A Parents Perspective

Our son Bryce was in his early teens when the first signs of something happening appeared. He became forgetful. If sent to do a task, he would return having not done it and having forgotten what it was he had been sent to do.Visits to doctors followed and Epilepsy was the diagnosis.  This came as a bit of a shock to us as we knew very little about it and always thought that was when people threw “fits”. We now know there are many types and they affect people in different ways. Over about the last 20 yrs we have been through many highs and lows.  Bryce’s schooling took a tumble as his memory recall diminished. During his middle years at secondary school if he had a bad day he could have as many as a dozen “turns” in a day and then would be like a zombie for the next day which meant missing school. Bryce had all the scans/tests available and went through video monitoring to see if surgery was possible but unfortunately all results were inconclusive. Eventually he was classed as having Complex Partial and despite trying many drugs over the years he has never been completely controlled. It his late teens Bryce went through a few dark patches that were concerning but thankfully he now realizes that there are many people with difficult things to deal with in life and he is very happy. He has a wonderful understanding wife and is currently a Stay at Home Dad with 2 lovely children. He has the full support of friends and family and we are all very proud of him. The worst thing we have had to deal with over the years is the prejudice surrounding the word “EPILEPSY” . These prejudices are created from ignorance, the lack of understanding what Epilepsy is about. While most of Bryce’s teachers were understanding there was one in particular who made life difficult for him, saying he was just lazy and daydreaming all the time.  She failed to acknowledge his Epilepsy. A case manager, at an organization set up to help people with disabilities/health issues find work, rang us in the middle of an interview with Bryce to say that he was an arrogant little so-and-so who was taking no notice of anything he was saying and was falling asleep, also a failure to recognize his Epilepsy. Employment has been another issue we have had to deal with. Bryce has had a few employers who have been very understanding,but many are scared off and a couple used to complain about him having “turns” in their work time.  All prospective employers were made fully aware of Bryce’s epilepsy prior to employment. On occasions where we tried to get Bryce financial support when he was out of work, social services were of no help either. Bryce did not fit into their “black or white” legislation.  He was a grey area.  He wanted to work, was capable of working  98% of the time, but nobody would employ him.  This was all too hard for them to deal with. All the “bad” issues we have had to deal with have been due to ignorance of what Epilepsy means.  More education is needed.  Bryce has often said if they could see something physically wrong people would be more understanding. I think the most appalling thing for me several years ago was when I was told by a local Epilepsy Group about a stall they had at a local market that they didn’t put the Epilepsy Banner up because it scared people away.  If those who are supposed to be educating the public have this attitude, how will the message ever get across to the public what Epilepsy is really about ? Bryce is very excited to now be associated with The New Zealand Epilepsy Foundation. Epilepsy is something that many people live with everyday.

Vicky Rae  – Bryce’s Mother

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