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Father’s Day Tribute: A Chat With Fathers Of Children With Autism

By June 15, 2020 No Comments

Fathers don’t often get the limelight or credit they deserve for raising children. We celebrated Father’s Day annually to show gratitude to our fathers for all that they do in front and behind the scenes for us. We spoke to three amazing fathers to get a glimpse of fatherhood—its blessings and hardships. 

Luke

Luke is a father of three beautiful children, and is married to Sumika.

Can you tell us a little bit about yourself and your child?

I’m Luke Hurford, from Australia and have been working in Malaysia since 2011. I have three kids aged 7, 4 and 3. Sawyer, our middle child has autism. 

What have been some of your best moments and challenges as a father of a child with autism?

Having a child on the spectrum, I have discovered a deeper sense of satisfaction and celebrate successes differently to if I had only experienced parenting a neuro-typical child. Sawyer does not learn some skills or accomplish things naturally through imitation as neuro-typical children would. It has been a joy to watch him acquire new skills and a privilege to provide him with the opportunities to practice those skills in daily life until it becomes second nature. Helping Sawyer achieve his potential has become a harmonious passion, so there are constantly wonderful moments. 

One of the biggest challenges to date are lack of sleep for Sawyer, my wife, and I. Dealing with some of the initial emotions that came with the diagnosis, such as grief and fear, were also challenging.

How often do you spend time with your child? What are some activities that you do together?

Through the activities we do, I try to incorporate ways to work on the cooccurring symptoms and conditions associated with ASD. This includes helping Sawyer develop motor skills through games and play, an emphasis on healthy eating, and promoting more social engagement. Daily, we go to a park for a walk or go for a swim. On weekends, we do outings to Jump Street, Farm in the City, Sunway Lagoon, or SuperPark. We started with short visits, gradually increasing tolerance to these places, and now Sawyer requests these play areas. 

With Coronavirus around, we go on long walks to reinforce nice walking, Staying With Me, holding hands, and greeting people. We do 2 x 3km walks most days around KLCC park each morning and afternoon and he walks nicely the whole way now.

Each night, Sawyer requests that I become a monster and chase him and his siblings around the house. The steady improvement in his engagement and interaction has been fantastic!

How do you manage and juggle the pressures of work, marriage, and family?

I try to run for an hour each day. My wife and I laugh a lot and forgive any annoyance quickly which has helped in our marriage. I have found that in terms of juggling priorities, people are generally empathetic if they see you are honest and trying your best. 

Can you share some words of encouragement to other fathers who are also raising a child with autism, especially for fathers who may have just found out the diagnosis for their child?

Be optimistic, it will influence your behaviour and impact outcomes. 

Learn the strategies to help your kid as skills have to be integrated and generalised into daily life. 

Every family will find their own way of approaching an autism diagnosis. There is no right way. We will all be influenced by our experiences and biases or preconceived notions, but what is important is focusing on what genuinely works for your child- find a process that objectively works for your child, great professionals to support your child, activities you can enjoy with your child, and remember to celebrate every success. 

I have made some great friends with parents of children with autism and we celebrate successes together. Each child is unique and has different skills and strengths, but we celebrate every success. We do not compare with each other; we compare yesterday to today. Today need not determine tomorrow, so apply a growth mindset and as you help your kid achieve their potential, I think you will find great joy.

Mark

Mark is the father of Mito, married to Leah.

Can you tell us a little bit about yourself and your child?

Mito is turning 10 this year, and he is our little big boy. He has the temperament of a small child – sweet, easily amused, physically affectionate. He has Intellectual and Developmental Deficiency (IDD), Attention Deficit Hyperactivity Disorder (ADHD), and Autism.

What have been some of your best moments and challenges as a father of a child with autism?

Since Mito is non-verbal, our biggest challenge is trying to decipher what goes on in his head. If he is displaying some new behavior (whether positive or negative), we have to be like Sherlock Holmes and decipher what he’s trying to tell us by detecting and analyzing clues. Sometimes it can be frustrating, especially for Mito, when we can’t decode what he’s trying to communicate. That’s why it’s important to approach him with an open mind and not let our preconceptions define what we see. We have to look without biases or expectations so we can actually see what he’s doing and why he’s doing those things.

The best part is Mito’s very sweet disposition. He loves hugs and he loves playing wrestling with me.

How often do you spend time with your child? What are some activities that you do together?

I used to have full-time office work (as PR Manager of a multinational tech company) but when my wife was offered an international post (Switzerland), we knew that uprooting our family and moving to a new country would divest us of the social support that we enjoyed from family, friends, and even helpers. One of us had to stay at home and take care of Mito’s needs. As such, I spend all day with my son, except when he’s attending therapy or school. I am the one who wakes him up in the morning, guides him in the morning rituals (breakfast, hygiene, getting ready), and brings him to school. After his school or therapy, we play, have dinner, do evening rituals, and get him ready for bed.

While we have an easier time here in Malaysia (almost all people speak English as well as the presence of a helper), I am still Mito’s primary caregiver. I am the one who probably has the best chance of interpreting his minute facial expressions and gestures and translating them into something we can understand.

How do you manage and juggle the pressures of work, marriage and family?

As I am Mito’s primary caregiver, I have shifted to work as a Tech/Lifestyle writer for various publications in the Philippines. As such, I can adapt my writing schedule to when Mito is busy with school. My wife and I work as a team and provide ‘cover’ for each other when one of us needs a break. It is important to always have the mindset that you are a team – you lend your strength to where one is weak. This can be done in big and simple things – even to something and quotidian as who wakes up earlier in the morning to prepare stuff because the other needs more sleep.

Can you share some words of encouragement to other fathers who are also raising a child with autism, especially for fathers who may have just found out the diagnosis for their child?

Receiving a diagnosis as impactful as autism can make you feel violated — suddenly, it feels like the whole world has bound and restricted the child you love into something less. All at once, it can feel like your child’s future is limited, that so much is taken away from him. You’d want to lash out against the world, angry at the universe for letting this happen to your child, and overwhelmed with all the things that need to be done in order to give the help and support that your child desperately needs. All that is ok.

 You have to realise two things:

  • All your feelings are valid. Your fears and your anger and helplessness are all justified. Recognise them. Accept them. Do what you need to do to help yourself. And then there is the second thing, which is more important than the first.
  • Realise that however you feel is never as important as the welfare of your child. You feel inadequate? Your child still needs you. You feel morose? It is important that your child has a positive environment. You feel tired? Take a deep breath and begin again. Know that no matter how ineffectual you feel, you are still the best caretaker your child can have.

This is, of course, incredibly taxing, and you need to find ways to fortify yourself for the battles ahead.

For my family, our strength has always been our faith. We know that if we just rely on ourselves, we will inevitably fail. The unanswerable questions — why him? what happens in the future? what happens when we’re gone? — are all beyond us, so we lay them down at the Cross. We love our son like we’ve never loved anyone before; and yet we know Jesus loves him more.

 

Fairuz

Fairuz is a father of four, married to Nik.

Can you tell us a little bit about yourself and your child?

I am a father of quite a big family consisting of 2 younger daughters and 2 elder sons. My second son, Sinan, aged 14, has special needs.

What have been some of your best moments and challenges as a father of a child with autism?

One of the best moments was when Sinan succeeded in his Open Water Autism Swim. He started off with a 500m swim at Port Dickson, followed by a 1km swim at Pulau Redang the following year. Last year, he did a tremendous job completing a 2km open water swim at Pulau Redang again. Despite wanting to quit a couple of times near the halfway mark, he persevered with encouragement from his coach who swam next to him the whole time and was able to accomplish this spectacular feat!

Recently, I have been looking forward to seeing the paintings that he brings home from his weekly art class with a teacher who specialises in teaching children with special needs. He is so talented, and I am very proud of him.

How often do you spend time with your child? What are some activities that you do together?

Before COVID-19 and MCO, our weekly routine included going to a place of his choice- different malls in the Klang Valley area or sometimes hospitals too.

Most of the time, we end up window shopping or stopping by the kids play area. That said, nowadays he is not allowed into most of the kids play areas due to his age and height. Although his disappointment is evident from the expression on his face, we are thankful that he is able to understand why he is not allowed in and does not make a fuss about it. 

How do you manage and juggle the pressures of work, marriage and family?

I think it is important for the whole family to have a mutual understanding and willingness to tolerate the situation, especially when Sinan is moody or gets physical. Getting the whole family’s understanding has been helpful in balancing his needs, the needs of the rest of the family, as well as work. Fortunately, Sinan has also learned to read the situation and will not disturb me when he sees me working. He will generally mind his own business- browsing pictures or videos on his phone or watching YouTube on his Ipad. 

Can you share some words of encouragement to other fathers who are also raising a child with autism, especially for fathers who may have just found out the diagnosis for their child?

Firstly, always think positively, especially during challenging or difficult times like when your special kid is moody and temperamental. 

Following that, I have also learned that prevention is better than reaction. In other words, it is better to prevent your child from getting moody or temperamental than to respond reactively when they are having a tantrum. It can be very difficult to calm them down and can even get physical once they have a behaviour. So, it is better to avoid that situation entirely by understanding and attending to their needs to calm them down before a behaviour occurs. 

Lastly,  it is also important to recognise that every child has a talent, even if it may not yet be evident. So do not lose hope, pray, remain patient and positive as you continue to help your child discover their untapped talent and potential.

 

From all of us at EAP Malaysia, we would like to wish all dads a Happy Father’s Day!