phobia, she can now tolerate taking medicine from a syringe.

She has learnt how to play simple games on the computer and able to use the keyboard and mouse properly. She has learnt many card games such as Uno, Snap and Happy Families. Uno is her favourite game and she’s pretty good at it too. She can play simple board games too. Maya now enjoys playing with her sister Yasmin. These days, the 2 girls are happy to play together and make up little games to play. She has learnt to appreciate and understand so much more now; previously when we went to the zoo, she would be concentrating hard on the toy she’s holding and not aware of the animals in front of her. Now, she loves going to the zoo, night safari, butterfly park and bird parks. Her eye contact previously was fleeting, it was very hard to get her attention. She had a very short attention span and seemed to be lost in her own world. Her awareness and cognition has improved immensely. Previously we’d be calling her name and she would not respond. Now, whenever we call her, she says “Yes, Mummy” and looks us in the eye.

She has some very girly interests now; princesses, ponies, fairies, mermaids, ice skating, baking cookies, castles, flower gardens, tea parties, wedding gowns and other pink sparkly things are her absolute favorites.

We struggled with daily chores like getting her dressed, wearing shoes, going to school and learning to toilet-train. It was a struggle every day getting her dressed. She would tantrum whenever she had to wear clothes. She also had an obsession with ballet tutus and would insist wearing it every day. She then developed a fancy to wearing princessy dresses and would wear it even to bed. She preferred wearing sleeveless string tops and skirts. She hated wearing pyjamas. Now she wears only the softest prettiest nightgowns I can buy.

Certain key supplements and biomedical treatment made a big impact in certain behaviors and skills. Once we started her on TMG in October, she started tolerating wearing tshirts and pants without any fuss at all. TMG also helped her with toilet training. Her language and cognition made the biggest progress the moment we started her on MB12 shots in July 2009. She started making 1 word requests the first week of starting the GFCF diet. Her hyperactivity and constant climbing and jumping stopped once we started her on anti-fungal treatment. She used to scratch her bottom and bite her toenails, that stopped once we addressed the skin and toe fungal infections.

She used to cry every time we dropped her off at school for the first 3 months. Now, she absolutely loves school. Music class is her favourite subject and she loves doing Arts and Crafts. Previously, going out with her was an ordeal. Now, she is a joy to be with and behaves well. We can now take her shopping, to friends house and to many other places with very little stress.

Recently I asked her what she did in school. She replied “I played Uno!” What else did you do I asked. “I did Arts and Crafts. And music class with Ms Phoebe!” What did you sing in music class? “Hannah Montana! Hannah Montana has an acoustic guitar! Miley Cyrus is a girl. ” Then I asked what she had for lunch. “I eat chicken…… not sausages.” When I checked with her teacher the next day, the teacher confirmed that all of the above were correct. The teacher also said that Maya had chicken f
or lunch yesterday, but she had sausages the previous day.

We baked christmas cookies and cakes recently. Maya said “Mummy, what are you cooking? You’re a good chef Mummy. I am a waiter!” She loves helping me in the kitchen. She helps to stir the batter, brush margerine on the cake tins, places the muffin paper cups into the tin, spoons the batter into the cups. Then she gets to decorate them anyway she likes. There’s lots of rainbow sprinkles, silver balls, sugar flowers and chocolate buttons.

A couple of weeks ago, Paul and I were in our room. Maya came in dressed in her current favorite white dress and wearing a little wedding veil on her head. She said “Look mummy, I’m a wedding girl!” I asked her who she wanted to marry, is it Prince Charming? And Maya said “No, I’m going to marry Daddy!”. I had a sudden flash forward then; I could picture in my mind Maya walking down the aisle and getting married. Someday, my little girl will grow up and fall in love, get married, have children of her own and lead a happy life. We are very proud of her indeed.

When we first received Maya’s diagnosis, we despaired that we may not be able to help our child. Our main concern was the mistaken belief that Malaysia may not have the resources and services compared to other developed countries. We felt pressured to move to Australia, the UK or USA. It took a little bit more effort, but we managed to overcome any challenges that came our way. Being a Malaysian and living in Malaysia did not stop me from helping my child. It wasn’t easy, but nothing in Autism is easy. Malaysia Boleh!

A combination of intensive biomedical as well as intensive ABA has shown us tremendous results. When we first started ABA, we were warned that ABA will turn our child into a robot. That her speech and behavior modification will be stilted and robotic. We were told that ABA methods were unnatural, that it was like training a dog. When we first started biomedical interventions, mainstream medical doctors would try to discourage us from it. Claiming that it’s unproven, it’s nonsense, that we’re wasting our money, that it will not help at all. How wrong they are…… We experienced utmost kindness, patience and dedication with our ABA team. ABA has shaped her skills and abilities. Maya’s speech is very natural, she is full of joy and life. She is certainly not a robot. Biomedical treatment has made amazing improvements in Maya’s health and behavior. We would not have achieved such rapid progress with ABA without the help of biomedical treatments. These two interventions complimented each other.

We couldn’t have done this without the help of our hardworking ABA therapists, our DAN doctors and the support of family and friends. Although 2009 has been an incredibly challenging and stressful year, it has also brought us much satisfaction and happiness. We feel that we have our daughter back, that she is no longer lost in Autism. Maya is not yet Recovered from Autism, however we truly believe that soon she will lose the ASD diagnosis. It’s so close I can smell it. We are on the way to Recovery and we hope that next year be filled with more love and joy. Happy New Year!