Celebrate the little steps!

3. The pain and disappointment never leave you but you learn to take pleasure in the small achievements: we were once told that we needed ‘bereavement counselling, to mourn the child that we should have had’ and at the time, I scoffed at this ridiculous notion. However, I now realise that it might have been helpful. We both love Joshua dearly and would not be without him, but there is no doubt that he has changed our lives dramatically and his problems impact on every aspect of our lives.
When Joshua was diagnosed with brain damage, we were warned that he might never walk, talk, see or hear. Initially he achieved all of these milestones, albeit later than his peers, and so the optimistic side of my personality liked to think that it had all been a mistake and he was hardly going to be affected in any real way. It was when Joshua went to Nursery School that I suddenly realised that he was different to his peers – they didn’t bounce up and down all the time and they could sit still and concentrate for longer than he could. The Head teacher recognised it too and she pulled me aside one day, pretty early on, to tell me that Joshua needed to be ‘statemented’ ready for his transfer to Primary school. I was horrified as this was not a phrase that I was aware of and in my mind, she meant that Joshua should be ‘sectioned’! But we resolved that confusion and she guided us kindly and professionally through the process, so that he was allocated a full time teaching assistant to support him at mainstream school.

Joshua managed mainstream infant school well and he was a popular and involved member of the class. However, as the class got older, the gap widened considerably. While his peers were studying history and maths, Joshua was in a small room playing with baby toys with his TA. He began to spend more and more time in that side room until it became clear that this was not ‘inclusion’ and he needed to move to a Special School, as they would be better equipped to deal with Joshua.

Unfortunately, epilepsy, or its medication, has taken away some of Joshua’s skills that he painstakingly achieved. As a 3 or 4 year old, Joshua was using sentences and understood what he was saying: faced with a broken toy, he would pass it to his dad saying” It needs batteries..Daddy do it”. But while weaning him off one anti epileptic drug and onto another, Joshua had an intense period of epileptic seizures and as a result, he has lost virtually all of his language and certainly his ability to form sentences. Now that he is a teenager, I get immense pleasure when he booms out his few words: ‘wow’,’mummy’, ‘go’ and ‘tea’ but less pleasure when he shouts out ‘poo’ during a church carol service or ‘no’ at 3am. I love to hear his deep voice and constantly ask him questions to elicit a response and sing songs where he completes the last word in a line.
Joshua had brain surgery last year and since then his mobility has deteriorated but he has mastered a skill that previously eluded him: he now drinks casually from a glass. When I praise him or video his drinking, he simply looks at me in amazement as if to say ‘what’s the fuss mum?’ we do however still need to work on his awareness of what is a safe surface to place the half-finished glass on and the settee or a dog’s back, do not qualify!

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