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Wednesday, 26 January 2011

Some early years experiences as a disabled child in the mainstream world and the way her family coped.

On the back of my health problems, life continued as normally as possible. My brother and I went to school, my mum and dad went to work. My school life started at the age of 2 and a half when I started to go to nursery which was part of a special needs school where 5-18 year olds attended.

I started as most children do, going once or twice a week for a few hours here and there. I then progressed through the years and stayed at the school until I was 9 yrs old. During my time at the school, my parents were always keen to get me in mainstream education, although they were cautious for the first few years of my life as they were unsure of my cognitive ability and whether I was going to have a learning difficulty making it difficult for me to learn due to the complications of my shunt.  I will discuss my school experiences in more detail in a future post.

As the years progressed and my health became more stable, I began to lead a more 'normal' life. I was finally allowed to go on holiday with my family to Majorca which was obviously quite an exciting time for the whole of the family. This time allowed us to be like a normal family, having fun with my brother, mum and dad.

As mentioned above at the beginning of my post, life carried on as normal as possible for the rest of my family as well. My brother who is 3 and a half years older than me continued to join in at school and do normal boy activities like cubs and scouts. He had his own health problems as a child which made life quite challenging for my parents, especially when I was in one hospital and my brother was in another. Thankfully as a family we got through these times and it is probably what has made us stronger as a result.

While all this was going on, my mum and dad also went to work, dad full time as a pig farmer and then went back to building while my mum worked in an office part time. The company that my mum worked for was quite understanding of my mum's needs and would give her time off at short notice, allowing her flexible working conditions. This was needed as my mum was the main person involved in the regular hospital visits that I had to attend. 

This and previous posts written are only a brief outline of some aspects of my life and things that I  have experienced, in future posts I will speak about these in more detail as well as new aspects of my life.

Tuesday, 25 January 2011

life for disabled child between 0-5yrs olds in the mainstream world

After surviving the 3 weeks that my parents were told I wouldn't, my parents began to realise they had a fighter for a daughter. This brought them strength to carry on and do their best by me. The first 5 years of my life were challenging for the whole family not just for me.

My shunt being fitted was only the beginning, with this came problems that were going to affect my life in a massive way especially with regards to my childhood. In the first 5 years of my life I was in and out of hospital regularly due to problems with my shunt. On more than one occasion I was given life saving treatment at Great Ormond Street Hospital. I owe my life to the doctors and nurses who regularly looked after me through these years.

Many of my memories of this time, are through what I have been told by family and as I get older I am now able to appreciate the seriousness of my health problems as a child. There was more than once that my parents thought that they were going to lose me and I required life saving treatment, not least on Christmas Eve of my 5th year. Within this year I was in and out of hospital many times and although it is awful to have to go to hospital, Great Ormond Street Hospital always tried to make it easier for the patients and their families. In the summer of this year I was in hospital again and the patients got the opportunity to be involved in the filming of the Sooty Show Christmas Special. Unfortunately I got the opportunity to watch the show on TV while in the hospital again.

The time in the hospital was not the only problem experienced throughout this time, each time I came out of hospital I 'became a different child' as my mum described it. This meant that I regularly had to re-learn skills that children of my age took for granted like being able to feed myself. 

My visits to hospital became less frequent after a while and I was given the opportunity to grow and begin to experience life as a child. In future instalments I will write about my relationships with different family members, school experiences, and many adult experiences. Although the rest of my life has continued to provide me with challenges as I became older I began to experience more positive moments which I will look forward to sharing with you.

Monday, 24 January 2011

The first few days as a disabled person in a mainstream world

I was born in 1981 into a world of uncertainty and of course a conservative government. Through the posts that follow I will talk about what it is like to grow up with a disability and the issues that I have had to deal with throughout my life. So how did my life start? I was my mothers second child and so she thought she knew what to expect. During her pregnancy she was sure there was something not quite right with her baby and as such she regularly told the doctors this. As was the case then my mum was told not to be so silly and that there was nothing wrong with her baby. This still happens now but with technology as it is now, this happens less frequently.

When I was born, my mum was proved right, as soon as I was born I was taken and put in an incubator. My mum at this point realised that she had been right all along and that I had Spina Bifida. My chances of survival were not good, only being given a few weeks to live. 30 years ago it was common place to put babies into care without a second thought. Within hours of me being born my parents were asked if they wanted me to be put up for adoption. As you can imagine, my parents had a lot to deal with at this time but one thing they did know was that they would never do that to one of their children. So their answer was obviously no, thankfully for me.

So . . . I survived longer than a couple of weeks, at which point it was decided that I should be given the operation to close the hole in my back, to prevent infection and limit any other problems that this may cause. After the operation (as a result of waiting) I then developed Hydrocephalus which meant that are shunt was inserted to drain fluid from the brain. (future blogs will include the problems this caused in my childhood). My parents were then told the likelihood was that due to my health problems I would not live past 5 years old, again I survived past this age and I am now here to tell the tale. This is a simplified version of my first few years which I will talk about in more detail later so please come back and follow my journey that I have made.