Our personal story begins…
Whenever we stop to think about where this all began we find it difficult to pin point exactly how life became what we know it as today. Our guess is that it started the moment Jack was born. After what was a very difficult and long pregnancy, we were both relieved and delighted to welcome our beautiful boy into the world.
Life with a newborn wasn’t what we had imagined (as most new parents would agree!) and we struggled with a baby who slept very little and didn’t feed well. Jack was ‘on the go’ right from the beginning and wanted constant attention. If we managed to find a routine that worked for a couple of weeks we were okay but then something would change and Jack would be terribly unsettled until we found a routine that worked again. Life with Jack was always very intense and unpredictable.
As Jack grew older he met his milestones, crawling, walking and speaking when he was supposed to, but he was always extremely active and ‘intense’ in his behaviours. He just didn’t stop. We would often comment that Jack either slept or ran - that there was no in between.
Socially, Jack seemed to be able to play alongside other children, but it never really occured to us that he was only interested in playing if he could be totally in control of the game and if the game was focussed on his interests. If Jack could not play his way he would (and still does) tantrum and spoil the game or become aggressive with the other children playing. This became very difficult in social situations, and it got to the point where we would (and still do) avoid social gatherings because of his behaviour.
Over time, it was Jack’s social behaviour that really caused alarm bells to ring for us. Whilst other children his age were developing social and age appropriate play skills, Jack struggled. In fact, it almost seemed like there was a missing link in this area.
When our daughter Anna was born, Jack was three years old, and it was at this point that we realised that he was different. As time went on, many of the struggles that we had faced with Jack just didn’t arise with Anna. We knew that we were parenting the same way - there was just a difference in our children.
The years of kindergarten and creche (child care) were times of anxiety and frustration for us, as these places only emphasised Jack’s behaviours and developmental delays. Creche was always a busy place, with many staff and a changing environment. The staff did their best but struggled with Jack and it seemed a session didn’t go by where (acting from anxiety) he wasn’t either physically and verbally aggressive with those around him. Our breaking point, and I guess our realisation that we could no longer simply say “he’ll grow out of it” was after a particularly ‘bad’ day at creche where Jack had an altercation with a staff member that left us feeling very let down and as a result we withdrew him from the centre.
Although Jack struggled with kindergarten, it was in fact almost a sanctuary for all of us. He was part of a small group of children, in a very calming and ’same’ environment. It was Jack’s kindergarten teacher who helped us through the decision to delay his school entry by a year - until he was socially and emotionally ready.
The withdrawal from his two days of creche coincided with a new year of kindergarten and it was at this time that we decided we needed professional help. From here it took us about 8 months of assessments with specialists to finally come to Jack’s diagnosis of an Autistic Spectrum Disorder.
This in itself was a journey of courage. ‘Tests’ became a part of our lives - a myriad of blood and urine tests, a brain map, attention tests, psychological tests, intelligence testing, and neurotherapy sessions (more about this in a later post). Jack had his normal ups and downs over this time, but every test seemed to add to his anxiety and general feeling of being invaded. Over the course of these few months we often felt hung out to dry with emotional exhaustion, particularly following the parent interviews with each specialist, continually recounting Jack’s history and the story of his life. The waiting for each result brought with it anxiety. And the travel … we live in a rural area, three hours away from the closest major city (and of course specialists). We certainly covered some distance over this time.
What began with an assessment for ADHD (this was the first condition that was suspected due to his hyperactive behaviours) finally came to an end with a psychological assessment of ASD. A relief certainly, at least now we had something to work with.
Our journey continues from here…