Ed’s Story: A Father’s Experience

When we were given the diagnosis of Global Developmental Delay, I felt both shock and relief that we had an answer. It was easier for me because I had already come to an understanding of Billy’s delays and had been attending the MyTime groups ( https://www.mytime.net.au/ ). I had expected an autism diagnosis so being told Billy had Global Developmental Delay, was a surprise. When we looked on the internet for support, there was not much information available.

We had to wait many months to be processed by the NDIS and to get Billy’s assessment. Prior to then we could not get information or any therapy support. I did discover MyTime which was a great resource.

No one helps you – no one guides you. You are on your own before you get the diagnosis. I was concerned from when he was two years old. Before then I thought it was wonderful that he did not complain when we went out in the car, very quiet and compliant. Looking back, I realised that he did not talk, he had not called me dad. We would visit my parents, and he never acknowledged them, did not hug them, did not want to stay with them even for a short time – he would scream the whole time I was gone.

I did not pick up on a lot of things and thought his development was quite normal. Billy was our second child and Sarah our eldest had no issues.  I did not notice the differences between them as Billy grew up. When I finally looked up Global Developmental Delay, I saw Billy had loads of those symptoms.

We did not go to the paediatrician with our older daughter Sarah – there was no need.  The wait times were long, and appointments were expensive. We also did not go to the Baby Health clinic because everything looked normal for her, and for Billy for the first few years.

By the time we realised, it was almost too late and then I say to myself why didn’t we do more. I feel guilty.

Billy’s language was delayed so we structured phrases so he could make a choice. “Billy, do you want a banana? Yes or No”. The modelling of the answer allowed him to better respond. His frequent and passionate tantrums have now disappeared, and it seems to be because he has a better understanding of what is being expected of him.

Now, after a year of lots of therapy and no noticeable gains, we are seeing big changes. It is as though he had to wait for his brain to catch up. All those inputs were being observed by Billy, but he was not able to apply his learnings in his daily life.

Our life as a family is so much better now the tantrums have reduced – not as stressful.

We put Emotion visuals on the fridge and have been commenting on them daily for ages. Last week for the first time he saw his sister was upset and said, “Sarah’s sad, she’s crying.” This was the first time he had shown us his understanding of an emotion and commented on it in daily life. It was amazing to hear.

Later that week Sarah was preparing to go out and she put on a jumper. Billy said “Sarah is cold.” These breakthroughs can take a long time, and it is so important to be very patient and then to celebrate the progress.

For dads – I have simple advice, and most dads probably already do it but it works. Spend time with your child, bond with your child, be sure to talk with your child a lot, cuddling them, and playing with them at their level. Therapy is useful but loving play and laughing together and being relaxed is very important.

Billy goes through phases where he shows autistic symptoms and then he grows out of them. He used to watch the washing machine for 10 minutes at a time, just watching the front loader go around and around. His hearing is very acute. He can hear a siren from miles away and say ‘Police’. It would be such a faint sound that I would not hear until a few minutes passed. These symptoms disappear as he matures.

Billy used to refuse haircuts, so we tried cutting his long, thick hair (just one snip) while he was asleep. Any more than that and he would wake up screaming. Now we ask “Billy, do you want your hair cut (one snip)? Yes or No.” Billy can then choose from this language model and will be calm as we make one cut.

Life changes and gets better. Being very, very patient and calm is important to not create stress for your child. Tell others what your child needs, such as to not say hello to him on arrival.

Ed, Billy’s dad