>Journey Through A Vast Spectrum….

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Maya & Yasmin after Ballet Class

Throughout my journey with recovering Maya and Yasmin, I got to know many families and children affected by Autism. I may not have had the opportunity to give each and every child with Autism I know a hug, but I have had the privilege of listening to their stories. An Autism diagnosis covers such a vast spectrum of behaviors and features, just as each child is different, so are their families. Each child with Autism comes with a different set of circumstances on how they arrived at this journey. Each parent comes and faces the challenges that Autism brings in different ways.

Through support groups, online forums and the friendships we forge through our time in Autism, we all share our recovery journey, describe our child’s symptoms, troubleshoot each other’s therapy or medical issues, seek advice on a test report that has arrived, help getting supplements for each other, share tips and advice, compare prices, give feedback on new treatments and many more. Our children’s diagnosis ranges from Autism, whether mild, moderate or severe, Asperger’s, ADHD, ADD, PDD-NOS, GDD. Other diagnoses were a little vague eg. with some developmental delays, some behavioural issues …..you get the idea. For some, their child are ‘unlabelled’, for better or for worse, because they don’t fall under any of the current diagnostic criteria. Most of our kids here are lumped together under psychiatric, behavioural and developmental disorders, to be left to the tender mercies of the world of psychopathic medication, psychiatric institutions and behavioural therapy.

But behind the curtains so to speak, we also hear and share stories of guilt and regret. There’s a lot of self-blame going around, especially amongst parents whose children were recently diagnosed. Self-blame is an unfortunate past-time for some parents. Many parents, mothers especially harbour feelings of guilt and regret over their child’s Autism.  A friend shared her regret recently, taking up too much of the blame on her shoulders. Shoulders that were already shuddering under the massive weight of responsibility that comes hand in hand with Autism. She felt that her actions were part of the blame on why her son had Autism. We hear these stories all the time, however the more Autism Warrior Parents I speak to, the more I learn that Autism is such a vast spectrum, there is no one definitive causative factor. Each and every child I hold in my heart came about to Autism through different means, many with co-morbidity. Some were early onset ie. the symptoms were showing from birth, some were regressive ie. Children with normal development but regressed or plateaud after 1 years old. Some regressed rapidly, some regressed gradually. In a small handful of families, there is Autism or a related disorder in the family tree. But majority of the children I know do not.

Playing tea party

We hear regret over what happened during pregnancy such as getting dental amalgam work, eating lots of fish, working in a super stressful job, hypertension, feeling depressed, getting Rhogam shots, induced labor and other complications during pregnancy. Some were unavoidable such as having to do emergency surgery or contracting a virus during pregnancy.

There is a fair share of normal and c-section births, some mothers had complications or needed forceps during the birth, many had uneventful births. Many newborns were healthy, but some were in ICU, a few had medical complications, some required surgery at such a young age. Many children had high APGAR scores, some were very low.

Some parents regretted not breastfeeding, a few mothers breastfed for a few months then switching to formula, some breastfed their babies up till 2 years old, some dedicated mothers who had to go back to work would express milk in the office even. I know many mothers who went back to work, a few felt that it was one of the reasons why their children got Autism. Some mothers contemplated quitting their job to take care of their child full time after receiving the Autism diagnosis. Some did, but some continued on as their income was much needed. There are many households where both parents worked, some parents even have second jobs to afford the treatments. Some households have many nannies and maids to help, others had part-time babysitters but many do not have extra help at all. A few families lived with supportive grandparents. And common amongst Asian families, many live in large households with extended family members. Quite a few biomed mums felt isolated in the midst of their family who are opposed to her treatment choices. And some are lucky enough to have full support.

First in line for birthday cake at cousin’s party

A few felt that because they had other children, their child was somewhat neglected thus causing Autism. I know children with Autism who were either the eldest child, the middle child or youngest child. There are families with several children, for some all are somewhere on the spectrum, I know families where the other children were perfectly healthy but with one child affected by Autism.  I know of a few twins, for some only one of the twins have autism, in other families, both twins had Autism but their symptoms were on opposite ends of the spectrum. Some families have to make the difficult choice of choosing which twin to treat as they couldn’t afford to treat both children.

Many children were generally healthy, a large number like my girls were considered healthy except for frequent sore throats, ear infections, constipation, rashes, colic, frequent colds and flu, constantly on antibiotics and a few other medical issues which are generally accepted as normal by most paediatricians. Some children has asthma and allergies, and a small number have other more serious underlying medical issues.

There were children who were pre-verbal, some had some language skills. Some children were hyper-active, some were aggressive, a few were screamers, overly-friendly even with strangers, and some were self-abusive. Some children were very passive, quiet, withdrawn, some children could barely walk or sit upright for long. I know children who started therapy or treatment with little or no verbal communications, but have progressed to losing many of their stims, speaking in 5 word sentences, back to back conversation and spontaneous unprompted speech. I also know children who even with years of therapy and treatment has made very little progress in comparison to t
he amount of time, money and effort they took.

Just as our children manifest such a huge spectrum of behaviors and progress, so do the parents. There were older mums and younger mums. Some were domestic goddesses who cooked organic GFCF or SCD foods, some do rotational diets. A few mothers aren’t familiar with their own kitchens, having chefs, maids or family members who are in charge of the cooking. Yet each and every parent I know succeeded in implementing the strict diets their children require.

I know many supportive amazing fathers. Many are hands-on therapy and Biomed dads, but too many are unsung and unseen heroes who work tirelessly to ensure they could financially provide for the treatments. One common factor in all these children dear in my hearts is that they are surrounded by love and parents who would go to the ends of earth to help their kids. And a special shout-out goes to aunts, uncles, grandparents, in-laws and other extended family members who willingly roll up their sleeves and work together towards recovering their beloved nephew, niece, grandchild, cousin etc.

Maya at Jazz Class

I have had the privilege of meeting many families affected by Autism of many ethnicities and nationalities; Malay, Chinese, Indian, Thai, Indonesian, Philipino, Caucasian, Central-American, African American, Afro-Caribbean, Eastern-European, Arabs and Middle Eastern. Some were of mixed ethnicities. Some were the traditional 2 parents and kids families, some were single-parents, some lived in huge communal family homes with extended family members, some were locals who receive help from family members, some were expatriates living very far away from their support network. I know a few families where one or even both the parents were doctors, yet they still face the same challenges just like us other Autism parents.

Many parents have various opinions on their causative factor or what triggered Autism in their child. The list is too long to write down, suffice to say most were varied. Some families choose one treatment or therapy, some chose a mixture of modalities. A few have to try many different therapies and treatments before they found what was most effective for their child. Some are happy with their child’s progress, but many wish it was better and faster. Treating Autism is a long journey indeed, we do not know when we will reach the destination. We cannot predict where the destination will be. For many, the journey can be very lonely and isolated too.

I have had the privilege of knowing a few families affected by Autism all over the world. There are many children I hold very dear in my heart, many of their parents have become close friends. At times, the sadness hits me like a tsunami. This happened often in the early days of diagnosis, the sadness and loneliness are now few and far between. But it still hurts to see old photos and videos of Maya and Yasmin before they were affected. If I wanted to, my list of regret would be plenty. A lot of things that I can fester in and let the weight of guilt push me down. But I won’t.

Maya pre-Autism

Let go of the guilt and regret. Yes, the sadness does linger on for a long time. But don’t let your own grief disable you. Within that sadness, there are many moments of hope, joy and happiness. Perhaps one day scientific research may catch up and can isolate certain causative factors and able to identify who are at risk of Autism. There are books and articles online on how to prevent Autism.

This is one of my favourite photos of Maya before she regressed into Autism. Before the shining light and the depth of her soul in her eyes were dimmed, before she turned into a shadow of her true self. Before Autism took away so much of her joy and happiness. But now, I have a happy child full of life again. Maya is a daughter and sister again, happy, playing and joining in all the fun things that 5 year old girls do. For that I will be eternally grateful.

Please join the KL Biomed forum for Asian-based families. Get acquainted with other parents, professionals and support groups who believe that Autism is Treatable. Surround yourself with people who are supportive and positive. Establish a network of friends, manage your anxiety and stress levels (I know there’s many of you out there!), don’t be afraid to ask for help. Believe that every little thing you do counts. Not every child may get to full recovery, however you can improve the quality of their lives tremendously. So keep up the great job my friends, you inspire me with your strength, determination and resourcefulness. And remember that I hold your loved child true in my heart ……

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