Wednesday, 28 April 2010

About Me..

My daughter was born 22 years ago in a private hospital in Greece - at the time I was married to a Greek and living out there. I was 28, already had a healthy toddler, so no tests were considered necessary other than the routine.

She arrived a month premature and I didn't see her until she was ten days old. My husband was travelling and neither the hospital staff nor our families knew what to do, so what they chose to do was tell me my baby was seriously ill in an incubater and may possibly die. I was prevented from leaving my room and told it would be best if I didn't see her. Once my husband arrived three days later, I was taken home and he broke the news to me that the baby had Down's Syndrome. What can I say - I have never felt so relieved in my life! My baby wasn't going to die - also I remembered a friend at college who had a brother with Downs that she used to take to school on her walk to college with me, and he was a lovely young man.

Unfortunately, the doctor and certain close family members were not so optimistic. We were told this child would ruin our lives, would be a vegetable, would be better gone. We were offered unthinkable 'solutions' - put her straight in a children's home or euthanasia.

We didn't know what we were going to do, but were both emphatic that we would not be taking up either of those offers. My husband was coerced into visiting one of these 'homes' and returned visibly shocked after seeing something resembling one of the Rumanian orphanages. A nurse told him that not many children there lived past the age of three.

So we finally went and got our little blonde daughter from the hospital - she'd been a hefty 7 pounds at birth, not bad for a premature baby, but was now looking thin, a little grubby and had scratched herself on the face with her untrimmed nails. My heart went out to her and I was so angry that I had been denied sharing those first ten days of her life.

The first years were not easy - it is a big shock to find the child you have is not the one you were expecting and you rack your brains to try and find anything you may have done during pregnancy to cause it. The fact is, it's mostly just a fluke. You can ask 'why me?' but the question is really 'why not you?'

Your families have the same difficulties - my Greek in-laws huffed and puffed about not having anything like that on their side of the family, but also thought she may grow out of it. I couldn't persuade them otherwise! I discovered who my real friends were - people I had been really close to just faded out of the scene while others surprisingly stepped up to the mark and offered endless support and encouragement. I wish we had had more professional support - at the time Greece was not really very good at dealing with the disabled in any shape or form. In 1989, the year after my daughter was born, the mental institution on the island of Leros was exposed as mistreating 3000 patients, many of whom should never have been shut away in such a place, including people with Down's and the elderly. Needless to say, any doctor or paedicatrician I visited always seemed to recommend some institution or other. As for professional emotional support - none.

Luckily, there was a support group run by a Scottish lady for all parents of children with special needs. This was a life-saver, not only a major source of information but also someone who was willing to talk and listen at any time of day. Through this group I found someone to give us Portage and amazingly, a Greek lady who ran a pre-school but was also trained in the USA in teaching children with Down's. She took us on and my daughter attended twice a week.

I read as much as I could and took on board the idea of providing as much mental and physical stimulation as I could for my daughter. She was included in every activity and never allowed to 'vegetate'.

Sadly, my marriage did fail - my husband was very young and totally unprepared for such a major change in his life. Plus being Greek man, a less than perfect child is quite a blow and not all Greek men can come to terms with it.

I returned to the UK when my daughter was 5, knowing nothing about the English system or what was available. Again, I was very lucky in having a health visitor who bustled in and took charge, letting me know what I should be doing and how. She whisked us straight down to the local infant school and asked if they would be willing to take my daughter on - I always remember the headmistress's response, along the lines of well, we've not done it before but we'll have a go! We never looked back - my daughter had two happy years at that school with some wonderful LSA's and teachers, went from being unable to speak to learning to read and write. She went on through juniors and even three years at secondary school. Everyone who worked with her in mainstream school was marvelous and contributed so much. Obviously there were hiccups along the way, but they were few and far between.

Now, 22 years on, my daughter has attended the local technical college for two years on a full time course and still goes there twice a week for vocational courses. I am now working as an LSA to children with Down's in the very same infant school she attended all those years ago, and hopefully giving something back. Yes, having a child with Down's Syndrome changed my life irrevocably, but certainly not in the way that was predicted when she was born!

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