Life after 2 years of marathon...(Part 1)

It's April, so its Autism Awareness Month again!

And Aishah just turned 8 last February. This April is exactly 2 years since I last updated this blog. While some people update their blogs every hour, some daily, some monthly, this mum takes two whole years to update a post...haha, lol. Anyway, life has been a complete roller coaster ride for the past 2 years. Let me start by recapping what we have done ...

Around October 2008, my husband and I flew down to Jakarta to see a lady DAN (Defeat Autism Now) doctor , Dr Rina Adeline on recommendation of a very good friend , Marissa Bagshaw, who is also a mother of now a recovered autistic child. Her daughter also sees Dr Rina as their second doctor. We flew down to Jakarta bringing Aishah and was asked to do many 'biomedical' tests which includes the Organix Acids Test (OATS), Urine Phopyrins Test, Hair Test, Stool Test, RBC and a whole list of other tests from a specialty lab that requires 5 huge vials of blood to be drawn out of my poor girl. God knows much of a struggle it was to even get the first vial of blood that by the 3rd blood vial, my husband and I have given up being so stressed that we were practically screaming to each other, to all the lab people there and to our doctor who weren't there (screamed at her on the phone). So we had to call it a day at 3 vials. The next day, the lab team came to our Jakarta apartment trying to draw 2 more vials from her and to collect her poop. And, ohhh.. the poop is another long messy, disgusting story...which i don't want to mention here!

So around a month after that, we flew back to Jakarta for the all the test results and interpretations. She tested extremely high in lead, mercury, aluminium and a whole load of other metals. She had severe leaky gut issues that when we started the GFCFSFCF diet , we immediately saw some great results. No head banging, less self injury, less severe temper tantrums and she slept like a baby. We also started on basic supplements like Calcium, Magnesium Glycinate, Zinc Picolinate, Ester C, Enzymes with DPP IV and others after the 2nd consultation and we saw her got even better than just on the diet alone. Her ABA therapies improved in the sense that she was more 'teachable' and was more 'present'.

Biomedical was so new to us then, that we had to do a very detailed supplements chart, checklist , timetable and a daily journal to chart Aishah's day to day behaviours. We chart her poop texture and colour, her appetite and everything else there is to chart of a 6 year old child. We were hiding her supplements in her rice, noodles, soup, cookies, chips and milk so that she will take them all and that on itself was another huge struggle. So we went back and forth, trying what supplement tastes okey with what, starting so slowly and working up so that she would eventually get her full required dose of supplements daily. So much effort, mess, wasted food and wasted supplements not to mention the huge stress to get to just the full dose of daily supplements as recommended by her DAN doctor.

With every consultation that we had with Dr Rina in Jakarta during that time, we will be bringing a huge bag of supplements checklists, behaviour journal, food and poo tracking journal and previous test results and printouts of all my research works and articles (to discuss with her)....sometimes when I am so tired writing down the exact ingredients of each and every new supplements she takes to discuss it in detail with Dr Rina, I'd just bring the whole lot of bottles and arrange it before her eyes :-) Never once this good doctor showed me an expression of shock or disgust!

I will also have sleepless nights prior to flying to see her due to the brain stormings of preparing my questions and the anxiety of getting to meet my child's 'healer' it indescribable...After each consultation, I will be so exhausted but relieved that i have poured out my worries from my head and shoulders onto hers..it was a great start of biomed, a great teamwork between two people who are serious in bringing back my lost child...and so, off we went...experimenting from one thing to another, adding on this and that and becoming poorer and poorer but happier by the day!

We started on anti fungal therapy, MB12 injectable treatments, Glutathine suppositories and our first chelation using DMSA suppositories (due to Aishah's extreme high lead toxicity) at our 3rd consult which was around February 2009 . Aishah was, as I believe the first ASD child doing chelation treatment in the country ,then, so it was so scary. I didn't know who to compare notes with, what to expect except relying heavily on Dr Rina's support and assistance. That was around when Marissa and I decided that we needed to gather other families doing biomedical treatment in Malaysia for support, advice and resources. we both know it gets very lonely traveling on a road so new and unconventional such as this , and so, in early 2009 KL Biomed Support Group was born with only 2 mothers as members, Marissa and I, and I have Marissa Bagshaw (the group owner) to thank for , for all her hard work of setting up a great support network place for Malaysia parents who are new to biomed!

We are still doing daily 5 hours of ABA home program up to this day and Aishah has since grown out from being a very severely autistic child to what i'd say moderate functioning and mild to moderate autistic child category. By today, we have done countless more new supplements and treatments including Low Dose Naltrexone, Anti Parasite Treatments, Low Dose Chelation and many more under Dr Rina. With all these and more, Aishah has bloomed in many areas including self help skills, cognition , receptive and expressive speech. Though her speech vocabulary is still very limited and sentences still restricted to 3-4 words per sentence, her articulation is so much better and her spontaneous demands are common now.

As all her demands are fully understood and met, Aishah has turned into a healthy, loving, calm and well-behaved 8 year old child with no aggression and no self injurious behaviours like before.
While her road towards recovery is still very long ahead of us, her road coming home towards us is clearer now. Though we may not get her back whole due to where we started and her severity we are still certain that most of her will be back one day. And when that day comes, we will be looking back at how hard we have fought all those years and glad that we never once stopped or hesitated, never took a break or even slowed down, while she was drowning helplessly within her own dark and lonely world.

Love does not take a holiday, and so does discipline..

I will share of our journey with her doing other alternative treatments within this 2 years including our great experience travelling with her to India in Part 2 soon.

In the meantime, Good Luck in your own journey towards recovery!

Supplements for Autism Spectrum Disorder

If you have problems looking for supplements for ASD children in Malaysia.. just email me at: rrafidah@yahoo.co.uk ...... .......................................................................................... "Because getting the right treatment is the right of every ASD child"

Our Little Angel

Hai, April is AUTISM AWARENESS month !

April 2nd is the exact date. At least in America, 'autism' has bec0me a household word.

For those who do not know what autism means, it is basically a complex lifelong developmental disability that typically starts to appear during the first three years of a person's life. It affects the person's ability to communicate, interact or understand as to what is happening around them. Autism affects different individuals differently and to varying degrees. The cause for autism is still unknown, but it is strongly believed that early intensive intervention would greatly help increase the quality of life of those affected. The Autism Society of America (ASA) states that 1 in 150 children in America is suffering from autism and 1 in 94 boys are affected. They further estimated that the lifetime cost of caring for one child with autism ranges from about USD3.5 million to USD5 million. That would be in the range of about RM 13.5 Million to RM 19 Million in Malaysian Ringgit. Imagine that! This lifetime cost includes their medical needs, intensive interventions and education, therapeutic services, caregivers services etc, etc.

This is my Aishah's Story.

Autism in Malaysia is almost unheard of. I have never knew of the existance of such a disorder or came across anybody who talks about it, until 3 years ago. Now, I am proud mother of a 6 year old daughter suffering from severe autism and I have 2 other healthy young boys aged 10 and 13 . My daughter's name is Aishah Farhah and she is my angel.

Aishah was born on the 16th of February 2003 from a normal delivery without any known complications at Tawakal Hospital under Dr Abdul Rahman. She has always been a very easy baby (a quiet one that could entertain herself for hours as a baby) compared to her brothers. I never knew then that , those were some of the early symptoms or the red flags!Her overall development wasn't abnormal except that by the age of 3 she was still babbling like a 9 months old baby. I try very hard to not notice that about her while trying to convince myself I would wake up one day and she would be chattering away just like the boys. But instead, it got a lot worse after that, as she would have less and less eye contact, appeared as if deaf when being called, have great difficulty sleeping at night and throw major 'big time' tantrums out of nothing so frequently and those are really hard to ignore.

To cut long story short, one day a teacher at a school saw her and told me to look up about 'autism' and begged me to try get help for her as quickly as possible. I didn't know exactly what it was nor was i 'prepared' of what i was about to discover. It was a day that I will never forget. In panic I tried to understand what autism means that day. I came across articles and articles about autistic children. That was when this 'huge train hit me right on the head' or rather that was exactly how I felt it at that point. Aishah was exactly or almost exactly like those children they describe autistic. How could anyone possibly have known her and had described her so precisely in all those articles? And all pointed to this thing they call 'autism'.

I desperately needed someone to urgently tell me that Aishah is not like those kids I read about, so I flew to the nearest doctor who have seen her many times for re assurance. Instead, I ended up with streams of tears together with that kind doctor who didn't seem to know very much about this autism thing either . I sobbed and cried together with her until we both finally realised that all her other patients have been kept waiting anxiously for hours outside. When I had the strenghth to call my husband on the phone, I broke down again and we both ended crying not knowing what to say. The cryings must have went on for weeks. That must have been one of the darkest moments in the journey of my life. As if things were not bad enough, my father who heard the shocking news and suffered a heart attack. He has just been discharged from IJN and the news must have been more than he could handle. He suffered another attack and passed away peacefully on his rocking chair in his home 2 weeks after the news.

Right after that, even though both my husband and I knew we could never afford it, I quit my banking job anyway, determined to stay at home fulltime, wanting to make up for the lost time while struggling to help Aishah improve in whatever ways possible, but that didn't seem to help her at all...she didn't improve a bit even though I was there with her at home 24hours a day .My presence at home was upsetting me even more because by then, I was able to see for myself how her typical day would be like. And she was getting worse and worse by the day.

Finally my husband and I agreed that the only way was to get someone who really knows 'autism' help us save our drowning daughter. That was when we were introduced to an American consultant from Winsconsin specializing in young autism. Her hourly consultation charges were unbelieveably high, so high that we know there is no way we could ever afford it but God knows we were so ultimate desperate then, so we went ahead with the services anyway. So, she and another local consultant came to our home and help us set up the very costly Applied Behaviour Analysis (ABA) Home Program for Aishah. By then it was already February 2007. We were told to recruit about 3 to 5 teachers (which they call therapists) to be trained by them to work with Aishah around the clock and we dilligently did. We advertised for therapists everywhere and finally got hold of Stephanie, an American lady with a psychology background as our team's Lead Therapist ( she was in Malaysia on 6 months holiday) , Sarah ,a dedicated teacher from New Zealand as the main therapist and 2 others plus myself to be trained by the consultants to work with Aishah. With this 'Aishah's rescue mission' all set up, we started taking turns working on her 7 to 8 hours a day everyday to make her get at least 32 hours of therapy a week. Finally, at this point, Aishah stopped regressing (deteriorating further) .

The program has been going on for more than 2 years now , God willing, until today even with very many therapists came and went. The first year was an absolute nightmare. There were so much to do and especially mentally torturing having to not only conduct therapy sessions, prepare teaching materials on a daily basis, going from shop to shop hunting for new toys as reinforcers, endless trainings and retrainings of new therapists, running around transporting therapists as some doesn't have their own transports, attending more workshops in all corners of the country and doing all the reasearches from the internet, plannings and therapy schedulings on a daily basis. It was so exhausting that basically ABA, at that point, was the only thing my life was all about. It was the only thing I had time for.I think about it every minute of everyday from the moment I opened my eyes. And even with these major stress overload that we have to put up with, everyday, not to mention the thousands and thousands of hours spent on it plus the enormous financial investment we've put in for this whole program, I must say, it was all still, worth the while. We still tell ourselves until today, that we can't afford to continue this for Aishah anymore, as we have been so financially drained,so mentally exhausted but yet, until today, we are still doing it. We do it so dedicatedly everyday up to today, with whatever little that with have left with God's help, because that was our promise to our little angel.... 'For as long as it takes...'.

While I know deep down, that this program will never cure my daughter the way i hoped it would (I have read and heard many stories of miracle recoveries in many young children who do ABA, especially in America) it has however help me and our family managed many of her behaviours which were impossible to be more managable. It has also in so many ways brought our family back together, teach her to play with us and her brothers more meaningfully, do our family things together and most importantly, it will be the source of teaching us how to continue to reach out to Aishah. We found ourselves learning more from her than she from us. We learn most from her about the real meaning of patience, unconditional love, dedication, dreams and hope. We also put our absolute faith into God's hands much2 more now and find ourselves to be at peace accepting whatever his will would be upon us.

Now, after more than 2 years, Aishah has came a very long way to be where she is, even though what she is today may not be much if compared to a child her own age. She could now request in a 3 word sentence for few things that she needs and understand very simple instructions. She strives to learn new things patiently every day as we teach her, dedicated to try understand life as we put to her. This is more than enough for me. I don't have big expectations of her nor do I know what will become of her future. We take one day at a time and we try to enjoy and make the most of it everyday. I don't have plans for her because I believe God already has one. For now, we will just do what we can, for as long as we can and meanwhile pray that what we are doing, is the right thing for all our 3 children.

I know every family who lives with autism have their own unique inspiring stories. I know it feels so therapeutic to be able to share them with those who knows , those who share the same dreams, the same journey and experiance as us. I would love to share more stories of my own in the hope that it would do some good to those who are on a journey like mine, and if possible, I would love to hear yours too. So until next time!