Category Archives: diagnosis

>Dumb Advice and More…..

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

10 Valuable Lessons For Autism Parents: A Journey Of Grace And Dignity

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I am a mother of 2 children who are now recovered from autism. In my journey of healing and recovering them, I learnt that anything is possible. As a mother and autism advocate, I share with you some valuable lessons I learnt in my journey.

When both my daughters were diagnosed with autism, in the midst of my grief, I had to pick myself up and figure out a way to help my children. What do I do, where do I go, how do I start? For families who have just received the autism diagnosis, believe in HOPE. Without hope, you have already lost the fight before you’ve even begun. Always believe that our children can improve and even recover.

autism

1. Attitude is everything

How you respond to something will determine your outcome. If you choose to walk down this path full of fear, anger, hate, scepticism, negativity, sorrow, or jealousy, expect to receive the same in return.

The first few months after my daughter received the autism diagnosis, I lived in a life ruled by fear. Fear of the future, fear of the unknown, fear of taking risks, fear of making the wrong decisions, fear of whether I can do what it takes to help my child. A life led by fear is not healthy. It also stops you from moving forward.  It was a lonely, scary journey.

I realised that this is not helping my child at all. The fear is still there, it will never go away I think. However, the difference is, I no longer let the fear stop me from doing what is best for my child.

You’ve probably heard of the law of attraction. The philosophy of ‘like attracts like’ is extremely powerful. If you have a lousy attitude, chances are, no one is clamouring to help you and your child. More often than not, you will meet resistance and hostility.

Reset your attitude, you will be surprised to how much more you will receive in return. There is an infinite amount of love, hope and positivity in the universe. You just have to reset your frequency to tune in to that positive abundance.

2. Fill your space with positivity

Surround yourself with positive, supportive and encouraging people. These are the ones who will stay with you along the way and cheer you on. Don’t waste your precious time and energy on negative people who will only hold you back and make you feel worthless. They will drag you down instead of helping you up.

To the ones who make you angry or say hurtful things, just smile and walk away. Don’t scream at others. Screaming doesn’t help the situation, it only makes things worse. If you have done wrong, apologise.

Fighting only zaps your energy. Don’t fight in front of your children, they can hear you and remember what you said. Autistic children are not deaf. Don’t forget to hug and kiss your child. Even if you think they’re not listening, always tell them how proud you are of them. Love them and kiss them everyday, this is better than any therapy or medication. Don’t forget to surround your child’s space with positivity too. They need it.

Always treat your therapists, service providers and medical professionals with respect. They are there to help your child. Always pay them on time. Consistently paying them late is a sign of disrespect and lack of character on your part. Being rude or mean to them is just cultivating negative emotions. Surely you don’t want your child to be treated or taught by people full of anger and resentment right?

Choose hope and positivity. Expect this to be a journey full of challenges and pitfalls. But also expect pleasant surprises and wonderful progress. Autism never stops, it never takes a day off, it never gives us a break. Our children live in autism 24 hours a day. Always treat our children with kindness and respect, we can only guess how it feels to live in their bodies.

Trust me, it’s easier and happier to travel this journey when you fill your inner space with positivity and surround yourself with the right people.

 

3. You are what you eat!

Clean up your child’s diet immediately and focus on healthy, nutrient-dense foods. My daughter responded positively to the GFCF diet. Within the first week of the diet, she spoke her first word!

I went gluten-free, casein-free, soy-free and egg-free. Omit all gluten (wheat, oats, rye, barley) and casein (cow and goat milk-based products, milk, yoghurt, cheese, butter) I stopped soy too because soy’s biochemical properties are very similar to casein, plus majority of autism kids test very high intolerance to soy. Most ASD kids also have very high intolerance, if not allergies, to eggs.

Incorporate nutrient dense foods in your family’s diet. Go organic and GMO-free if possible. Choose grass-fed, free-range, antibiotic-free meats. Very important to reduce or stop processed, packaged foods and drinks that contains preservatives, colorings, flavorings, artificial sweetener, caffeine. Stay away from sugar and high fructose corn syrup. These really affect our kids and behavior!

Do the diet 100%. Yes, there are other kids eating junk food and bread in front of your child. Your child WILL try to eat forbidden foods. Yes, other family members don’t want to follow the diet. Yes, grandparents will smuggle a bit of ice cream in. There will be transgressions, it happens. Start the diet again. Find a way to make it work. Eventually, the diet becomes 2nd nature.

4. Autism is medical

Many children with autism suffer from gastrointestinal issues, oxidative stress, nutritional deficiencies, immune dysregulation, inflammation, allergies, chronic infections, and disorders resulting from environmental toxins.

Treat the underlying medical illness, a healthy body means a healthy mind. If your child has chronic constipation, diarrhea, unable to eat, frequent infections and illness, do not make autism an excuse not to treat your child. Not everything in autism is behavioral, some are medical conditions that needs medical treatment. Every child deserves good health, autism or not. Everyone deserves good health and medical treatment during illness, whether they are young or old.

Make an appointment with a biomedical doctor. They will help you address the underlying medical issues that are common in our children. Click here for Biomed Doctors. There are other treatments that are highly beneficial for children with autism and ADHD, including homeopathy, osteopathy, cranial sacral therapy, essential oils, to name a few. Please consult with a medical doctor or a healthcare professional to manage your child’s treatment.

5. Finding the right therapy and school

There are many types of therapies that are beneficial for our kids. In my opinion, any therapy you choose should be intensive, consistent, preferably 1 on 1 therapy. For many children who are new to diagnosis, larger student to teacher ratio may not be suitable initially. It is important to invest in a good quality therapy or therapies that are consistent, frequent and conducted by trained professionals. Choose therapies that are targeted at addressing your child’s needs. The therapy should adapt to suit your child, not the other way round.

Remember, early intervention is key! I did 1:1 ABA therapy (Applied Behavior Analysis) for my daughter, and I can’t recommend it enough. When she was first diagnosed, I did home based ABA, 15 hours of therapy a week. By the time she was 3 years old, I changed to centre-based ABA, with 30 hours a week of therapy. That made a HUGE difference in her progress. There are pros for home-based as well as centre-based therapy. Ultimately, I chose centre-based therapy as there were many more benefits compared to home-based therapy for my daughter.

Doing home-based therapy was fine for a while, but after some time, I found many aspects of her development were not addressed enough if I kept her home all the time. Centre-based therapy helped with social-skills, generalisation, flexibility and also is a gentle transition to a mainstream school environment. Also, on the plus side, she had access to many more variety of toys, reinforcers and games at the school. And there were lots of therapists and other children there to play with.

I am the co-founder of Brightstars, it is a holistic school for children with autism, ADHD and learning challenges. I set up the school with my 2 good friends who are also mothers of children with autism. We have always dreamt of a school that had all the best therapies and programs that we felt were most beneficial to special-needs school. We dreamt of a school that focuses on quality rather than quantity. A school with a 1 to 1 student to therapist ratio. A school filled with the best, brightest and most compassionate therapists ever. A school that was sensory-friendly, quiet and calm. Most kids with autism find noisy and busy schools a sensory nightmare. So we put great thought in the design of the school. I wanted a school that was comfortable, friendly and fun. Most importantly, I wanted a school where each child can reach their fullest potential.

Brightstars incorporates a comprehensive curriculum with a 1 to 1 student to therapist ratio. Each child receives an individual education plan (IEP), ABA therapy, occupational therapy, sensory integration therapy, music therapy, Autism Movement Therapy, social skills playgroup, school readiness program, and more! To find out more about Brightstars – Life Skills For Exceptional Kids click here www.brightstars.my 

6. Get connected

Get connected, get educated, start surfing – join the KL Biomed FB Group to connect with other parents who are doing nutritional approach, biomedical treatments and various therapies.  Don’t forget to check out The Thinking Moms’ Revolution and connect with them on Facebook. Get acquainted with other parents, they will be your main source of support on this often long and lonely journey.

Remember, you are not alone.

7. Take care of yourself

Take care of your physical, mental and emotional health. Don’t be afraid to ask for help. Don’t forget to eat well, get enough sleep, exercise and eat healthy. By taking care of my health, I was more equipped to handle the stress and rigours of special-needs parenting. I could do more for my child when I myself was healthy.

Don’t forget to nourish your soul- go for a massage, go to a salon for a hair wash, go for a swim, go to the cinema, walk in the park, have an afternoon nap or  go for a coffee with a friend. Try to do something just for yourself once a week. Without you, you child will not improve.

I take supplements, eat healthy, try to exercise and I make personal time for myself regularly. I feel all the better to face the challenges that autism throws at me everyday. Not everyone will have the resources to afford this, not everyone is blessed with helpful family members or friends who can share the burden and give us the break we need. As far as autism parents go, I am extremely lucky indeed and I count my blessings. Manage your resources wisely, however little we may have.

It is hard to strive for recovery when the mum is in deep depression and under extreme stress, the goalpost seems further away when we feel bleak, dejected and pessimistic.

If you are married, take care of your relationship. You are not the only one grieving, your spouse is too. Along the way, you will lose your sense of humour. Try to regain that, you will need it. Have patience. Learn to forgive.

Don’t forget to pray. Only pray for good things. Worrying is praying for bad things. So, pray for good things. Set realistic goals. Give yourself small challenges. Don’t sweat the small stuff, look at the big picture. Celebrate the victories, small or big. Mourn the losses, but pick yourself up and keep going to the next level.

8. Focus on what you CAN do, not what you CAN’T do

I always tell parents to focus on what they can do. Don’t focus on the things that you cannot do. Focusing on the things that you don’t have, can’t do, can’t afford etc, is a waste of time and energy. Instead, put your energy into the positive actions that you can do TODAY.

 

9. Set realistic expectations

Be realistic in your expectations. There is no miracle cure, no magic pill, no one size fits all when it comes to autism. It takes hard work, perseverance and TIME for our kids to improve. Expecting a child with 3 years worth of speech delays, behavioural issues and sensory disorders to improve drastically within just 6 months of therapy and treatment is unrealistic. You cannot catch up with years of delays in just a few short months. Anyone who promises you miracles cures or instant results, be wary.

Think big, aim high. Don’t underestimate your special child, you might just be pleasantly surprised. Don’t let anybody hold you or your child back.

10. Forgive yourself

It is not your fault. Your child’s autism was not caused by bad parenting. Blaming yourself only brings you down. Ultimately, you need to move on. Don’t waste your time on guilt, it is counter-productive. It’s not helping your child.

Remember to go through this journey with grace and dignity. Our children are voiceless, it is up to us to speak up for them. Don’t forget why we do this, out of love for our children. A smile goes a long way, a thank you even longer. Don’t forget those who have helped you along the way, pay it forward in the hopes that you too can help the next new parent that comes your way.

~ Marissa aka Spectrum Mum

 

>Survivor, Not Victim

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A parent had recently asked me if I was scared, she had written to me with such stark honesty about her fears and desperation. She wrote of her life, her child and how twisted her world had become. I can still remember living in a twisted world and I’m sure I have scared off a lot of friends and alienated many people around me with the intensity of my pain. Though I got a lot of sage advice, I was deaf to it because of the roaring of the pain in my soul.

To most people, listening to an Autism Mum can be quite challenging. It is hard for most people to truly understand what life is like with a child with Autism, most think that it’s like the movie Rainman or what is commonly yet wrongly portrayed in TV as what Autism is. For a lot of us Autism Mums, we learn the hard way not to talk about it with most people, otherwise you end up alienating yourself and lose friends. How often can a friend or even family members listen to you about the stimming, the spinning, the lack of speech, the poop smearing, the obsession to lick every single thing or the bad nights that the mum has had? The ASD symptoms can be quite bewildering to non-ASD parents, most of them don’t understand why we obsess over the seemingly small things. So what’s the big deal about lining up toys, waking up singing in the middle of the night, climbing on the television, biting the teacher, spinning in circles, lack of cooperation or speech that is slow to come? What’s the big deal about a child’s constant drooling, lack of eye contact, repeatedly tapping on the walls or standing upside down? No one wants to hear about the insane screaming and tantrums that used to go on in my home (except maybe you guys who are reading this!) When I talk about the meltdowns and anxiety, the picky eating and the non-compliance, usually I get blank looks or condescending remarks on better parenting.  

My friend had poured out her soul into her email and wondered why I hadn’t replied to her. I finally wrote back and apologised, explaining that both my girls were ill and so was I, thus the late reply. I also wrote “You asked me before if you scared me; I have been in situations a lot scarier. I don’t scare easily.”

As a parent with a child with Autism, you would understand what those scary moments are. I have been scared when my daughter would bang her head so hard against the floor that I thought her skull would break. I remember the fear when I heard Maya laughing insanely in the dark at 3 o’clock in the morning. I have let fear stop me from getting treatment for my child. I have been afraid of being left alone with her because I was not able to control her. I was scared of taking her out in public because she would scream so loudly as if she was being tortured that everyone would stare. After what my family and I have been through, an emotional email from a distraught mum doesn’t scare me. I have seen fear in my childrens’ eyes; that’s when I knew that just because Mummy is scared, it doesn’t mean that Mummy doesn’t have the courage to keep fighting for her baby.

I am guilty of holding my child back, for fear of her failing. But if I never allow Maya to be challenged, how will she ever learn and grow? The future was full of unknown fears, because Autism has such a bleak prognosis, I didn’t know how I should plan our future. Leaving her in a room with a therapist was difficult, so was letting her go to school for the first time. 

Doing the first blood draw was so traumatizing for Maya and us that it actually stopped us from pursuing biomedical treatments further. I was scared that doing biomed would require us to do more blood tests, the memory of that first blood draw still brings shivers through Paul and I. It took 6 people to hold Maya down, drop after drop of blood was squeezed out of her arm. Vials and vials of precious blood, to the sound of Maya’s horrific screaming. I swore to never let her go through that again.

Ironically, that horrific blood draw was not even for Biomed, it was actually for mainstream medical screening tests. The worst thing was, all those tests came back negative or inconclusive. The doctor didn’t find anything “wrong”, there were no treatments to follow up with except some vague remarks about giving cod liver oil. All that trauma for nothing, it imbedded a deep mistrust in the medical profession in me for a long time. 

I kept making excuses and delaying to see a DAN doctor for several months. We’ll see the DAN doctor when…… her ABA program is well under way, when she gets over this cold, when she’s healthy, when she is more compliant, when she can listen to us and not meltdown when we travel with her etc. Then when both girls were hospitalized for Rotavirus, it suddenly hit me that if I were to wait to travel to see a Biomed doctor only when Maya was healthier or when she was more manageable, it will never happen. She was having colds, flu, fever, coughs and tummy aches constantly. She was still non-compliant, there were still epic tantrums and meltdowns whenever she wasn’t doing ABA. There were very few moments when it was convenient for us to take time off to travel to the doctor. There were always important ABA programs that we couldn’t take time off from, there will always be chores and meetings. There was never a perfect time to travel, there were always other commitments that took precedent. It was a lightbulb moment for me, I really understood then that my child was sick. She will not get healthier nor will her behaviour improve until I get her treated. I finally understood that taking care of her underlying medical health should be our foremost priority. 

I finally got up my courage to take that step and make an appointment with a real DAN doctor, someone who was listed in the ARI website. 6 months of wasted time, only doing ABA and not doing anything about her medical health. I finally realised that I was scared of the blood draw, that this fear was holding my daughter back from getting the medical treatment she needs. That fear held us back for so long, that when we finally met our first and then our 2nd Biomed doctor, I felt so foolish. Because the fear that I was so afraid of was unwarranted. There were no blood draws involved! Only a prick on the finger for a blood spot. 
Months later, we were required to do blood draws for certain tests as we were doing more and more complex treatments. However, we took it all in stride. Sure, it was difficult and painful to go through. But we realise that Maya got over it much quicker than we did, it was foolish of us to hang on to that fear when the pain has already worn off long ago. We just did another round of blood tests a few days ago. Maya cried, Paul went a little pale and I got choked up when I saw Maya’s blood spurting out of her vein. But we got over it. We know that in order to ensure that we do all these treatments as safely as possible, we do need to go through a blood test once in a while. A small amount of pain now, for a lifetime of happiness right?

This morning, I was sitting in the lobby of a dance school, waiting while Maya is having her ballet lesson. She has been pleading with us for months to go to ballet class, but I always held back because I felt that she was not ready for it. After some time, we finally took Maya in for a class. As always,
whenever we felt that we were pushing her over her limit or demanding too much from her, she always exceeded our expectations. Again and again, she has shown us how high she can soar. I am in awe of this beautiful daughter of mine, her heart is so big, her strength and courage puts me to shame. And yet, I still tend to hold her back for fear of failure. Whether it’s hers or mine, I’m not sure.
She did so amazingly well, in a class of a dozen little girls in identical pink tutus, you would not see her any differently from the other ballerinas. Except for her huge smile and graceful arabesques. She has had several classes and her enthusiasm and love for dancing is apparent. She pays attention and obeys everything the dance teacher says, points her toes and follows all the moves. She is dancing in a group with other tiny adorable ballerinas, stretching on the barre bars and standing at first position like a prima ballerina. I was surrounded by other mums who, though proud of their little girls, seem to take it for granted that their girls are fine. I’m so freaking proud of Maya that I had to stop grinning like a fool in the lobby, my heart is so full of pride for her I feel it would burst. They are chatting about family vacations and private schools, while I still can’t let go of the grip of Autism just yet. 

In the first few months after Maya’s diagnosis, the fears and the tendency to hold Maya back was turning me into an Autism Victim. When I discovered that about myself, I swore not to be a victim, that my daughter and my family will not be a victim to Autism. Instead, together we took the journey to be Autism Survivors. Sometimes we need to go through a war in order to survive. Though the war on Autism is over in our home, we still feel like we’re living in a war-torn zone. It will take time to rebuild this family, though we are well on our way. It will take even longer to recover financially, though our initial investment has multiplied ten-fold in other ways. We have kicked the enemy’s ass and regained our country. We are no longer Autism Victims, we are now Autism Survivors. 

>Making Up For Lost Time

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My 2nd daughter Yasmin turned 3 years old recently. As usual, we had a very small birthday party with a homemade GFCF cake. The girls had a lovely time, though Yasmin started crying when it was time to blow the candle. Luckily, her big brave sister blew out the candles for her.

For the past 1 year, our efforts have been to prevent the onset of Autism in Yasmin. Since her bout with Rotavirus a year ago, she has regressed and presented several Autistic features including physical and verbal stimming, tantrums, behavioral issues, repetitive motions, OCD traits and difficulty in transitioning. Thankfully, her language, speech and cognition has always been at age-appropriate level and has never regressed in any of these criteria.
We feel that we have been successful in preventing Autism, however we have not made any great strides in actually improving any of the issues. We are working with several doctors, however no one has been able to give us any significant or sustained progress. Health wise, our immediate concerns are her chronic diarrhea for the past 4 months, recurrent bacterial infections, clostridia, heavy metals and passive immune system. Our biggest behavioral challenges has been with her violent mood swings, temper tantrums, rages and defiance.
Yasmin is extremely bright, chatty and active. She is adorable and affectionate, she can be very loving and charming at times. But most of the time, we only saw her erratic mood swings and violent behavior. She would be cranky, whiny, crying inconsolably and throw epic tantrums. She would cry so loudly and for so long, that poor Maya would have to hold her hands to her ears to shut the noise out. She is uncontrollable when going out, she would fight us every step of the way in most day to day things such as feeding, dressing, bathing and sleep. Her non-compliance and tantrums is getting harder and harder to deal with. She hits, pushes and bites Maya even though unprovoked.
At times, I mourn for the loss of the beautiful sweet tempered child she was before. Previously, Yasmin was always smiling and happy, but in the past year, the smiles were harder to come by. Last year, there were a few months where we couldn’t find any photos of Yasmin smiling at all. It is difficult sometimes for me to feel the same level of connection with her that I do with Maya. At times, I feel disconnected from her. It is a horrible feeling for a mother to have, especially since previously we have been incredibly close.
Yasmin is an amazing girl and I love her deeply, but constantly dealing with her mega-tantrums and mood swings has stripped away a lot of the joy in being with her. These negative behaviors has overshadowed her true nature. In my heart, I know Yasmin is still the sweet, cheerful girl that was full of smiles and happiness. She brought sunshine and light into my life when we were in our darkest times dealing with Maya’s Autism. Yasmin was my bundle of fun, being with her made me feel like a `normal’ mother again, not just an Autism Mom. She was my respite into normalcy, the one I would run to whenever dealing with Maya was just too much to handle. Her joy and happiness was so tangible that she effected everyone near her. Since the day she was born till she was 2 years old, she was an oasis of calmness, contentment and joy in the midst of this family that was being torn apart by Autism. This is the Yasmin that I remember, the beautiful soul that I know is still there inside her.
The recognition I felt whenever she looked into my eyes, listening to her voice knowing that she was actually talking to ME, rather than verbal stimming was all new to me. I never realized all the joy that was denied to me as a mother to a child with Autism. Before Yasmin, all I knew of motherhood was tears and backbreaking effort. When Yasmin was old enough, I finally knew what it felt like to have a conversation with my child, rather than with a child with Autism who is lost in her own little world. The hugs and kisses Yasmin used to give and receive without pulling away from me, that was my cure for the empty space in my heart that Autism has stripped away from me.
I felt whole again as a mother. Yasmin accepted all the love I had that was previously rejected by Maya. Through no fault of her own, Maya was not capable of showing her affection nor did she welcome our hugs and kisses. We were merely the giver of milk and cookies. Whereas yasmin actually wanted to be with me, she enjoyed my company and would cry and miss me when I’m gone. Maya barely acknowledged my existence, even when I was away from her for a few days. Yasmin made up for all the lost hugs and kisses then. Though now we get it two fold from both our girls, for this we are blessed.
Yasmin’s regression was a huge loss to the whole family. Till today, I mourn for the loss of the happy little girl I remember, much deeper than when I was grieving for Maya. Somehow, the loss felt bigger. It doesn’t make sense to me either, but though I grieved for Maya when she was diagnosed with Autism, it was in a way a relief for us. Finally we had a label that explained why we struggled so much. As much as we hate the label and labelling children, it helped us to deal with Maya. With Yasmin, there is no diagnosis, no label. Just horrible behavior in a child who seems like a spoilt brat, though I know her behavior is related to the damage done by the Rotavirus and heavy metals. Many people ask why we do biomedical treatments on Yasmin, even though I try to explain, many still don’t understand. Until you have lived in our house for 1 day and had to deal with Yasmin, you will never understand. We know that once we are able to treat her gut and underlying medical issues, her true nature will emerge again.
I used to feel sorry for Yasmin, because she was constantly being rejected by Maya when Maya was deep in her Autism. She used to look up to her big sister and always wanted to play with her, but Maya was not able to be a real sister to Yasmin. Now that Maya is able to interact and play with her sister, I am saddened that Yasmin constantly hurts Maya physically. Sibling rivalry? I don’t think so. Perhaps this is payback for all the times we neglected her when all our effort was focused on recovering Maya?
We hope that in the future, both girls will have a strong sisterly bond and be each other’s greatest allies. Now that Maya is nearly recovered, I feel that she and I have made up for lost time. Maya and I have a bond that is as strong as with any mother and child. It is undeniable that we have Maya back, she is no longer lost. I hope to have the same connection again with Yasmin, I can’t wait to make up for all the times we have lost. I hope Maya and Yasmin will grow up to be sisters who are close and united, to be there for each other always.

>ATEC Score

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

ATEC

Feb 09

Jul 09

Dec 09

Speech / Language / Communication

15

n/a

 0

Sociability

22

n/a

3

Sensory /

Cognitive Awareness

22

n/a

 2

Health / Physical /

Behavior

41

n/a

20

Total

100

35

25

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