You may probably have read Welcome to Holland, a beautiful piece written by a parent with a child with Autism. Read it here. Yes, I expected Italy but I landed in Holland instead. But after living in Holland for many years and experienced all the joy AND sadness that is Holland, we look forward to an adventure in Italy again.
It is up to each parent to decide how they wish to treat their child’s Autism diagnosis. No one ever expected to have Autism in their lives, how we choose to treat it or not is a very personal decision. We can neither preach nor cast judgement on them. Every child with Autism is different, each family’s ability to deal with it varies. Even Autism parents are guilty of being judgmental of other Autism parents, in fact even more so. I too am guilty of being judgemental, though I remind myself to refrain from judging others. However, should someone come to you for help or advice, be generous with your spirit and encouragement, if not your time, money or effort.
Maya turned 5 years old a month ago. Her life is drastically different compared to even 1 year ago. Maya goes to a normal kindergarten, she enjoys school very much and has lots of friends. The teachers have never once remarked anything different about Maya compared to her classmates. Except that she is very eloquent, has great imagination and is a very poor eater. She gets invited to lots of birthday parties, where before we were never invited anywhere because of her Autism. She has lots of playmates, she even makes friends very quickly and easily when meeting new children at parties, the park or playground. Maya also goes to ballet class twice a week and her teacher even recommended she start preparing for formal examinations based on the Royal Academy of Ballet curriculum. Maya also goes to a Jazz dance class once a week which she greatly enjoys.
We go out for family outings often, last weekend we had tea at a fancy hotel with a live jazz band and singer. Maya loves music especially live music and she was mesmerized by the beautiful singer. The girls were perfectly behaved and we had a great time. This was something we could never imagine doing a year ago. Maya would be screaming and rolling on the floor because the acoustics and visual stimulation would be too much for her to bear. Instead, we were the perfectly normal family with 2 well behaved little girls. Maya also loved going on the carousel and was thrilled to go to Sunway Lagoon a few weeks back.
A couple of weeks ago, right after Jazz dance class, we went to visit Dr Rina who had just arrived in Kuala Lumpur. It was a social visit just to say hi and catch up with her. Maya greeted Dr Rina at her hotel and they immediately started playing together. It was funny to see her playing hide and seek and laughing with her doctor. Maya also said that it was time for her annual check-up and showed her sore toe to the doctor. She was smiling and telling stories and had fun visiting her ‘friend’. After the visit, Maya and I had dinner with Paul and his friend at the fancy Rama V restaurant. It was quite late for Maya to be out, but she was perfectly well-behaved, she was polite and even made conversation with Uncle Anthony, someone she had never met before. It was a long demanding day for a 5 year old, but Maya did us proud.
Maya loves going on holidays, she also loves staying in hotels. When we asked her what she would prefer for her birthday, we asked if she wanted to go on holiday or have a birthday party in KL, she replied that she wanted to have a birthday party at the Hard Rock Hotel in Penang! Unfortunately, we couldn’t afford to do that, so we had a small party for her at a kid’s day spa in KL with manicure, pedicures and hairdos for her and her friends. Maya was thrilled.
We still continue with the GFCF diet at home however we are not as strict as we used to be. After 2.5 years on the diet, Maya can tolerate some casein and gluten, though too much in excess tends to lead to some tantrums, meltdowns and non-compliance. She is on a range of supplements that she still requires such as Vitamin B6, C, cod liver oil, probiotics, culturelle, s.boulardii, TMG, 5HTP, MB12 shots, calcium, magnesium, zinc, biotin, Transfer Factor and Epsom Salt baths. A few months ago, we introduce Vitamin D3, a month later we started DMSA chelation and the next month we introduced LDN cream (Low Dose Naltrexone). Within 2-3 days of chelation, her gross and fine motor skills improved, within 1 week of LDN, we noticed Maya was much nicer, affectionate and more sociable. Hopefully, it will help with her immune regulation too.
A few days ago, we did another round of blood tests with our local paediatrician. Because we were doing chelation, we needed to monitor her health and needed to do regular CBC, renal and liver function test. Though we do chelation with Dr Erwin, our local paediatrician is always willing to help with monitoring her health and do the necessary tests when required. I am extremely grateful for the support and understanding of Dr Nur Atiqah and most especially, for keeping an open mind and receptive to biomed. Though she herself is a not a biomed doctor, as a paediatric GI specialist she is well aware of the GI and immunological issues that children with Autism have. I held Maya while the lab technician quickly and efficiently drew her blood. Maya of course cried, but calmed down soon enough. It was just me, Maya and the lab technician and it was over in 2 minutes. What a trouper Maya is.
She still gets colds and flus like any other child going to kindergarten, but they are less frequent, less serious and she usually recovers faster compared to before. We still wish we could do more in improving her immune function. Due to the colds and flus, our chelation protocol is extremely slow as we obviously could not go ahead with chelation whenever she was sick. We still consult with Dr Erwin Kay, we have been consulting him every month without fail since April 2009. But a couple of months ago, he was so pleased with how far the girls have come that he said that I can ease back and consult him only once every 2 months. And that’s just mainly for follow ups as we are doing chelation and it needs to be monitored. I still feel odd not to see him every month and I feel that I am losing his guidance, though he has always and will still be there for us whenever we need him.
As you know, I am never one to ease the throttle, I believe in going full-speed at most times. I look forward to speaking in Bangkok on 25-27th November. I am honoured to be invited as one of the parents presenting on our children’s recovery at the Integrative Care for Autism Spectrum Disorders Conference 2010. Dr Jeff Bradstreet is the keynote speaker and I always learn so much whenever I see him present. See here for more information on the conference . I hope to see you in Bangkok.
Maya continues to progress and improve even to this day. Her reading is amazing, her writing skills are improving, her language and behavior are like a typical 5 year old. Her coordination in dance classes is better, she can follow the choreogra
phy and pays attention to the dance teacher. Her Mandarin and Bahasa Malaysia vocabulary is growing every week. She has lots of friends, her socialization skills have improved tremendously. Her range of emotions, feelings and communication skills have come a long way indeed. She plays with her sister and we are starting to notice more big sister behavior as we always tell her that she must take care of her little sister. At times, the sisters squabble and fight, but there are more giggles and laughter too. As a proud mama, I can’t help but gush about how incredible my daughter is. At times, I write about the challenges we face with Autism and the treatments we did. But this is me remembering and appreciating my daughter as she is now. She makes me proud ever single day. During our Autism days, every morning I would wake up asking myself if this was going to be a good day or a bad day. Most days were incredibly bad days then.
People used to ask us how Maya is doing, and now it is nice not having to lie for a change whenever we say “She’s doing fine, thanks for asking!” Before, it was just easier to say “She’s fine” rather than explain that she’s still autistic, she still tantrums, we haven’t slept for days, she bit her toes until it bled and she banged her head on the floor again and again. But, we still appreciate the concern….
Nowadays, we still face the normal challenges and stress that any family and parents have. We still worry about our kids health, their future, the state of our minuscule savings, paying the bills, their education, dealing with illnesses and many more. We still have to stretch our dollar to afford the necessities. But now our home is full of happiness and laughter. Without Autism in our lives for the past few years, we would not have appreciated how privileged our life is. Now, every day is a good day….
So though we detoured into Holland, we are back on track in Italy. We look forward to getting Maya acquainted with her Malaysian and Australian heritage. Maya has already shown her love for travel, following in the footsteps of both Paul and I. We both love traveling, long before we met each other and settled down to have a family. And we are pleased to see that Maya too has gotten the travel bug. Maya is excited to go back to Sydney for Christmas. The last time we went back was more than 2 years ago. Since then, we could not afford the time nor the money as all our resources went towards recovering Maya. She keeps on talking about Christmas in Sydney and seeing all her family and friends there. The world is for her to explore, we will keep cheering her on however far she chooses to go…. Selamat Hari Raya Haji and Happy Eid to all, maaf zahir batin.