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>Music in the Morning

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Sensory integration disorder is a side-effect of Autism, where their hearing (auditory) and vision (visual) are not in-sync with their senses and perceptions, which in turn affects their behavior. Some children react aggressively to it, some children tune-out and retreat into themselves. 

This is why Maya falls down to the ground, rolling around and moaning in agony or screams her heart out whenever she’s in a busy and loud environment. This is why Maya used to run with her head tilted sideways and looking out of the corners of her eyes. When Maya was a newborn we just sensed that she had sensory overload. A trip to a noisy mall in the daytime would result in Maya screaming and screaming for hours until midnight. 

Gentle ambient noises would be too much for her. Being in a room full of people having conversations was unbearable. Crossing the street is excruciating to Maya, the sound of traffic, construction noises and crowds freaks her out. 
For anyone who’s had the pleasure of flying Air Asia out of their low cost terminal, passengers would have to walk across tarmacs with the sound of jet engines blasting. For someone with auditory integration disorder, this is absolute hell on earth for Maya. When she was 9 months old, our whole family took an Air Asia flight to visit my brother in Labuan. The noise and hustle of the airport was too much for her to take. For the whole 2 and half hour flight, Paul and I, our maid and both my parents took turns to comfort her. Maya was uncontrollable, she screamed and fought us with all her might. The other passengers on the flight were very kind and understanding. Everyone sensed that we were trying our best, it took 5 adults to calm her down, and not very successfully at that. 
Some people from our flight actually recognized us when we went sightseeing in Labuan, they came up to us and said “you were the guys on the plane, the one with the noisy kid”. They kindly gave us some advice on how to calm her down on flights – to put some water on her head (in order to cool her down). We just smiled.
Today, Maya has conquered her fear of the vacuum cleaner. And when I turn the blender on, instead of crying, she just leaves the room. When before, she couldn’t bear to have the radio on in the car, now she just tells us to turn it off. Recently, when driving Maya to school, I asked her if I could turn the radio on to hear some music, and now she says “Let’s listen to some music on the radio”. Now we listen to music every morning on the way to school.
On our last trip to Singapore, budget necessitates us to fly Air Asia. Amazingly, Maya walked the whole way from the aircraft on the tarmac all the way to the terminal. It was hot, noisy and busy; she just kept on walking with her hands over her ears. I’m so proud of her. 
We did not do any specialized sensory integration therapy, time and other priorities did not permit it. However, with a combination of ABA therapy and by healing some of her medical issues, Maya has reduced her sensory disorders. It took us a long time to get here, but the music sounds all the more sweeter.

>How to Start Biomedical Intervention for Autism

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For those parents whose child has recently been diagnosed, this is what I would advise you to do;
1. Make an appointment with a DAN! doctor now –
What’s a DAN! doctor? DAN! stands for Defeat Autism Now!, this organization is made up of doctors and researchers who believes that Autism is primarily medical disorders with behavioral and cognitive impairments that are by-products of the physical illnesses our children suffer. They train doctors on biomedical protocols, testing and treatments and they educate parents on effective biomedical treatments. A DAN! doctor is a healthcare professional who has attended a DAN! conference clinician’s training.
There are no DAN! doctors in Malaysia, but there’s 5 in Singapore and 2 in Indonesia. Maya’s DAN! doctor is Dr Erwin Kay in Singapore. He practices on Tuesday, Thursday (8.30am-1pm and 7pm-9pm) and Saturdays (8.30-1pm). But the clinic is open on on other days as well so you can still call to make an appointment.

Dr Erwin Kay
KCS Medical Center
Phone: 02-64438322
2. Get on the Gluten-Free / Casein-Free (GF/CF) diet now!
Gluten is wheat, barley, oats and rye. Casein is dairy, so no more cow’s milk or formula, cheese, butter, ghee or goats milk. Our children are not able to fully digest gluten & casein, it creates brain fog, has an opioid effect and causes gastrointestinal distress. We need to bring the toxic load down in our children and the fastest way to do so is by changing their diet. Our kids have multiple food sensitivities, apart from gluten & casein, you should also avoid yeast because a large number of Autism children has yeast overgrowth. Also try to avoid fish because fish contains mercury and our children usually has high levels of heavy metals including mercury, aluminium and lead. If possible, go organic. If it’s too much to do right now, at the very least please change to organic chicken.
Change your milk to Rice Milk. My favorite is Pacific Rice Milk, Vanilla flavor. It’s RM10.90 per liter at Bangsar Village Grocer. Replace breads, biscuits and pastas with gluten-free versions – Ogran have gluten-free bread mixes, cake mix and biscuits (you can buy this from Body Basics at Bangsar Shopping Center) Biologique has GFCF breakfast cereals.
3. You need to get a good Multi-Vitamin – Super Nu Thera by Kirkmans’ is a specially formulated multi-vitamin for children on the autism spectrum. Our kids need mega doses of vitamin Bs, especially B6, higher amounts of zinc, etc. This is THE recommended multi-vitamin. Kirkman’s do not accept orders from Malaysia due to customs restrictions however you can purchase it from this website http://autismangelsstories.blogspot.com/ It comes in 29oz bottles, it
can last you for 6 months. Most kids prefer liquid lemon lime flavor. Take 5ml daily.

4. Cod Liver Oil – Nordic Naturals Cod Liver Oil is the purest and certified
mercury free. You can buy them in Vita Kids shops in Singapore. Take 5ml daily

5. Probiotics – our kids really need this especially if they have gastrointestinal
problems. Always buy the refrigerated kind. Ask any pharmacy for refrigerated
probiotics, make sure it’s multi-species. The higher the CFUs the better. Minimum
of 6 Billion CFUs. Body Basics in BSC sells probiotics multi-species 6 billion CFUs
60 capsules (RM78). Quinpharm pharmacy in one of the Telawi streets has Prolecta
Multi Species 10 Billion CFUs 30 capsules (RM78)
6. Start your child on ABA therapy – ABA stands for Applied Behavioral Analysis. There are several trusted ABA providers in KL. Check out http://andiinitiative.blogspot.com/ and http://www.autismmalaysia.com/services.htm#

Even if you see the DAN! doctor, he will tell you to go on the GFCF diet, take Super
Nu Thera, mercury free cod liver oil, high doses of multi-species probiotics. These
are the baseline supplements and recommended dietary interven
tion to the DAN!
biomedical approach.

Please read up on these websites;

http://www.autism.com – this is the DAN! website, full of articles and reports on biomedical treatments. You can also download videos of conferences and more.
http://www.talkaboutcuringautism.com – fantastic advice & help from a parents’ perspective
http://www.generationrescue.org – this is Jenny McCarthy’s site, she recovered her son from autism in 2 years
http://www.recoveryvideos.com – you can download videos of parents talking about their journey into autism and how they recovered their children
There’s a lot of hope out there, so stay strong and good luck!

>Mercury Rising

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Most parents believe that their children became Autistic after the MMR vaccination. However, Paul and I believe Maya’s toxic levels built up gradually over the years because from the very day she was born, she was subjected to numerous vaccinations, some containing a tiny amount of mercury and aluminum. And a tiny bit of mercury is already considered to be toxic levels of heavy metal poisoning in an adult. Looking at her past history, she has had 14 vaccinations containing 25 live viruses within the first one and a half years of her life. 
Mercury is considered to be one of the most toxic substances in the world, leading to neurological damage and impairment of the immune system amongst others. Which overpaid executive in the pharmaceutical industry thought it would be a good idea to put it in our children’s vaccines in the first place? Why do some doctors think it’s a good idea to vaccinate our children when they’re down with a cold, flu or fever when it is clearly not a good idea to put in a live virus (sometimes 3 live viruses combined) into a sick child with a lowered immune system? So many children are suffering from vaccine injury and the numbers are rising. 
The symptoms of mercury poisoning are chillingly similar to Autism symptoms & behavior. Both report loss of speech, social withdrawal, reduced eye contact, repetitive behaviors, hand flapping, toe walking, temper tantrums, sleep disturbances and seizures as common symptoms.
Apart from thimerosal (which is a preservative containing 50% mercury) there are also other ingredients found in vaccines that are scary – aluminum, formaldehyde, monkey kidney tissue, chicken kidney cells, MSG, chicken embryo, newborn calf serum protein and many more.
What about toxic exposures during the mother’s pregnancy? A pregnant woman should definitely stay away from any kind of vaccination – did you know that the flu shot contains mercury too? What about those silver colored tooth fillings the mother may have? These metal amalgams are mercury based, it resides in the pregnant mother’s mouth, leeching into her unborn baby. And heaven forbid if she has it taken out while she’s pregnant, an unexperienced dentist may cause more harm when taking it out, because more mercury will be reabsorbed into the mother’s body. 
What about other environmental assaults such as pesticides? Studies show that the highest number of Autism cases in America is in a particular town in California. This area is also home to a large number of farms and orchards using large amounts of pesticides. Another good reason why we should all eat organic food.
For the first 4 months of Maya’s life, she would scream and scream non stop for 6 hours straight. Every day from 6pm till midnight. Occassionally she would pass out from exhaustion at 10pm. Those were magic moments to us. Up until recently, she was a fussy feeder, has severe sleep issues, constipation, terrible tantrums and incredibly sensitive to loud noises, crowds and strange places.
I’m not anti-vaccine. Vaccinations have successfully eradicated some of the worst diseases in the world. What I want are safer vaccinations for our children. Take out the mercury, create vaccinations that doesn’t trigger Autism in our children, abolish combined vaccine shots and create stricter protocols where children who are sick or on antibiotics should not be vaccinated until they are better. I want parents to educate themselves and I continue to educate myself and others, no matter how annoying you may find me. For the sake of our children.

>She's taking what??

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That’s usually the remark I get whenever I tell someone how many supplements Maya is on. She’s on 14 different supplements and the list is growing. In Malaysia, we only know about the many types of therapy like Applied Behavior Analysis (ABA), Floortime, Relationship Development Intervention (RDI), Sonshine, Occupational Therapy, Speech Therapy, Music Therapy, the list is endless. There’s even Light Therapy, Horse Riding Therapy, Dolphin Therapy and we’ve got therapies coming out of our ears!

However, Biomedical Intervention is a relatively unknown part of Autism recovery in Malaysia. Defeat Autism Now! (DAN!) is a movement headed by a group of dedicated doctors, researchers and parents whose main purpose is to educate other doctors, healthcare professionals and parents on the types of treatments available for our children. Through years of research and data collection, DAN! believes that Autism is not a neurological or brain disorder. This is in complete opposite to the mainstream medical community that believes that Autism is caused by genetics SOLELY and that it’s unrecoverable. 
DAN! and I personally believe that there IS a genetic predisposition, however the Autism is triggered by Environmental assaults such as toxic overload, pesticides, heavy metals especially mercury in vaccinations, resulting in impaired detoxification and gastrointestinal distress. With a combination of diet, nutritional supplements, other treatments and a lot of hard work, Autism Is Recoverable. 
So, back to the 14 supplements Maya is taking – as you know we’ve done extensive medical tests and the results show that Maya has oxidative stress, gastrointestinal dysbiosis, she requires high amino acid support, she has high levels of mercury, aluminium and traces of arsenic, there are marked nutritional deficiencies especially zinc, calcium, vitamin Bs especially B6, multiple food allergies, leaky gut, severe lack of beneficial flora, yeast and fungal overgrowth, lack of essential fatty acids and impaired detoxification amongst others.  

Paul and I became very disenchanted with the medical community in Malaysia because there is either very little awareness of Autism amongst doctors, and the ones who have heard of Autism is unaware of the underlying health problems our children have. Because Autism is such a bold label attached to our children, plus our kids exhibit many disturbing behaviors such as hand flapping, spinning, loss of eye contact, grunting & moaning, injurious behaviors to self and others and weird body movements, doctors tend to get blinded by the behavior and are reluctant to see the person behind the Autism label. But if our doctors are willing to open up their minds and see past the label and do a proper medical assessment, we’ll usually find several medical problems which are treatable. 
By addressing the health issues, we may not recover the child fully from Autism, however we would be doing them a great favor by improving their health, take away their physical pain and that they would have a better quality of life. Remember all those therapies that us parents pay a load of money for? How do you expect our kids to learn effectively if they are chronically sick, unwell or in pain?
Because there are no DAN! doctors in Malaysia, we go to Singapore every month to see Dr Erwin Kay. There are 5 DAN! doctors in Singapore and 2 in Indonesia. I would love to see a Malaysian doctor attend the next DAN! conference and doing the clinical workshops, because I’ll be there!

>Milk, milk and more milk!

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Milk is a favorite subject between Paul and I. Mainly because before Maya was diagnosed, we noticed how much she loves her milk. I breastfed Maya until she was 7 1/2 months, we then gave her formula and moved her on to fresh cows milk when she was 1 1/2 years old. Maya has always been a picky and fussy eater, however she would guzzle up her milk and and is a carb junkie. She would happily exist on milk and bread all day every day if not for the fact that I’d managed to force feed some protein and vegetables into her. 

When she was diagnosed, we had already known about the GFCF diet – gluten free and casein free to those who aren’t familiar with the lingo. I had read Jenny McCarthy’s books and heard about the DAN! protocol and the science behind the GFCF diet for children with Autism. Paul and I began to notice how addicted Maya was to her milk & bread.  In certain children, gluten & casein gives them an opioid effect, creates brain fog, they are unable to digest them, causing a host of gastrointestinal distress and the list goes on about the efficacy of the GFCF diet for children with Autism. 
We could see that Maya would literally get `high’ after drinking milk. I feel terrible about it now, but Paul and I would laugh watching how stoned Maya would get after having a big bottle of milk. She’d be all woozy and dopey and we thought it was funny. After the diagnosis, we immediately put her on soy formula and substituted her favourite foods and snacks for gluten-free versions. Within 1 week, Maya said her first 3 word sentence, within 2 months combined with intensive ABA therapy Maya learnt to request for things properly instead of screaming and tantruming.  
After a while, we figured that she was sensitive to soy and we changed it to rice milk. It took time to find suitable flavours and brands that Maya would like and there’s not much varieties to find in KL. We would spend RM10.90 for a carton of rice milk!! And a box of gluten-free bread mix is RM16! Our grocery bills are getting higher and higher. 
And being the worrisome Mummy that I am, I started to obsess that Maya would gradually build up an intolerance to rice. God forbid, because Maya’s diet revolves a lot around rice (being nature’s perfect gluten-free food) I certainly didn’t want that to happen. It’s recommended that we rotate their diets because these children have a tendency to build up an intolerance to certain foods if they’re consuming too much of it. Finally, we managed to get a supply of Potato Milk. 
So, from breastmilk to formula to soy milk to rice milk to potato milk. What’s next I wonder? I used to envy those parents who managed to wean their kids off the bottle by this age, but for the moment I’ll keep Maya on the bottle as long as I can, because it’s the only way I can get her to take her 12 different supplements daily by smuggling it into the milk.
For those of you starting to embark on the GF CF diet and wondering how the heck you’re going to change your child’s milk, start with substituting a quarter of the new milk mixed with 3/4 of the original mix. And increasing the amount of the new milk gradually every 3 or 4 days. Within 2 weeks you’ll have complete conversion. I suggest trying Pacific Rice Milk, Maya seems to prefer the Vanilla flavor. Soy milk is not a recommended substitute for casein milk because soy seems to be a common allergen for our kids. Otherwise, do an IgG Food Allergy panel (not IgE) to check for food sensitivities. Good luck!

>Poop Smugglers!

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When we went to see Maya’s DAN! doctor in Singapore, we did some medical tests which were not available in Malaysia. We have done hair analysis, blood tests, urine & stool samples. Because Maya is still not potty trained and with her constipation issues, we could only fill in the test kits once we got back home to KL. 

After painstaking efforts to collect urine and stool samples (gross, but someone had to do it) we had to place it in the containers and prepare the samples accordingly. It wasn’t just a matter of putting the samples in a sterile container, these tests had several specially prepared containers with different liquid preparations in them which we had to mix the samples in. Then we sealed up the test kits and packed it carefully together with ice packs in order to maintain ‘freshness’.
For 3 whole days I went around KL with the samples in my beloved Fendi handbag, going from postoffice to numerous courier companies begging them to send it to Singapore. In my naivety I `declared’ the contents of the shipment; naturally no one wanted to deliver human remains. Even after getting a letter from the doctor, obtaining special shipment declaration etc., I was getting nowhere. 
I was getting increasingly frustrated. There’s a certain time limit for the samples to be viable, and we were running out of time. Those test kits are very expensive (RM1100 for the urine test and RM1300 for the stool test) so failure was not an option. 
With 1 day left before I had to fly off to Atlanta, Paul volunteered to get on a Jet Star flight and deliver it personally to the doctor. My heroic husband was trying to look cool while the the airport authorities scanned his hand luggage. He was carrying a bag loaded with stool & urine samples and several ice packs.

Luckily, he made it through. I wonder how Customs officials would react if they knew what Paul had in his laptop bag. The test results have come back, we’ve gained some very important information and we can now go forward with her treatments. 
To this day, I swear my handbag still stinks after the humiliation I subjected it to. Note to self, treat couture with respect.

>Sunday Brunch at McDonalds

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I attend an Autism support group that meets regularly once a month. Our talks usually revolve around types of behavioral therapies, advice from experienced parents and most recently there’s a marked interest in biomedical intervention for Autism. It’s been exactly 1 year since Maya’s diagnosis and since then we have implemented the DAN! protocol for biomedical intervention to some success. Maya is now 3 1/2, attending an ABA `school’ and is a happier girl compared to a year ago. 

There’s a lack of awareness as well as resources for Autism in Malaysia in general. And biomedical intervention is virtually nil. Paul and I feel that we have exhausted nearly all that Malaysia has to offer in terms of biomedical treatment for Maya. We now visit a DAN! doctor in Singapore (this is our 2nd one), I’ve read numerous books (mostly purchased online from Amazon.com), research the topic on the internet daily (I commit 3 hours a day), talked to as many people as possible (I’m now one of those aggressive parents I used to dislike who go up to a perfect stranger especially at hospitals and doctors’ waiting rooms and ask intimate details of their child’s diagnosis and what treatment/therapy they’re doing) And flew halfway across the world alone to attend a DAN! conference. I’ve persuaded Paul to take some time off his busy schedule to meet with a doctor in Australia when he’s there next week for some meetings and I’m constantly in touch with other parents all over the world for advice and support. 
In the 1 year that we’ve journeyed into Maya’s recovery, nothing beats the irony and bizzareness that was last Sunday morning. I volunteered to be this month’s `guest speaker’ and give a presentation on biomedical intervention. Arriving at our usual meeting place, we were greeted with pitch darkness from the electrical power outage and blinding heat (being the typical Malaysian weather). So off we go and moved to the poolside area to find a place with a cool(ish) breeze and hopefully with a working power socket. I’ve spent weeks coming up with a 48!! slide presentation  and arranged to have a projector on the day. In true Malaysian fashion, things never go according to plan.
Long story short, we were kindly `escorted’ off the premises and we ended up having our support group in a nearby McDonalds! Imagine the irony, here we were a bunch of dedicated gung-ho parents with a deep concern for our children’s health and nutrition, in a McDonalds. So while slurping our supersized Cokes and munching on Egg & Beef Bacon McMuffins (they ran out of Orange Juice and no, we don’t get Deli salads in McDonalds here in KL) we sat down and talked about the importance of a healthy diet and vitamin supplements. Nobody blinked an eye when I started talking about poops, nobody complained about being pushed around all day, nobody was annoyed when the shockingly obese little boy started climbing the jungle gym noisily next to where we were sitting. 
Everyone banded together in true support group fashion (these are the best bunch of parents ever!), patiently listened when I talked about GF/CF diets for the dozenth time and shared my experience on what has worked for Maya and what has not. Everyone shared their concerns and opinions. There were offers to help get supplements for others because most of these items are not available in Malaysia. Paul and I came back feeling motivated and strengthened. That’s what a real support group is. 
Our beloved support group leader commented that nobody seems to be angry or annoyed when we had to move here and there and that everyone seemed to be happy and cheerful in the face of extreme KL heat and that we were losing valuable time. And I said that this is a very small set back compared to what we have been through as Autism parents. 
We all have our personal stories of grief, defeat, negativity, set backs and lots of blank walls in our journey to recover our children. We’ve encountered many bleak prognosis, anger at quacks who are out to scam our money with hopes of treating our child, sadness at family and friends who put down our efforts, growing worries about dwindling savings and finding more money to fund the next treatment, despair when our children seems to retreat deeper and deeper into their world, feelings of hopelessness when our children for the hundredth time fails to look us in the eye or to reciprocate our attempts to reach out to them, the lack of support and encouragement from loved ones. So, a power blackout and a noisy McDonalds on a Sunday morning is but a mere hurdle for me and my friends. 
Thank you to all of you who’ve supported and encouraged us throughout this difficult year. The kindness of family friends who’ve taken the time and effort to find out more about this puzzle we call Autism humbles me. Thank you to Maya for showing us the joy in our lives, but for her condition we would never appreciate what we have nor would we see the rainbows in the sky after a storm.