Tuesday, 5 March 2013

بسم الله الرحمان الرحيم

I am starting this blog as a record of my son Jojo's "journey" on the MMS protocol.

Jojo is a loving and affectionate 10 years 11 months old boy at the time of writing.  He was diagnosed with autism when he was 3 years 2 months old, in June 2005.  

I remember it being a very dark time then, when we first received the diagnosis.  At that time in Malaysia, there were only a few centres that taught some form of ABA therapy, some freelancers who provided one-on-one home therapy but not much more than that. We didn't know what to do nor where to go to get help but God sent us angels in the form of Mums who had already been fighting the good fight for their children with autism.  These wonderful ladies helped us and guided us to getting Jojo an ABA therapy programme going at home from October 2005.

We only started biomedical treatment for Jojo in December 2005. I decided to give it a go because my mother's instinct told me that Jojo suffers from egregious tummy problems.  I also knew he was allergic to cow's milk at the time (didn't know soy had almost the same effect on him and was giving him soy milk :( ) I didn't know any other mother who did biomedical treatment for their child with autism then.  Through the help of a DAN! Rescue Angel, I was put in touch with a DAN! Doctor in Jakarta, Indonesia.  I brought my little man to Jakarta, endured the amazingly horrendous traffic congestion to and fro her clinic in Bogor (it's still a marvel how he took being stuck in the car for 3 hours without a meltdown then!) and started him on the DAN! Protocol of supplementation.

His blood sample was taken and flown to the US to be analysed and the results came back positive for an entire list of food allergies as long as my arm.  He was promptly put on a GF/CF/Sugar-Fee diet then... and remains on the diet till this day.  We saw a lot of improvements with the GF/CF/SF diet.  For one, he stopped wanting to run head-on into walls and stopped bumping into things and getting bruised all over.  Prior to the diet he'd bump into tables/chairs/walls and not feel any pain. He used to stumble a lot too when walking.  He stopped lining things up (everything imaginable!) too when he started the GF/CF/SF diet.

Jojo is non-verbal, he was beginning to say "Baba" and "1,2,3,." when he fell ill at about 20 months old and lost his ability to say those words. (His elder brother was also a late talker... but once he started talking....! :D) ABA therapy taught Jojo to be compliant with instructions, recognise receptive labels, play appropriately and all in all be able to deal with the environment around him. At that time, we also sent him to Occupational Therapy (OT) sessions to deal with his Sensory Integration issues.  The OT helped him  a lot with his motor skills and his sensorial needs.  He became more confident when at the swimming pool (going on the slides himself) or at the park where he'd enjoy climbing on the monkey bars.

It was only a couple of years ago that I got to know two wonderful ladies who started the KL Biomed Group for children with autism.  Rafidah and Marissa, may the blessings of God always be with you and your loved ones.  Thank you for all that you do for us Mums who flounder around (in desperation for the most part!) looking for what can help our children.

I am realistic about biomedical treatment, as I am about ABA therapy.  Each protocol/therapy may work amazingly for some but not for others.   I do not expect miracles nor a cure (but if it is on the cards, I'd take it any day! :) ) but I trudge on hoping that something is going to *click* for Jojo, be the missing piece that unlocks the doorway to healing.... and possibly, cure.

So we begin with Bismillahirrahmanirrahim... In the Name of Allah, the Most Compassionate, the Most Merciful...