Muddling through

When Joshua was born, we were told to take him home and to treat him like a normal baby, despite his diagnosis of brain damage. The outlook was bleak but nobody really knew what he would or could achieve. So that was what we did and we were delighted when he passed his milestones as he proved that he could indeed walk, see and hear. It was easy to convince ourselves that he was going to defy the doctors and that he was going to be delayed, but would eventually catch up with his peers.

But at 4 years old, his epilepsy took hold and we had to start the trial and error process with medication. His epilepsy seemed to slow his progress down and became the biggest complication that he had to cope with. We had been warned by the GP that with his brain damage, epilepsy was very likely. But it was just a word then, nothing either of us had any experience of, and so we did not appreciate what it might entail for Joshua and the impact that it would have on his development.

It is odd how you can be thrown into the world of disability in this way, quite a baptism of fire.I have always held the view that as parents receiving a diagnosis like Joshua’s on day 4 of his life, while we were still in the Special Care Baby Unit that we should have been allocated a social worker at that point, automatically. One should have appeared and introduced themselves to us and left their contact details for when we were ready to ask all our many questions. As it was we were years down the line before we sought out a social worker and he began to open doors for us, that had previously been closed. If one could not appear so quicky, at least we could have been given an information pack with helpful details and telephone numbers in it. There has to be a better system to help to prevent new parents falling through the gaps in the system, at what is a bewildering time in any new parents life. We were very lucky to have a brilliant health visitor who picked up the slack and did more than her job required, but not everybody will be as fortunate as us.

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