Facing the prospect that Uisneach could have a disability

Things were going great. Little Uisneach would allow us a full nights sleep from an early age – with only the odd interruption due to his very loud snoring. He would go to bed at 7pm and wouldn't budge again until 7am. He was bright and responsive during the day and in particular he would love his bath-time in the evening.

Apart from a recurring eye infection in the first couple of months, while his tear ducts were forming, and a chest infection which required a doctors visit he was generally in good health.

However, it was during one of his routine visits to the local health centre when concerns were first raised about his development. On the chart for growth it was noted that Uisneach was coming in under the last percentile across all the areas – weight, height etc. It was decided that further monitoring was needed and we were brought back for weekly weight-in's. It quickly became evident that Uisneach stopped putting on weight although he was consuming the right amount of food for a child his age.

Around the same time we had been given referral letter from our GP to attend a consultant neurologist in the National Children's Hospital in Crumlin because of concerns we had about the shape of Uisneach's head. His head was quite flat at the back.

Back in the local health centre we met with the pediatrician during his eight-month developmental check-up. Along with noting his failure to put on any significant weight she also expressed concern that Uisneach hadn't reached the developmental milestones he should have – i.e. sitting up unaided, moving about on the ground - and recommended that we attend a physiotherapist.

Meanwhile we received confirmation of an appointment date with the consultant neurologist in Crumlin Childrens Hospital for a couple of months down the line. At least we were in the system.

The physiotherapist completed a number of sessions with Uisneach and came to the conclusion that there was more to his condition than just a delay in reaching development milestones. This was the first indication we got that we were dealing with something more serious. It was the first time that we were faced with the prospect that Uisneach could have a disability – just a couple of weeks out from his first birthday.

It was hard to comprehend, because the little guy, to us, and to all those around him, seemed perfectly 'normal'. He was sitting up unaided at this stage. Eating semi-solid food. Had a great appetite. Was engaging with everybody and anybody. Was babbling away. Was happy and cheerful most of the time. But he wasn't crawling. Wasn't making any effort to stand or walk.

But as everybody kept saying to us – “ah sure they're all different...it will come to him in his own time...I wouldn't worry about that...I know a little lad who didn't walk until he was two.”

Welcome reassuring words we wanted so much to be true. But the reality of the situation began to sink in with each passing day. For his Dad – the eternal optimist - it took a little longer than his Mam.