screaming for a voice

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I am the older sister of Megan. She is now 51yrs old and it has been a very long and hard journey for her. Meg was in her 20s before her diagnosis was confirmed in Sydney. Due to a family breakdown and the medical profession's ignorance of her condition at the time, Meg spent many years institutionalised -- from 6 to 16 yrs. She has lived since in group homes in community care. Some good, some not so good - but all were better than the institutions. She has lived with me for varying periods of time since she was 16 but Meg needs more than the input of 1 person for the long haul. The road to where she is at the present time has taken many twists and turns but she still remains her generally happy, bouyant self - one of the gifts of Angelmans Syndrome. Meg has no speech but understands language well. She uses around a half dozen Makaton signs. She has known more but she doesn't ooze motivation and more often than not the staff in care don't understand them anyway.. Her attention span is often limited and she gets frustrated if things aren't explained early enough or well enough to give her time to prepare for change. This can trigger emotional issues. She also has constant epileptic activity going on and suffers frequent headaches from this plus from the medication that still can't adequately control it all. It can be difficult for others to know when her reflux flares up - as it does often, due to swallow and mastication difficulties - and people that don't know and understand are not then equipped with the knowledge to administer appropriate medication to relieve this. Meg suffers a lot due to her being unable to communicate these issues and receive appropriate help - sometimes even to carers who have known her a long time. Meg gained continence though a 'pad and bell' programme I helped her with when she lived with me at age 16yrs. This is quite an achievement for someone with Angelmans Syndrome I believe. This did not last when she went into community care though. We revisited the 'pad and bell' when she lived with me for another prolonged period at age 45. When she eventually went back into comunity care I monitored this to enure continuity of her achievement and she remains continent today. This has shown to be of great advantage for Meg in terms of social acceptance plus self worth I feel. As her guardian I will continue to oversee Meg's care, health and welfare for as long as I am able. I worry who will pick up the banner after I'm gone - there is a considerable age gap between us. She is a trouper and a real survivor. Her journey has been as hard as it has been painful but she keeps forging on and just loving everybody. She has a sparkle in those blue, blue eyes and a smile that wins most people over.