My Daughter

 My daughter was born on Wednesday February the nineteenth, 1975.  Apart from being two weeks premature and being born in the same labour ward and within five minutes of the daughter of a close friend, there was nothing unusual about the birth.  There was no indication that she was going to be the centre of our lives and that thirty years later she was going to influence our attitudes, our political loyalties and even how I earn my living.  No, at that time the only unusual thing about her was her Mohican hair style, consisting of a strip of hair standing up along the middle of her head with otherwise total baldness.

But whether we liked it or not she was going to have a huge influence on the family – Mo, our other two children and me.  She was also going to influence how we judged the State’s attitude to disability and, by extension, to the many areas of need and deprivation which are virtually ignored by the slightly limping but still sleek Celtic Tiger.

However, back to the beginning!  She was a baby who could never feed well.  At first we thought she had caught a cold in the hospital and this made her choke on her bottle.  We tried feeding her slowly and found that it worked to some extent but took huge amounts of time at every feeding session.  It never dawned on us that it was because she simply could not get her head around the idea of sucking and swallowing at the same time.  We approached many doctors who were always sympathetic but gave us little help otherwise.  Finally, when she was six months old, for the first time we decided to take a stand and insist that we wanted more than sympathy.  We took her to our family doctor and demanded to see a specialist.  Our still sympathetic and good humoured doctor only too willingly sent us to a specialist who checked her out, prescribed stuff which certainly helped the eating issues and told us nothing else except to come back when she was a year old.

So, we waited until she was a year old.  During that time (in fact from when she was two months old until she was twenty months old) she woke most nights for anything up to four hours.  Otherwise, apart from a tendency to live in a world of her own and a reluctance to do much moving around, nothing really concerned us.

Then we brought her back to the specialist.  He took her into Temple Street Hospital for three days.  On the third day we were invited to his office to hear the verdict.  He began by saying “it’s as we suspected”.  I found this very confusing because whoever was included in the “we” it wasn’t Mo or me.  He continued talking as if we understood what he was saying.  Eventually, I began to put two and two together and, interrupting him, asked if she was retarded.  You must remember that this was twenty-nine years ago and I had not kept up-to-date with political correctness in the area.  However, this failing on my part was soon to be corrected.  He instantly changed his discourse to a lecture on the fact that we didn’t use such terms those days and that it was called mental handicap.  I think this was the moment when I finally and irrevocably decided that political correctness for political correctness’ sake was a ludicrous concept and definitely not for me. 

However, while my subconscious undoubtedly came to that conclusion my conscious had more immediate issues to deal with.  For instance, how could I handle this new situation, how was Mo going to handle it and what was the future going to be like?  Or maybe none of that struck me at the time.  Maybe these were issues which arose later and have somehow become jumbled in my mind as being part of my initial reaction.  What I’m sure I didn’t do was what I should have done.  This was to give the specialist a lecture on how to deal with people at such a sensitive time in their lives.  This is a feeling I’ve had many times since and I still haven’t managed to take the bull by the horns (or the service provider by the scruff of the neck).   However, in the long run the specialist turned out to be a kindly, if eccentric man, although we were always a little surprised by the fact that a man in his profession would have had such a huge dislike of crying babies and would constantly order his nurses to quieten the children in his waiting room.

However, the news given to us that day began what would essentially be a lifetime of being a lesser citizen, a charity case.  On many occasions we’ve had to face dreadful patronising, insensitive arrogance from those who were employed to provide a service for us and were well paid for doing it.  There was the time when I faced a doctor across my daughter’s bed in a hospital intensive care unit and was told almost casually that she would probably die.  She didn’t!

There was also the occasion when we tried to point out that the school we were being offered for her was outside our area and that the local one would be a better idea for all of us, only to be told that we had a choice between that school or no school at all.

There was the constant fear that she would be expelled from the service she was in.  Looking back we wonder why no one thought to tell us that expulsion was not an option.

There were the hours we spent while she gave us a master class in challenging behaviour, that is, having tantrums.  Coming from a family with very little athletic ability we were amazed (and embarrassed) by her talent at regularly making contact with the bus driver’s head when she sent her shoes flying around the bus.  There were the many moments of worry, frustration and anger when we tried to handle someone who was often too hot too handle.

Oh, and by the way, there were the professionals working in her units who were very much aware that to help her they had to respect us and to work with us for her benefit.  Despite the bad experiences we’ve had it was these people who proved to us that the idea of respect for those we serve has not died.  It is especially because of these people that today, at the age of thirty-one, she’s really a very nice person. 
Seamus (March 2006)