I must admit I've been delaying writing up this part of our life, simply because I know it will stir up memories of difficult times. Not long after we discovered our child was disabled someone told us that the process we were going through was very similar to grieving. I now know this is only partly true, as coping with disability is something which directly impacts on nearly every moment of your subsequent life. Its not something you can grieve about and get over.

One thing that started to become more obvious was that integrating with "mainstream" children was becoming more difficult. Our friends' children were all now running around and needed little supervision or input. Trips to see some friends became more and more difficult for Paula, since she spent all her time looking after our son and the other children by association, so she rarely found time to chat. That's not to say that some of our friends with mainstream children have not been an absolute rock for us, its just that we've become much more selective with our friends.

As well as settling into a routine of regular appointments at the Child Development Centre, there were a number of visits to hospital clinics in the hope that we might find out something about the diagnosis. We had a vague hope that if we discovered the cause, there might be a miracle cure available. Perhaps something as simple as a dietary change would be all that's required. We also started to avidly research all the related topics on the web, looking for a link between the various symptoms we knew about. Sometimes we'd find something that sounded exactly the same, then we'd panic about the prognosis that came with this discovery, only to find out that it couldn't possibly be the cause. I remember at one point being struck by how closely our son's symptoms matched those of Angelman's Syndrome, but we now know this is not the cause. I guess the internet is a powerful tool but also a dangerous one as it can be very misleading.

The subsequent visits to the genetecists and neurologists at hospital at least discounted a large number of disorders - I had no idea there were so many described genetic disabilities! Blood samples were taken which also discounted chromosomal anomalies, Fragile X and a few other possibilities. In parallel with this we were busy working with physio, play and speech therapists to help our son's delayed development. Trying to teach a heavy 2 year old to "4 point crawl" (as opposed to commando crawl) by supporting them with a towel under their tummy is a good way to ruin your back! Life was so hectic, I was using nearly all my annual leave to attend as many appointments as I could. But I couldn't face not being part of all this, not being with my child at the blood tests or with my wife at the many difficult meetings.