Category Archives: feeding disorder

>The Picky Eaters Club & Smuggling in Supplements…..

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Feeding gluten-free bread to the cockatoos

I belong to this club, well, my kids do. They are both extremely picky eaters, feeding them supplements are still a challenge till this day. So my membership is by default, though not by choice. Even with the GFCF diet, my girls still refused to eat the gluten-free bread so easily available in supermarkets when we were in Sydney recently. In my opinion, those breads were yummy! And the GFCF food choices available were plentiful, not just in supermarkets, but even in small cafes and food courts, as more and more Australians are lactose intolerant or have celiac disease. But even then, the girls preferred to feed the ducks, swans, geese and birds in the park with the gluten-free bread.

Many biomed parents face the difficulty of giving their children the many supplements, most of them tastes awful. Until the day my girls can swallow capsules, we’ll still find tricky ways to smuggle them in.  The TACA website had lots of suggestions on how to give supplements to fussy eaters like mine. I’ve smuggled supplements into spoonfuls of food eg. rice, sandwiches, peanut butter, GFCF ice cream. Most commonly, I add them to rice milk, though it took some getting used to. I even feed them rice milk filled with supplements and feed them at midnight when they are sleeping so they are less aware of the strong taste. I even made agar-agar, but they don’t like the texture. Some supplements taste fruity so you can add to juice, fill it in a non-clear sippy cup and encourage him to drink bit by bit throughout the day. I buy fun cups and glasses, even curly straws to encourage them to drink. Our favorite was to have drinking competition, where mummy, daddy, sister, maid and Maya race to drink from our colorful cups and curly straws:-)

Yasmin eating rice with chopsticks

We went out for a Chinese lunch with our Australian family recently, Yasmin gamely ate 2 mouthfuls of plain rice with her chopsticks, though Maya refused to eat anything except a few GFCF biscuits we brought along as an emergency snack. But guess what? I was so incredibly proud of both the girls, for they both sat quietly in their seats, they didn’t scream, cry, fuss or fidget in the crowded noisy restaurant. They  chatted away to Grandpa and Grandma, they were well behaved and happy. And they only played with the iPad and iPhone in the last 20 minutes of the long 2.5 hour mealtime. A huge change from 1 year ago. We usually try to feed them a good meal at home before or after an outing so that we can make sure they eat enough as well as be able to get the supplements in too. It’s a bit harder to add supplements into the food when we’re eating out, also the girls don’t eat much at all so all the supplement would go to waste anyway. Though I usually fill a little pill box with a few capsules of certain supplements and label them, so I can easily add the supplements into the milk bottles when the girls ask for milk when going out.

Notice the broccoli… yes, she will eat it if distracted enough

I also have other unconventional methods which would be frowned upon by parenting experts. We have all met judgemental parents who give us oh so helpful advice on how to encourage healthy eating in our kids, on how to teach them to feed themselves. I have not been successful in getting the kids to feed themselves a complete meal just yet, the best we could do is 3 spoonfuls then they run away from the table. I also find it helpful when we feed them in front of the tv or when playing a game on the iPhone. I am always offered unsolicited advice on how to encourage our kids to eat vegetables, fruits and salads. Yes, there are little kids who eat salads!! Even sushi rolls and other disgustingly healthy wholesome foods, how do these parents do it?

Note the girl next to Maya eating carrots and celery sticks

One mum I met at a kids birthday party has a 5 year old healthy neuro-typical daughter who refuses to eat birthday cake, instead she was happily tucking in to the carrot and celery sticks, strawberries and rock melon!the mum has obviously done something right, but I did not want to sit and chat with her. Especially when my girls refused the fruit platter and sausage rolls, yet were begging for a 3rd helping of the birthday cake. Respect to those mothers, but this mama is sticking to spoon feeding her kids chicken rice in front of the tv. Even though my girls didn’t eat fruit and crave birthday cake, I was more proud of them especially Maya. Considering that exactly 13 months ago, she couldn’t even be able to attend a birthday party, much less make friends with the other kids, join in the games nor enjoy the puppet show. I’d rather have the Maya I have today over a girl who would eat fruits and vegetables but not able to enjoy a birthday party.

 I have melted dairy free chocolate and mix with crunchy GFCF breakfast cereal and mix with supplements then fill into tiny paper cups and chill in the fridge so they look like chocolate.

You can mix into milkshakes/smoothies- mix rice milk, fresh banana and maybe strawberries and blitz it in the blender. If u have a good blender, u can even add ice cubes in, they are incredibly simple to make and YUMMY! I have made cocoa with real cocoa (not Milo or Ovaltine please!) rice milk and a bit of sugar, xylitol, organic honey, maple syrup or your choice of sweeteners. Then mix a few supplements in, though we call them Milo at home:-) Alternatively, there are chocolate flavored soy milk, even vanilla and chocolate rice milk as an occasional treat. Though soy is ideally eliminated from the ASD child diet, personally I do give them soy based treats occasionally. When my priority is to ensure they take a particular medication eg. a course of antibiotics, or additional minerals during chelation rounds, then the soy-free diet is temporarily lifted.

A sure fire way to make sure my girls finish their supp
lements is to mix it into GFCF ice cream. Singapore has different brands and flavors of GFCF soy as well as rice ice creams, in KL you can buy soy vanilla ice cream from the Country Farms Organic shop in Bangsar Village 1, only costs RM10 per 1/2 litre tub if I recall. When we were in Sydney, we found so many brands of GFCF ice creams. Hopefully through growing demand, our supermarkets will start stocking them in Malaysia. I would mix a small portion of ice cream with one or two supplements, then place into small pretty bowls and chill them for 5-10 minutes back into the freezer as by this time the ice cream would have become a bit runny. When adding supplements that are grainy into ice cream, I usually top the ice cream with some colorful sprinkles, the kind you use for baking. I usually get the girls to help with the sprinkling. Then the girls think that the grittiness or crunchy bits are sprinkles:-)I save ice creams only for certain very important supplements, not for daily use otherwise the girls get too much sugar and additives. Worse, they’ll start expecting it daily and it’s no longer a special treat.

My girls loves juice in small popper boxes, so I would usually empty out a small box of her favorite juice, then mix a small amount of juice with water and whichever supplement, mix it well, then syringe it back into the box. Usually I fill it up only 1/4 full, to make sure she finishes it. That way, she’ll ask for more juice. I save the leftover juice for another time and supplement, so the 2nd round I’ll dilute the juice again and add a different supplement in. Syringing it back into the box sounds like a long slow process, but we have done it with great success and have become quite an expert at it, it only takes 5 minutes. Using a syringe with a pointy bit works quite well when adding the juice into the tiny straw hole. You can even try it with small Milo popper box and adding your own homemade cocoa or GFCF chocolate milk, with supplements too.

Advice to parents new to Biomed- this mostly applies to members of the Picky Eaters Club:-)

Starting the GFCF diet- change only 1 thing at a time, you already know how to mix a tiny amount of rice milk with the formula and gradually increasing the ratio. Next step is to choose one other option. For example, if your child LOVES biscuits and cookies, then change that one first with a similar GFCF option. if he’s a bread lover, then change the bread. if she’s a roti canai addict, then try to make your own homemade GFCF roti canai. In the meantime, cut out the MSG, preservatives, additives, food colorings, flavor enhancers and artificial sweeteners. Doing this alone improves your child’s diet and health IMMENSELY.

Giving supplements- introduce only 1-3 supplements a week, forget about the 12 other supplements first. Otherwise the task would seem monumental and you’d be completely overwhelmed. I recommend to start with a quarter of the dosage, firstly to get the kids adjusted to the taste gradually rather than bombard them with the full strong taste. Secondly to determine any bad side effects.

Get your ABA and special education team to help- start the compliance program for taking supplements or medicine by syringe or by spoon now! If your kids are slightly older or more compliant, then get your team to teach your child to swallow capsules now. I just wished I had started sooner, who knows, it could be easier than you expected. You may not even have to resort to smuggling in the supplements, it is possible you could end up with a child who will happily swallow capsules, have faith!

Here’s a few ideas on how my girls would take some of their basic supplements-

Calcium- add to rice milk in the bottle or sippy cup. Kirkman’s Calcium powder tastes very mild, virtually undetectable in rice milk. My girls hate Kirkman’s Cal/Mag Liquid.

Magnesium- Kirkman’s Powder Magnesium Glycinate Biomax dissolves well into any liquid, if added to water it just tastes like sugar water. Contains stevia, but my girls have no issues with it. Just about any brand of Magnesium Glycinate we tried in capsules when opened are gritty and tastes HORRIBLE!

Zinc- both my kids cannot detect zinc capsules when opened and added to rice milk. Zinc picolinate tastes slightly better than normal zinc. But lately, Maya’s taste buds can detect it, so we changed to Kirkman’s Liquid Zinc berry pomegranate flavor. Can be added to juice and tastes fruity.

Fish oil- I have tried many brands, initially when both girls were milk addicts, after I have successfully converted them to rice milk, they can tolerate half teaspoon of fish oil in the milk. As long as the fish oil is added into the milk at the last minute and they must drink it immediately, otherwise the taste turns bad. For the past one year, both girls prefer Prothera Eicosamax. However, experiment with different brands, many comes in lemon, orange and strawberry flavors.

B6, P5P,B Complex and Super Nu Thera- no matter what I do, my girls hated the taste of B Complex and SNT. All of these turns milk yellow. However, B6 and P5P are slightly more tolerable taste wise. For a while, we could add tiny amounts to spoonfuls of strongly flavored foods eg spaghetti bolognese. But now, I find mixing B6 or P5P with TMG in water makes it taste like plain water! But this is only possible once we were ready to introduce TMG. Before that, I would give it in rice milk mixed with magnesium powder, provided the room was dark so the girls can’t see the colour of the yellow milk.

Probiotics- can be added to rice milk, or mixed into food, mild taste. Again, Probiotics are live cultures, so make sure the milk or food aren’t too warm. Culturelle too tastes mild and ok in milk.

Sacchromyces Bouardii- Kirkman’s S.Boulardii capsules when opened smells yeasty, makes milk slightly cream colour and slightly grainy. My girls are fine when added to rice milk. Some kids can’t stand the taste. Klaire Labs’ S.Boulardii capsule when opened are white, fine textured, dissolves well in milk and doesn’t have any strong smell or taste. This is a crowd favorite.

Medicated antifungals/ antibiotics/ antiviral- Diflucan capsules when opened and Augmentin suspension tastes fine in rice milk. For much stronger tasting medications, I would mix into GFCF ice cream.

Vitamin C- usually in tablet or capsule forms, my girls can usually tolerate it in juice, though with Maya, we usually have to keep encouraging her to drink small sips all day long.

As part of the Picky Eaters Kids Club, I have cried over spilt milk, spat out food and wasted expensive supplements. I’ve had to wipe down tables, chairs, floors, walls, furniture and even my beloved iPad when the girls suddenly spat out something where they find the taste offensive. Note to self, never ever feed them yucky supplements when playing with the iPad!
One amazing mum I know mix huge amounts of supplements into a spoonful of coconut oil several times a day, mix it to a paste and feed it to her child by force. Not only is she an amazing and determined mum, she is also a brave woman, for her child is big, strong and is known to be a biter! I nearly choked when I saw her mangled finger which was so badly bitten that she nearly lost her finger. By hook or by crook, this resourceful mother finds creative ways to stick to the strict diet and complex protocol, even when on holiday in a remote 3rd world country whilst on a house boat in the middle of a river in freezing 4 degree Celsius weather! RR, I’m proud to be your friend, you inspire and lead by example every single day.

We all have many different methods that work for our children, you too will find what works best for your child. With lots of patience, imagination and a willingness to experiment, you can find the best ways to feed the supplements to your child.

Happy New Year everyone, may 2011 be better and brighter to us all. Just maybe, by New
Years Eve next year, we’ll no longer be members of the Picky Eaters Club. Say no more to smuggling supplements by 2012, who’s with me?

>Joy Of Food….

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We desperately want to address Maya’s feeding issues and low (nonexistent) weight gain. Maya is in the extreme lowest percentile in weight for her age. Her height though on the low side, however is not a worry for us as she continues to grow in height. Maya is 5y1m, Yasmin is 3y8m. Both are the same weight, that’s just not right is it? Neither girls put on weight for about 8 months each, at different times. Recently, they put on 1kg each, after 6 months of absolutely no weight gain. And the 1kg gain took another 6 months as they would lose the weight again and again after each bout of illness. I don’t even dare look at the weight and growth charts anymore, Maya has always been on the lowest percentile in weight ever since she was 6 months old. Though you wouldn’t have known it, Maya weighed 3.5kg when she was born, a very good weight indeed. Yasmin was a whopping 3.75kg at birth. But now both girls hover between 13.5-14kg for the past 6 months.

There are days when Maya absolutely refuses to eat, we are lucky to get her to eat 3 tablespoons of food the entire day. On rare occasions, Maya has a good appetite and though she still would not spoon the food herself, at least she doesn’t fight us when we feed her. Generally, mealtimes are incredibly stressful and frustrating. The photo above is one of those rare times where the girls are happy to not only eat, but also feed themselves. Though that’s mainly because their beloved cousin Abang Imron is there to eat with them. We found that having a friend or cousin to dine with helps to encourage them to eat along. Though during those occasions we usually run out of food, as I am so used to cooking small portions for the girls’ small appetites, other people’s kids usually eat a lot more. But I always happy to have the girls’ little friends over, we love having them come over to play and eat with the girls.

I am thankful everyday that we are one of the few lucky ones in the Autism world to have recovered our daughter. The ABA therapy, GFCF diet and tons of supplements have brought us to this point where Maya is in a mainstream school, with lots of friends and activities and no longer requiring additional support or therapies. To most people, they see a typical 5 year old girl and our life is a vast difference compared to even a year ago. However, her feeding issue is still something we struggle with everyday. I won’t even go into the GI disorders, food intolerance, metabolic and mitochondrial issues that each girl presents. We desperately want our girls to be healthy, but how can they be healthy if they can’t eat?

Apart from continually trying to address their myriad of health issues, we’ve tried the method of “let her starve, if she’s hungry enough she will eat”, that failed spectacularly. We try to do family mealtimes, we tried sitting in front of the tv or lots of toys or arts and crafts projects in the hopes that they are distracted enough and will sit long enough that we can spoon some food into them. This has worked the best for us. We often do the chasing around the house with a spoon, that worked for a while though it would take us 1 hour to feed her. By the way, Yasmin is the same. We too struggle with feeding her, though her weight is acceptable and she’s not skinny like Maya. However, obviously her metabolism is different to her sister. Yasmin was an extremely good eater ever since we weaned her onto solids at 6 months. The difference between her and Maya was amazing, Maya who has always hated to eat since the beginning. However, Yasmin lost her appetite and refused to eat after her bout with Rotavirus infection. She also started to present many Autistic features and had many behavioural and developmental issues. But that’s another story. The infection impacted her gastrointestinal system is myriad ways. Till now, Yasmin is a poor eater though marginally better than Maya at times.

At school, Maya would eat a bit though a couple of times she has gotten agitated and even got a bit teary when the teachers insisted she finishes her food. When I questioned Maya, she said that she didn’t want to eat the big plate of food. I asked the teacher about it, they said that she was given the same amount of food as all her other classmates. They insist in a very kind manner that the kids finish their meals, though majority of the kids don’t need to be reminded and many request for 2nd helpings. The teacher and I worked out that Maya should be given a much smaller portion so as not to overwhelm her. And though the teachers should gently encourage her to eat, it shouldn’t get to the point where Maya would get over anxious and stressed out.

Remember, this is a girl who is well-behaved, compliant, attentive and friendly at school, a student who adores her teachers, has lots of friends, joins in every activity and has lots of fun in school. It is very clear to us that eating is a huge issue for Maya, even bigger than we initially thought. Though kudos to Maya, she sits at the table with her classmates every day, tucks her napkin in her collar, feeds herself albeit only a few bites and stays seated until everyone is done. She’ll happily tell me what she had for lunch, how much or how little she ate, which friend ate a lot, who liked to eat what etc. Most days, the teachers manage to encourage her to eat, though usually she only eats a very small portion. The only thing she adamantly refuses to eat in school is porridge. Also known as congee, a staple in most Malaysian kids diet. It’s Porridge Day once a week, so the school cook will kindly cook rice instead specially for her.  

Both girls are extremely poor eaters, I cannot emphasize enough how bad their feeding issue is. Most Autism kids I know are big eaters.Though I know a few kids with really severe feeding issues, much worse than Maya’s; it still doesn’t take away the monumental struggle we face every day feeding the girls.  And we struggle with this 3 times a day, every single day for the past 4.5 years…… They are extremely picky eaters, Maya will give a tentative lick of every food before hand. They are so picky that when at a birthday party, the girls were monumentally dismayed that the gorgeous birthday cake turned out to be a jelly cake. Made of agar-agar, in Malaysia is it common to buy these beautifully decorated cakes made of the firm jelly. And the kind mother of the birthday girl, quickly offered a 2nd cake she had in the fridge. We insisted she didn’t go to the trouble, as it was a brand new unopened cake presented as a special gift from a friend to them. I felt sorry for the mum because the girls spat the cake out immediately once they realised it was a carrot cake. We apologised profusely, but they were very kind friends and were extremely gracious about it.

Their appetite has improved quite a bit ever since we worked on some of their gastrointestinal issues. But even then, it is still a struggle. This is a long hard road till their gut is healed. Though we now live in the privileged Land of the Recovered, we do get reminded that we are recent arrivals and that we have to work hard to ensure that our Visa isn’t revoked. By maintaining the diet and supplements, we enjoy a lovely life with Maya. Maya no longer has Autism, for the moment I am certain she will not regress. However, we have been advised that puberty will bring an onslaught of other issues, however we will deal with it when the time comes,

We no longer enforce the GFCF diet as strictly as we used to do. After 2.5 years on a strict diet, we chose to loosen the reins now. At home, we still maintain the diet. However when we go out, the girls are allowed to eat gluten and casein, provided they
get a healthy dose of DPP-IV digestive enzymes. We usually take the girls out to eat at most twice a week. The girls would happily eat cakes, cookies, chocolate ice cream or their ultimate current favourite, croissants all day long if given a choice. Maybe, just maybe they’ll have a sandwich. But they are not interested in any other food at all. At home, we still struggle to feed them. I can’t count the many times we’ve had plates of food kicked out of our hands and pushed off the table, food scattered all over us, the furniture and the floor. Though now most times the girls have learnt to politely refuse the food rather than kicking at it. Progress comes in small steps indeed. By sheer hard work, tons of reinforcers and immense patience, between the nanny and I we still manage to feed them rice, many varieties of vegetables, chicken, fish and beef and a very limited range of other GFCF meals that the girls would tolerate.

But when we go out, the girls refuse to eat a proper meal. Even McDonalds’ cheeseburgers and fries or even pizza are pushed away! These are foods that most kids adore. How’s that for feeding disorder? We cook healthy delicious meals everyday, often we even cook 2 different meals as both girls have very distinct preferences on what they will eat. The only consensus is the Malaysian staple Chicken Rice, this is the only food that both girls will willingly eat, provided they feel like eating of course. And the only healthy food that Maya would willingly eat, even demand is avocados. She eats them straight or mashed with minced garlic and lemon juice ala guacamole. Avocados are an imported luxury food, it’s expensive and can be hard to find in Kuala Lumpur, but we are happy for the added expense of this nutrient-dense fruit in Maya’s diet. This was all due to Paul, how he got her to eat and like avocados still amazes me.

The girls very rarely want to eat proper food, though they can eat gluten loaded snacks like a champion anytime of the day. They are just not good eaters. It hurts Paul and I to the core when we see other kids tucking into their meals with gusto, even asking for 2nd and 3rd helpings. We marvel at those little kids’ voracious appetite, they eat everything and at times the parents can’t keep up with their demands for food. The many times we hear a parent say “My kid just won’t stop eating! He eats all the time!” And Paul and I always bite our tongue, though in our hearts, we are screaming “I wish our girls would eat!!”

When we go out to eat as a family, we usually eat in Asian restaurants or food courts. Someplace we can always order a rice dish or a chicken rice. If sufficiently motivated, we do get them to eat a small bowl each. The maximum we could get the girls to eat was half a chicken rice plate. Though usually a quarter is the norm. But eating in strange, new or interesting places is hard for the girls, they are too excited or too anxious to sit passively and eat or be fed. Though now, they are extremely well behaved when going out, getting them to eat in public is an immense challenge. However, this is a luxury for us, for the past 3 years we very rarely took the girls to eat out, or even go out in crowded places. It would have been too much of a nightmare. Most of the time, Paul would wolf down his food, while the nanny and I desperately try to keep the girls under control, then it was my turn to gobble up my food while Paul took over. Most of the time, I only got to eat half my food before we had to make a quick exit. How I still remained fat is still a mystery. And 99% of the time, the girls could never hang on long enough for the nanny to eat. We usually had to get take-away for her. Our long suffering, ever amazing nanny has learnt to eat as and when she can, because most days, neither she nor I get to eat lunch until 4pm. We always joke about some day we’ll buy her a lobster dinner…..  

When we go to people’s houses or private events, the girls refuse to eat. They may make a show of having a plate of rice and a piece of chicken in front of them, but it would remain untouched. At times, the girls would allow me to put plain white rice only, refusing to even have ANY thing else on the plate. But yet again, the rice would just be swished around the plate, not a single bite eaten. And if the host served Briyani rice, or any rice that is not white, it will be rejected outright. They won’t even go near roasts, pies, pastas, noodles, soups, casseroles and most other foods, Asian or Western. Most people when seeing the girls’ plate are usually horrified. Remarks like “Nasi putih saja??” i.e. “White rice only?” are common. I get looks of disbelief and derision, we can just hear them thinking no wonder the kids don’t eat because the mother doesn’t feed them anything etc. Most of the time, I just shrug, too tired to explain their feeding issues to people who don’t have a clue that there exist children who does not like to eat.

I could make a big show of heaping their plates with lots of protein and vegetables, just to show what a good mum I am.  Though I know all that precious food would just go to waste. In Asian culture, food is sacred and to waste food is sacrilege. I can even make a big fuss of feeding them, even though other kids their age are happily feeding themselves with gusto, not needing their parents to spoon-feed them.  I learn from experience to just let it be. To add a piece of vegetable on Yasmin’s plate in public would usually result in screaming tantrums. To insist that Maya have a spoonful of the delicious food that the host has cooked, “Just one bite darling, just taste a little bit, it’s really yummy, see your friends are eating it etc”, hasn’t helped. And it only gets worse, because people though well-meaning, starts to get in on the act, thinking that they can reason with a previously Autistic 5 year old. Though Maya has lost all her Autistic features, with her long history of chronic GI disorder, oral sensory issues, feeding disorder and anxiety with strangers amongst other things……Guys, you’re just making it worse. Just BACK OFF. You do not want to witness how shockingly violent and long drawn out reaction this can cause. It will be distressing to my kids, you and all your guests. I certainly do not want you to see this side of our life.

I have never ever expected for our hosts to provide a GFCF option for our kids, though many are kind enough to offer. And some are kind enough to make sure no forbidden desserts are served in case of temptation. That is incredibly thoughtful of you, but we would not hold your responsible for our dietary choices. We KNOW the girls can spot a cake or a cookie a mile away. We know that every time we step out of our home, there will be temptation everywhere. Though I do know some parents when invited to dinner at someone’s home, then act with indignation when there is no GFCF option for their child and demands that the host provide one now. Autism Biomed kids are either on the GFCF diet, some are also on a diet free from soy, egg, corn, sugar, additives, preservatives, MSG, artificial sweeteners and colouring. A few are on the Specific Carbohydrate Diet or the Low-Salicylates Diet. Duh, did you inform the hostess before hand of your child’s dietary requirements? Most hosts are gracious enough to oblige, though many don’t understand what the GFCF diet is and infractions usually occur. I certainly don’t expect my friends to know off-hand my kids’ diet du jour. How about be grateful people still invite you and your Autistic child to the party, so act like a mum and pack a meal from home. You cannot expect others to be responsible for YOUR child’s dietary needs, that’s your job.

We ALWAYS pack our own snacks. We usually feed them before we go out anyway. At times, I even pack a full meal complete with little bowls and cutlery just in case we could coax the girls to eat when we’re out. We are immensely grateful to be invited, especially by close friends and family who have seen first hand just how challenging our kids are. Most people never inv
ited us over again or even come over to our place after witnessing an ‘episode’. Though most of those episodes though shocking to those who do not live with Autism, were pretty mild in comparison.

When the girls are sick with the cold, flu or fever, which is often, their appetite really takes a dive. This is an especially hard time for us not just dealing with the illness, but trying to get them to eat. When we feed them at home, we also smuggle in supplements. We mix a bit of supplements into every mouthful. So when they are sick and lose their appetite, it usually is a precursor to a few days of non-compliance, tantrums and anxiety at home. When Maya misses a few days of supplements, some old behaviors will come back depending on which supplements she misses. Recently she was moody, refuses to wear clothes and grinds her teeth at night because she missed several days worth of 5HTP, TMG and calcium. Though Maya continues to behave well and act typical in school and when going out, at home she would fall apart. Most people don’t realize the heroic and almost violent effort it took Paul, me and the nanny to get Maya dressed and out the door every single day this week.

My kitchen is always fully stocked with organic vegetables and many varieties of fruits. I’m a creative cook, I constantly try many recipes and I make sure that there are always at least 2 meal choices on any given day. I even have back-up meals that I’ve cooked previously and keep in the freezer, ready to be defrosted in case of emergencies. Yet what do the girls do? They keep looking in the fridge and all the cabinets for “special snacks”. They beg, yes BEG for real bread, for cookies, for cakes and ice cream. It’s heartbreaking to see Maya moaning that she’s hungry, yet she would not eat the meals we offer her. She would rather starve herself and hold out for the gluten and chocolates that she craves. Visions of a a future anorexic Maya holds fear in my heart.

We do get the well-meaning lecture on how we should expand their repertoire of foods, that if they were offered more choices, more yummy cooking than mine, take them to a fruit shop and let them choose all the fruits they want and they will then want to eat the fruits, offers to cook their delicious vegetable soup that  they swear other picky kids absolutely loved etc. I’ve heard them all. And they all worked diddly squat. We have always agonized over the girls’ feeding issue, but the worry has grown in the past few months. Ironically it grew the more often we participated in activities that normal families do ie. go to parties, get invited out to weddings, kenduri, lunch, tea and dinner. Things that we couldn’t do in the past because of Autism. By being able to take the girls out often (something we are immensely grateful for) it has amplified their feeding issues. Having them sit side by side with another child who has a healthy appetite every single time we go out has magnified the severity of their feeding disorder. How ironic that the social life we dreamt of for so long would also bring a whole new heightened sense of worries.

Even in Autism land, majority of the kids I know are good eaters. They’ll eat anything and lots of it. There is even jealousy amongst Autism families, I for one am guilty of the envy I feel when I hear a friend’s Autistic child loves to eat. But in the whole scheme of things, I’ll gladly take normal, typical, recovered-from-Autism life with feeding issues compared to the isolated world of Autism, where Maya’s feeding issues were minuscule compared to the other debilitating features of Autism. In May, Dr James Partington, the renowed expert in ABA and Verbal Behavior Approach did an amazing presentation in Hong Kong and Singapore. I attended both conferences. He mentioned using food reinforcers during therapy, citing that this works very well because “What kid doesn’t like food?” Obviously he has never met my kids.

So yes, next time you see us in public and my girls either gorge on cakes or they eat nothing at all, please know that it hurts us to see our girls eating nothing yet your child eating healthy foods, even vegetables and fruits. We definitely don’t hate your guts for it, congratulations on a job well done. We are envious and a little be sad. Please understand that some children with chronic gastrointestinal disease and metabolic issues have severe feeding disorders. Be assured that we do feed them healthy food at home, they have been known to eat broccoli and spinach too.  But for now, eating will remain a private occasion for the girls. I don’t know how long it will take us to heal our children’s bodies, but we are doing all we can. We hope that one day, Maya will discover the joys of food and have a healthy attitude towards eating. So if you happen to see a harassed mum in the Pavillion food court desperately trying to shovel chicken rice into her 2 little girls, that’s probably me.