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……
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?
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?
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…….