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.