“My Father is a Superhero”

Growing up, I believe many of us have written a poem with this title. Indeed, fatherhood is not a simple venture, what more for fathers that are raising children with autism? The demands of fathering kids on the spectrum quadruples in many forms, from financial resources, navigating the family as well as the day-in and day-out tending to a special needs child. Nonetheless, they work their hardest in fighting for the best chances for their kids, be it therapy sessions, schools, future, and overall quality of life, they make every effort to provide the greatest they can offer to their kids.

Kinship bliss takes a different form for fathers of children with autism. For some of them it is an impossible luxury to hear a “daddy” from their child, yet all they provide is unconditional love and support, as well as the unwavering faith in their children’s potential. In conjunction with Father’s Day this year, we have interviewed two amazing fathers, on their journey of fatherhood raising their child with autism. Here, they shared all about the challenges, achievements, lessons learnt, and how raising a child with autism makes their hearts grow bigger.

Dr. Satesh

Dr. Satesh is the father of Dylan, a 7 year-old boy with autism.

1. What is the biggest change(s) your child has brought to your life?

Dylan’s presence as my youngest son in the family has enhanced our joy and happiness as a family unit. As an individual, he is a very loving boy and enjoys spending his time with the ones who care for him. He was diagnosed with ASD 2.5 years ago, when he was 4 years old. We observed that as a 4-year old, he wasn’t responsive to instructions, lacked eye contact and was non-verbal. Because of these milestones which he had yet to achieve, we brought him to a medical specialist and subsequently to EAP, post-diagnosis. Obviously, the biggest change occurred when we as a family realised that Dylan needed special care and support due to his diagnosis and this shifted my perspectives and made me re-prioritise what was important to me, in my life.

2. As a father of a child with autism, what are the challenges you face that are usually overlooked?

The challenges faced, normally centre around the need to constantly attend to his wants and behaviour. Any lack of attention given to him results in him behaving erratically. It is a challenge because I need to also allocate time to the rest of my family as well as to my professional life. However, I realised that the opportunity which arose from this challenge was that it allowed me to spend a lot of time with my son, understanding his needs and learning how to manage his behaviour from what I learned at EAP.

3. What are your proudest achievements of your child?

The proudest moment was when he was able to imitate words, verbally. He was about 1.5 years into his therapy at EAP and he was doing very well at his imitation programmes. One day I thought I would try and sit him down and attempt to get him to repeat some easy, three letter words. I started with the word “car” and he repeated the word, loud and clear. I continued with a few more words and he was able to repeat them well enough. Needless to say, I immediately jumped onto the phone with his supervisor, sent her a video and we started the verbal imitation programme after further probing. I recall when the rest of the therapists at EAP Bangsar heard Dylan speak, they were overjoyed and surprised – definitely the proudest moment. 

(Dylan receiving his certificate from the Deputy Minister of Education, Teo Nie Ching)

An honorable mention was him getting a certificate from the Deputy Minister of Education at one of EAP’s family days. That was nice to see. 

4. What are the lessons raising a child with autism has taught you?

The biggest lesson learnt was patience and understanding. Early on in his diagnosis, I didn’t understand the reasoning for his behaviour. I thought it had to do with him just being naughty. Throughout the years and education learnt from EAP, I began to understand what was behind his behaviour traits and this taught me to be more patient and to analyse his behaviour before responding to him. In the last 3 years I have definitely become a more patient, calm and tolerant person – which is nice!

5. What is your Father’s Day message for all the dads out there? Can you offer some encouraging words to the other fathers who are also raising a child with autism?

Children are a gift. You truly learn the meaning of unconditional love when you become a father and this is amplified when you have a child with special needs. A God fearing person once told me, “God only gives these children to angels” and my wife always says that she is thankful that Dylan is in a family that can care for him and give him the best possible support so he can excel in life. I am aware that there are families out there that cannot afford the support that I provide for Dylan. I take solace in knowing that in today’s world we know quite a bit about ASD and how therapy can be administered to support children with ASD. Techniques are easy enough for parents to learn and practice with their kids, if they cannot afford to pay for therapy. Dylan and I are the lucky ones and to those fathers who are raising a child with ASD, enjoy the journey – I know it’s not a planned journey, but you are behind the wheel and your child is a passenger you’re in love with.

Andy

Andy is the father of Isaac, a 4 year-old boy with autism

1. What is the biggest change(s) your child has brought to your life?

Having a child is always a challenge, but having a child on the spectrum brings a whole new set of challenges. I guess with Isaac being our first child, we never had any prior understanding of what the differences were between a typical and atypical child, we were just parenting Isaac and that was that.

Having Isaac has really changed the way I view the world and more importantly myself. Isaac really has helped me develop my levels of focus, patience and understanding as a parent. I also find that I am more empathetic towards other people’s needs and I am definitely less judgemental. Overall, Isaac has made me a better person.

Regardless of the challenges and the changes that have been made, I have a greater understanding and appreciation of what it means to love a child, regardless of their ability.

2. As a father of a child with autism, what are the challenges you face that are usually overlooked?

I guess the biggest challenges are the ones that parents with typical children sometimes take for granted, such as potty training or learning to read etc. With Isaac, he still has the capacity and potential to rise to these challenges, but they need to be thoroughly thought out and planned – that’s the key challenge, the planning of everything.

Regardless of what challenges we meet, these are the things that make Isaac who he is. Plus, they are not really seen as challenges anymore, they’re now just part of our day-to-day routine.

3. What are your proudest achievements of your child?

For most parents, it’s the big things that are seen as proud achievements – first steps, first word etc, but for me, it’s the small things that fill me with pride more – following a simple instruction, 100% complete engagement at a single moment in time, a loving interaction with Jacob (his brother) – offering a kiss and hug because he wants to show affection. These are the things that fill my heart with joy and make me proud of Isaac and the progress he makes on a daily basis.

4. What are the lessons raising a child with autism has taught you?

Initially, things will go wrong more than they go right – but it gets better. You just have to remain patient and understand that your child is doing all they can – they just need to be guided a little more to achieve what they are being asked to do.

There is for sure a lesson in resilience to be learned as well. As a parent to a kiddo, you will achieve things in a way you never knew you could, you find out that you are more creative than you thought – sometimes it works and sometimes it doesn’t, but that’s ok, you just have to keep trying. At times it’s tough, but when we see Issac completing a task or command, it’s all worth it!!

The biggest lesson is showing myself that we can handle Isaac’s autism as a family – it’s not the end of the world, we’re just now part of a different world – one that can still offer special moments and fulfilment.

5. What is your Father’s Day message for all the dads out there? Can you offer some encouraging words to the other fathers who are also raising a child with autism?

Keep up the good work – you are doing a great job (the Mom’s are too!!) – you are not alone. Happy Father’s Day!!

To all the incredible fathers out there, you are the best! Here are a few appreciation letters and drawing from some of our kiddos to their dads, which will hopefully warm your heart too!

Happy Father’s Day from all of us at EAP!