Being a Dad to twins is the most rewarding and most challenging job in the world. I knew that as a team my wife and I would be just fine, after all there is two of them and two of us, how hard could it be? The truth is it was about to get real hard!
I admit prior to diagnosis, I had a preconceived idea of what I thought autism was. I thought it was having a strange kid that was really good with computer games and something that could be “fixed”. Thankfully (and rightfully so), I was hit hard with a reality check when I read the formal diagnosis for both of the boys.
My wife had her suspicions very early on but I downplayed those thoughts by telling myself that they are just babies, or that twins develop a little slower and of course the denial.
When we received the diagnosis, my wife hit the ground running! With her medical background I assumed the position of “she knows what to do”. There was a part of me hoping that she would meet with the specialists, paediatricians, psychologists etc and explain to me that there was a simple fix.
I quickly changed my tune though because for the boys I knew that with a diagnosis we now knew why they were behind in their development and we then knew where to turn for help.
Pre and Post diagnosis the one thing that has been consistent is the problems that we as a family have in social settings. Whenever we attend a birthday party or even a simple trip to the park or shopping centre we are faced with the challenges of meltdowns because of sensory related issues, the need to run off (often in opposite directions) or the OCD related behaviour where if things were not done in a particular way then chaos was guaranteed to follow. You are juggling autistic behaviours mixed with general young child behaviour and it can be very difficult to pick and choose when you discipline them because I don’t want to tell them off for being autistic.
Now the real fun begins when you can feel the judgement from the outside world. The perception that you are a bad parent who can’t control your kids. Every now and then you will make eye contact with someone and you sense that they feel sorry for you. You can also sense relief in their eyes that they may have it easier than you do. Of course the only thing to me that matters is that throughout these experiences that the boys are safe.
When we got a placement for the boys in the First Steps program at Autism Association of WA (AAWA) we felt very excited because we would find out what techniques would be used in order to help the boys. We learned so much about visuals, routine, reward charts, first/then methods and much more. The therapy was intensive yet the results have been amazing. The progress that they have both made from 12 months of the program have literally been life changing. The milestones that they have reached may be tiny for neurotypical families but they are like gold medals to our family because in the world of autism any milestone is not guaranteed.
The therapists and play leaders that worked with the boys knew before we did what they needed and how to get there. They also provided us with visuals for us to use at home. They even taught them how to sit at a table with their peers, open their own lunch boxes and eat their lunch. It was all these little things that made a huge difference.
We had a difficult time telling our friends and family about the diagnosis. We knew that we had a lot of love but not necessarily the understanding. Still to this day I am sure there are people close to us that still struggle with the diagnosis but everyone has their own way of dealing with it. My way of dealing with it is simply that these are the cards I was dealt LET’S PLAY!
On the surface the boys present well (although I am still not sure what Autism LOOKS like). On the surface we as a family can seem like every other family. The truth is we have had to withdraw from many friends and family social events because it’s just too hard. I find myself having conversations with people without looking them in the eye because I have to watch my kids to make sure they don’t run away. Is the perception that I am a helicopter Dad? Sure! Is it necessary? Absolutely!
My family and friends are very empathetic when it comes to Autism which means a lot obviously, but there is still a big void in that I need to talk to someone who is living the 24/7 life with autism that I am living. I need to know what’s normal and what’s not, I need to know that I am not alone in this journey.
I had an opportunity to attend several sessions of the MyTime group in Joondalup (held on Monday mornings) and at the sessions that I attended I quickly realised I was the only guy there. I enjoyed listening to the topics being covered as it was very relevant and it was nice to be around other people who were autism parents. I started to think about the Dad’s in this situation, how are they coping with their journey? In fact, where are they? So I started up the Perth Autism Dad’s Support Facebook Group.
For a while I had 30 members (currently 105) in there and loved the interaction but what really helped turn the corner was when AAWA found out about the group and approached me about facilitating a Dad’s only MyTime group at Joondalup on Saturday mornings. This is exactly what was needed, a safe space for Dad’s (and their kids) to come along and hang out for a couple of hours and bond over this journey that we are on. It’s something that I am so passionate and proud of and for the ladies, it gives them a break from their partner and little ones too!
My advice to Dad’s who are going through the diagnosis stage is fairly simple. Early intervention is critical, get on board ASAP, be prepared to walk an unknown path but also understand that a few of us Dad’s have walked that same path before and are here to help. You are NOT alone!
If you would like to learn more about how our Early Childhood services can help you, you can contact us on 6380 5500, email us via FirstSteps@autism.org.au or visit our Early Childhood services page here