2009- Bidding adieu to troubled thoughts

This past year I have learnt so much and Alhamdulillah some lingering insecurities about my knowledge on autism and how to handle it have been replaced with a renewed confidence in my own personal beliefs in how to best raise Raiyan and help him handle his autism.

Even though admittedly I’ve always been drawn to debates like how a driver finds himself forced to look at roadkill, I’ve now pretty much abandoned the possibility of any common ground amongst the various camps in the autism community because autism is just too wide an issue comprising of thousands of nuances in severity, symptoms, reactions to treatments, sensitivities and beliefs.

But just for closure’s sake, I am going to state right here what I have learnt to accept:

1. I don’t believe vaccines cause autism but I do think that there are some children that have some kind of pre-disposed gene that may be made worse by vaccines and this may lead to more obvious autistic traits. I believe Raiyan was born autistic but because he was 7 weeks premature, his immune system was probably weaker and environmental factors may have affected him more and made his autistic traits worse.
   

2. I fully believe in the powers of early intervention and thus parents rather than continuously living in fear and denial over whether or not their child is autistic or not, should just seek help and start their research into the many types of available treatment as early on as they can.
   

3. I fully believe in the powers of ABA or any behaviour modification therapy as the basis and the mechanism to treat the child-whether it’s to treat obsessions, repetitive behaviours, speech, sensory issues, motor skills issues and social skills. I believe that Raiyan worked hard and was continuously motivated not only by the rewards he was promised but by his own successes at the end of it. Of course, the first few weeks or months or even years would be hard but we always have to picture the end goal and providing no verbal and physical abuse are involved, a parent should not have to be guilty about subjecting their child to repeated amounts of teachings and disciplining because we are only doing this to help our children in the future. Susah sekarang, senang kemudian kan..
   

4. I would prefer more energy being exerted to focus on finding appropriate treatment and fighting for governments to provide treatment both medically and educationally rather than spending resources and energy on finding a cause and cure.
   

5. Autism cannot be cured. This is in the sense that you can’t just turn an autistic individual to become “non-autistic”. The autistic way of thinking will always be present and I have always believed that’s what makes these individuals so special that if you even begin to understand it, you would be quick to think how ludicrous it is for anyone to search for a cure to exterminate it.
   

6. Autism however can be recovered and I do believe some parents who have said their child has “lost the diagnosis.” When Raiyan was diagnosed, he scored under average for simple things like knowing the purpose of objects, describing the attributes of things and recognizing basic emotionos because unlike typical children, those things did not come naturally to him. But now, he is able to do them because he has been “taught” it through the therapy. Along with constant teachings of many other things and Alhamdulillah with Raiyan being able to generalize what has been taught to him, Kerri thinks he’s on the way to losing his diagnosis and is quickly catching up with his peers! Having said that, traits like difficulty with social cognition and sticking to rules of conversation would probably always stay and would be something that Raiyan would need to work on for life. Those are the autistic aspects that will probably stay with him but that’s OKAY. Having those issues do not preclude him from leading an independent life. When I talk of Raiyan improving, progressing and even now I am more comfortable with saying, RECOVERING, I am looking towards him growing up to be able to live independently and adapting to situations whilst being able to "handle" his autism along the way. Because I know Raiyan is on the higher end of the spectrum and with how much he has succeeded in the past year alone, why shouldn’t I have such dreams?

I am not writing all this to convince others to share my points of view. More than anything, it serves as a reminder to ME as to how I really feel deep down about all this because I still find myself getting easily swayed after reading the countless amount of autism literature out there.

I need to start focusing on what I personally believe in and not waste further time deliberating about why others do this or that or say this or that. I’m also tired of fearing how others may interpret my blog because I know not all autism parents would agree with me and would still find fault with what I’m doing with Raiyan. But at least, I have tried to make clear my positions on the above contentious issues.

What I would still love to do is find other parents, even if it's just a handful, that are in the same boat as me who-

• strive to keep the picture of autism a positive one;
• accepts that these kids are hard work and require constant dedication and attention;
• understands that no parent is in any position to judge what another parent does;
• do not resort to name-calling or attacking language;
• are not guilty or insecure about their actions over their child for fear of being judged as being a bad parent;
• feel blessed with seeing their children’s progress; and
• celebrates every little achievement (that incidentally would help make it easier to put aside any negative and attacking comments as nothing more than fluff!)

Wishing all pweshes autism families out there a great and fruitful year ahead!! Amin!