We see and hear so much about mums and how they cope with their parenting journey. The dads: not so much.
What we do know is that dads are important. What they do and who they are bring so much to our family lives, our personalities and create a richness and diversity in our upbringing.
We wanted to celebrate dads – and try to understand them a little better – so we gathered a group of awesome guys, all of whom have a child with a disability, and asked them the tough questions.
Meet our dad panel:
Married to Erin and father of Jaimie (13), Xavier (12) and Jack (11). Jack has cerebral palsy spastic quadriplegia. They live in Tasmania.
Married to Joanne and father of Joseph (13), Christian (11) and Jacob (seven). Jacob has Angelman syndrome. They live in New South Wales.
Married to Sally and father of Maxwell (15 months). Maxwell has hypoplasia of the corpus callosum, hypertonia (low muscle tone), developmental delays, visual eld abnormality, dysplastic kidney, undescended testicle and they are waiting on the results of cardiologist and genetic testing. They live in Victoria.
Married to Amanda and father of Jamie (eight) and Dylan (six). Dylan has Down syndrome. They live in Victoria.
HOW DID YOU FEEL WHEN YOUR CHILD WAS DIAGNOSED?
Frank – It was a shock. We had never even heard of Angelman syndrome before. At the beginning, we didn’t know how to deal with the diagnosis and we distanced ourselves from friends and family. But once we accepted it, we began to research and thought the best way to help Jacob was to raise awareness about AS and become more proactive.
Chris – Erin was at the hospital with Jack when she was informed that he had brain damage and the way the news was delivered was not the best. Erin rang to tell me – and it was the most devastating call I have ever received. I was angry for the way Erin was being treated and the little support she had when the news was delivered. I was frustrated at being so far away. I was upset because I didn’t really know what was going on but most of all I felt useless. I didn’t know what I could do to help besides getting to them as soon as possible.
Johan – I was extremely overwhelmed by emotions. I didn’t know what my child’s new normal would be or how much our lives would need to change to support him and give him the best possible start. You have all these preconceived ideas in your head of your son potentially following in your footsteps, and knowing that that’s not going to happen is something I still struggle with.
Tony – Dylan was diagnosed with Down syndrome approximately 30 minutes after being born – no scans prior revealed any concerns or diagnosis. The diagnosis was a complete shock and I guess I was in denial initially and perhaps angry but I was quickly snapped out of it after learning that Dylan was experiencing breathing issues and my only thoughts were for his health and safety.
DID YOU FEEL SUPPORTED?
Chris – At the time of diagnosis, I would say no. There was one nurse in the hospital who sat with us at times to try and explain what was going on but there were so many questions that no one had the answers to. In retrospect, we can see that people were trying to help us in a very difficult situation but we still believe there are things that could have been handled a lot better. The support from family, friends and the local community was amazing, though. People even volunteered to look after our business while we were in and out of hospital, which took a massive load off our minds.
Frank – In the beginning, no. We felt like we were in a dark void and no one understood what we were going through. It wasn’t until we found out about FAST, that we felt there were answers out there and others going through the same thing we were.
Tony – We actually felt very well supported by the medical professionals. We are lucky enough to have a great GP and Paediatrician. Unfortunately, we do not have much family in Melbourne, which has been challenging, but having the support of my sister-in- law on the other side of the city and great support from our fantastic mothers’ group has been invaluable and we will be forever grateful for.
WHAT DO YOU FEEL LIKE YOUR ROLE IN THE FAMILY IS?
Chris – My role in the family is to be as annoying as I possibly can be to my kids and I believe that I am doing a very good job at this. Besides excelling at this primary role, I am very lucky in that Erin and I share all the roles in the house besides paperwork (things would fall apart if I was put in charge of paperwork). There is no such thing as mum or dad jobs in our house.
Frank – I’m the father. I’m the caregiver. Both my wife and I have to be more active in Jacob’s care, much more so than with our other two kids.
Johan – I need to be the leader in our family and willing to make the hard decisions but also be a husband who is sensitive to my wife’s needs.
Tony – My role as a husband and father is to support and protect my family as much as possible. I try to focus on giving both of my kids as much quality time as possible. I treat both of my kids equally and try to have as much fun as possible with them and to try to mould them into the best little humans that they can be.
HAS THIS ALTERED IN ANY WAY AFTER HAVING A CHILD WITH A DISABILITY? HOW?
Johan – It has forced me to become more of a leader and mature faster. The big difference I think is that it’s made me see life in a different way. I just don’t take any time with him for granted. The phrase ‘life is short’ has a whole new meaning to us.
Tony – I find myself being over protective at times when we are out in public and I try not to notice people staring or making comments about Dylan or his friends but most people do this out of curiosity or a poor understanding of Down syndrome. I try not to take these experiences personally and at this stage Dylan doesn’t notice these things but like any father I just want the best for my children and I will do anything to protect them from being hurt or feeling uncomfortable.
Chris – Our family has grown to include the whole Just Like Jack community and I like people to be able to look at what Jack and I do and realise that there is nothing stopping them doing the same with their children.
HAS HAVING A CHILD WITH A DISABILITY CHANGED YOU AS A PERSON?
Chris – I do believe that having Jack has changed me for the better as a person and as a parent. We both realise how important it is to make sure you make the most of every second of your life.
Frank – I have had to learn to be more patient and understanding but on the flip side, I have become more stressed, worried and anxious.
Johan – Having a child with a disability really does stretch you and you have your good days and your bad days. Luckily for me I have an amazing wife and we vent in a healthy way to each other. Being a parent is fun. It’s hard but how amazing is it when your little bundle of joy just smiles at you for the first time? Or says your name? Or even tells you that he/she loves you for the first time? All of that makes all the hard bits worthwhile.
HAS HAVING A CHILD WITH A DISABILITY CHANGED YOUR RELATIONSHIPS?
Chris – Having Jack has made me realise how lucky I am to have a wife like Erin. We went through some very hard times together but came out the other side of it all with an amazingly positive attitude and the desire to show people that there is always someone worse off. It’s also highlighted how strong and supportive our extended friends and family are. We couldn’t get by without them. They love Jack and would do anything for him and us as well. We can honestly say that Jack has bought more people into our lives than the other way around. Sometimes the social setting has to be adapted but everyone is more than accepting of that.
Johan – I believe that my beautiful wife and I have become so much closer. We have had some tough times in the past but because of that we came out stronger and it’s allowed us to unite together and found I also value our parents more. Without their support, we would be struggling. It’s like the old saying: ‘it takes a village to raise a child’. Without our family, it would have been tough. Really tough. Friends have been amazing as well and really helped us to keep things as normal as possible.
Tony – My wife is an amazing person. She always puts herself last to ensure that we are all happy and well looked after. I cannot thank her enough for all that she has done for our family. My daughter Jamie is an amazing little girl who is growing up so quickly and she and Dylan get along so well together. I think her life will be enriched by having Dylan as a brother. We are lucky enough to have a very caring network of family and friends in Melbourne and interstate who we are very grateful for.
WHAT HAS BEEN THE HARDEST PART TO COPE WITH?
Frank – Just knowing that Jacob won’t have a typical upbringing and will need care for the rest of his life is very hard to deal with.
Johan – The unknown is the hardest. Knowing that all the specialists don’t even know what is going on. Not being able to plan or have any idea what the future looks like for him is tough. Really tough.
Tony – Probably my expectations of the path that I thought we would be on. No one expects this to happen to their child and I guess the normal daily challenges of parenthood that are magnified by Dylan’s diagnosis sometimes makes it challenging.
WOMAN TEND TO CHAT ABOUT OUR ISSUES OVER A COFFEE/ WINE WITH OUR GIRLFRIENDS, OR BLOG, OR BOTH. WE VERY RARELY HAVE MEN BLOGGING ABOUT THEIR LIVES AS A SPECIAL NEEDS DAD. HOW DO YOU COPE? WHAT IS YOUR OUTLET?
Chris – My real outlet is exercise and convincing myself that I am doing something good for the special needs community through what I am doing with our Just Like Jack organisation. I now chat about Jack at every opportunity – whether that’s with Erin, friends or at formal presentations. This helps me focus on the positives in our life (how we wouldn’t be where we are today) and allows me to share the message that we will all face massive challenges in our lives but to let others help you work your way through them, you don’t have to do it all yourself. The other message I like to get across is to look at the priorities in your life, if you are not happy with what you are doing then change it.
Frank – Like most men, I bottle everything up but usually just hanging out with friends or training allows me to let out my frustrations and to just take a step back from the daily grind.
Johan – I am a very easily pleased man. I love to BBQ with friends and family, enjoy a good beer with my mates and fishing, of course. I do enjoy a good chat. My clients are like family to me so we tend to talk a lot and most of the time I do talk about all things Max.
WHAT HAS SURPRISED YOU THE MOST ABOUT THIS JOURNEY?
Johan – How a community can come together and also seeing what we are truly capable of even when things get a bit tough.
Frank – The number of friends we have met along the way who are dealing with the same issues we are. I also never thought I would have the courage to be a public spokesperson for my son.
Tony – I have been amazed by how many wonderful and caring people there are out in the community who give their time and are passionate to assist those who are less fortunate than themselves.
Chris – How Jack has changed our lives for the better. Having had limited exposure to the special needs community previously I always felt pity for the individuals living with the special needs – as well as their families. I now realise how wrong I was.