PatientsEngage held a webinar recently on ‘Dads can make a difference to emotional well-being of a special needs family’ with three well-informed and articulate fathers as panellists sharing their experiences, understanding and insights. We bring you some interesting highlights.
Fathers with children on the autism spectrum disorder (ASD) experience many challenges of parenting. Though their involvement may be less as compared to mothers, they still need to play an integral and important role in engaging and connecting with the child for their overall development and happiness.
Participating Fathers
- Sriram Narayan - Management Consultant and father of Nishant, 24, an intern at Amaze Charitable Trust, Coimbatore and national bronze medallist for cycling Special Olympics.
- Dr Ashok Shah - Surgeon and father of Aditya, 24, graduate from Mumbai University.
- Ajai Vadakkath - Retd Commander from Indian Navy and father of Siddarth, 18, a wonderful teen who lives ‘in the moment’ and reminds them everyday to do just that.
Most difficult years
The most difficult phase would probably the pre-pubescent age when both parents and children are struggling to learn, adapt and adjust to new experiences, emotions and developmental challenges. As children hit the age between six to twelve, they have to grapple with a whole range of motor, social, emotional and physical changes. This can deter them and often lead to temper tantrums, aggressiveness, anxiety and even self-injury. Parents, on the other hand, are striving to accept and fully understand their children. It can be tough for them to figure out what is best for their child, the best therapies and medicines. They are anxious and worried about getting the right treatment and finding effective ways to deal with your child. But, till the right approaches and attempts have been identified, and till the child calms down and is comfortable, if can be a very tough phase for both the child and the parents.
Navigating difficult years
There has to be a partnership between husband and wife. With autism entering your life, there has to be a resolve between the parents - a resolve to do the best for your child. Dads have to learn to be a part of the therapeutic process. Get onto the same page with their wives. Understand what the disability/disorder is all about. Both should be talking in the same language, discussing the abilities and challenges of the child together. It is a partnership. Both have to apply the same amount of rigour and love to help the child move forward. If your wife is spending 24 hours with your child, how many hours or minutes can you as dad contribute to give her respite. Your wife is under stress. She needs to be helped.
Point of acceptance
Acceptance comes when you realise the real potential of your child. There is a grief cycle. In that cycle you go very low up to a point of depression, Ok. This is what it is…from here how do we take it forward. This is what your child can do, this is what he can’t do. I am not going to push him any further. Sometimes point of acceptance can be pretty late. There can be depression, non-acceptance and holding back. But ultimately you have to balance and work on things which are best for your child.
Connecting and engaging with child
This can happen at various ages.
For Dr Ashok, an eye-opening moment came when Aditya was about five years old. He returned home very later one night from hospital rounds and was shocked to see his son sitting near the door waiting for him. Since then he learnt to share and confide in his son more, and also share his schedule and whereabouts.
Ajai took a dive in his career from the Navy to be with his son, Siddarth. So I was hands on from maybe when he was three-and-a-half onwards. After that I began building a bond with him. I would make short goals of taking him for a walk, taking him to the park, reading to him. I did not set any goals with any expectations of results. I was not looking for stellar achievements, but just one thing at a time.
Sriram, who was busy with his career and travels, realised that communication and interaction was the key for his son Nishant’s development. We had to help him communicate with basic things. It was then that I got more involved. Till then I was disconnected. He was being looked after more by his mother.
Do you recommend seeking marital counselling or couple counselling?
I would say yes. It is very important. Mothers get tips from their mothers, mother-in-laws, grandmothers, and other female relatives from the time of conception. They have an emotional support system. Father, unfortunately, feel left out. And this feeling gets magnified especially when there is difficulty or challenges with the kid. There is a lot of stress. And the stress comes from various factors. The main concern comes from how do you steer the kid forward. Dads can reach a breakpoint, hence it is very important to seek some professional help to set you back on the path. There is nothing wrong in it. It is for you to maintain your balance. Otherwise the family becomes dysfunctional. Seeking professional help is very much required. Therefore you must seek help. Don’t wait to reach the end of your tether. Speak to a friend or a fellow parent, or dad groups, if they are there. Your child may not be everything that you wish for in a child, but you can be the best dad that any child can wish for.
Identifying special skills for independent living or potential source of earning
What if my son cannot earn a living. Let us pretend that is the reality and move forward. You know what my son is good at – making me smile. He enjoys going for swimming. As long as he is happy, that is good enough for us. We are also having very unrealistic expectations from our children. My son has garden-variety autism, plain vanilla; nothing exotic about it. Ninety per cent of children with autism are the same. Yes.. our endeavour should always be to make his reach his potential. We should never fall at that.
Take home messages
Ashok - As a parent of a special needs child, I think every child is unique in his own way. We have to lead a humble life, be humble in society, with friends, but be ambitious for your child. Never give up. Do everything for your child.
Ram – Two things I would like leave for all fathers…
- Get to know your child as much as possible because you can be the best friend for your child. In fact, you will be the best friend forever.
- Start living. Start taking life as it comes. The future is there. It is something to be worried about. The past has happened. There have been mistakes. But now what can you do to make a better tomorrow. Just look at it from tomorrow’s perspective. There is no point in cribbing, cursing, getting worried. Be happy.
Ajai - My thoughts are similar. Be your child’s best friend. Kick a ball with him, go for a swim. While your child may not be everything you wished for, you can be everything they wished for. That is up to us. We have no excuse for not being the best dads.
Don't miss the webinar below
