Just Autism and Me
By Jacquelyn Ang
Of all the things I do, being a mom is the most important. I am a Singaporean married to a Malaysian, residing in Kuala Lumpur. I have 4 kids; of which my second born, Ryan, has a more severe form of autism.
“These stories need to be told!”, my thoughts resounding as I typed out my dissertation for my Masters in Autism Studies.
When I started on this autism journey I wished that I could freeze time, learn as much as possible about autism, before coming back in time to teach my son, Ryan, who is in his twenties. His history is filled with triumphs and mistakes (mostly on my part) – we went through rough periods of aggression and despair. I am not ashamed to admit there were times when it got so bad, I wanted to throw him out of the window of our 22nd-floor apartment and jump down after.
Almost all parents I have met fear for the well-being of their kid on the Autism Spectrum after their death and yet, this topic appears to be a taboo. As for me, imagining myself no longer being in my children’s lives reveals to me all that I need to put in order. I realised if I drop dead tomorrow, even my husband would not know half the essentials for Ryan. And what happens when my husband is gone too? I think my other children know even less (kids, if you are reading this, Ryan’s SOP is on the white shelf in my bedroom). So, I embarked on a new journey in order for this major, unavoidable life transition, for an autistic child to accept death, to be dealt with the least possible upheaval.
To read more on how I did this, please click on the link below:
https://justautismandme.wordpress.com/2017/05/01/facing-the-subject-of-death-head-on/
Today, Ryan is mostly calm, still very autistic and still largely non-verbal. But he can work part-time (albeit in his dad’s office), he shares some of the housework and has surprised me many times with his ability to problem-solve and learn on his own.
There is so much I have learned on this journey of autism and I am happy to share a few important ones with you:
1) Instil right habits & values: It really doesn’t matter whether your child, diagnosed with autism, is high or low functioning. The issues and challenges will be the same, they just take different forms. Having a high-functioning child does not mean things will be better or less challenging if the right habits and values are not instilled. Teach each them to ‘work first, then play.’ Work defined as someone else's agenda and play defined as what the child wants. Eg: If the child wants a biscuit and asks you to open the package; ask the child to do something you know that he can achieve, like sing twinkle twinkle, then give him the biscuit. This can be expanded and is a very important value and habit that has a great, as well as, a long term impact.
2) Don’t focus too much on academic achievements: Think about how life skills or even academic skills can be applied to your child's life. I know many on the autism spectrum, even high functioning, with scholastic degrees or even masters degrees for that matter, and are unable to hold down a job. Academic achievement is not everything.
3) Aim to make your child independent: When you think about independence, even if you are not familiar with any of the autism-friendly strategies, the least you should do is this: whatever you are doing for your child, think instead of doing it with your child. Eg: Involve your child with chores at home. Don’t look down on the value of housework; I have always advocated that home is the first job-training site.
I do hope this will be of good help to parents and give you enough hope to never give up on your child. And for professionals and service providers, to understand families better and be pillars of support in the lives of families with autism. Perhaps this will help narrow that gap of mistrust between families and professionals too.
Since 1998, Jacquelyn had been an advocate for the autism community both in Singapore and Malaysia. She was conferred with the ‘Inspirational Caregiver Award 2012’ from the Singapore Association of Occupational Therapists. Jacquelyn currently holds a Masters degree in Autism Studies (UK).
How ‘MA’rvellous can a mum be to think beyond her own life and prepare her beloved child to be ready for life beyond her death. Jacquelyn, you are MArvellous indeed!
God Bless you for not only sharing your inspiring life journey with us today but for also sharing some practical & valuable tips for parents handling children with autism. I am sure this will be a blessing to many. Deep gratitude coming your way along with a special prayer for you & your lovely family.
Jacquelyn has written a few impactful blog posts, click on the link to read more. https://justautismandme.wordpress.com/
If you would like to contact Jacquelyn on matters related to Autism, you can email her at hijacahk@gmail.com
