Kelly's Story

Being the mother of a disabled child is something that has changed my life totally, but has also brought unexpected rewards and insights.  It has changed my whole outlook on life and set me apart from my friends and even my family, that’s how deeply it has affected me.  On the other hand, because we are so close and spend so much time together, I love my son more than I ever would have thought possible.  I believe that if he had not been born with cerebral palsy, we would not have this special bond, and would not be as close.

Kieron is now 11 and was born in 1995 in Lisburn.   He had cerebral palsy from birth, but I don’t really want to go into all the details of how he got it and what happened just at the moment.  I didn’t know that he had it though, not until he was 17 months old, so I had all that time to bring him up, unaware of the problems that lay ahead.  He was always a hard child to look after, but at the time I put it down to being a first time mum and being rubbish at it.  He would cry and cry, and slept badly from the word go.  I thought he had colic and so I fed him full of Calpol and all the potions I could get my hands on but nothing worked.  He hated my leaving him; I could barely put him down for a second.  I resolved never to have any more kids! 

My friends babies were not like Kieron at all, I noticed that right from the start.  As he got older, he didn’t do any of the things that other babies did.  He couldn’t hold his bottle, or finger feed or pick things up.  When he reached out for things his arm would shake and we usually had to guide his arm.  When he came to the age to sit up, he didn’t do it either.  His dad and I spent hours teaching him how to do it and eventually, at 11 months, he did.  Then when it was time to crawl of course that didn’t happen.  Again we taught him how to, moving his hands and knees until he did it himself.  He didn’t start speaking either.  I felt a bit inferior when other babies were walking and running and Kieron was still sitting on the floor.  I think all mothers feel like that when you see other children that are “ahead” of your own, and the fact the mothers rattle on about their kids achievements didn’t help.  Then again if Kieron had started running at 10 months I’d want the world to know too!

His first birthday came and went and he still hadn’t made any real progress.  People started to comment on it.  One tactless relative even said “there’s something not right with that child”.  I refused to listen, as I am naturally very stubborn, and I told them that he was just a late starter.  By this time I was separated from Kieron’s dad and making a go of it on my own.   We moved from Crumlin where we had been living for the past 18 months to Lisburn to be nearer my family.  Even though I refused to listen to people, I did bring him to my GP when he was about 15 months old because I was wondering why he showed no signs of walking.  She said not to worry, if he still wasn’t walking at 18 months then she would look into it.

Looking back, I don’t think the GP was doing her job properly.  Knowing that the birth was difficult and he suffered lack of oxygen during it, plus a 10 day stay in the ICU, I don’t understand why her alarm bells didn’t ring.  I can only imagine that it was because I was just another face to her, and she maybe hadn’t read Kieron’s notes properly.

It was the health visitor at his 18 month check up that finally noticed something was wrong.  I should have known too, but Kieron was my first child and I think I was in denial, or maybe I just did not have a clue.  The health visitor did some little tests on Kieron and then said she would refer him to a clinic for further examination.  I was a bit worried about it, but I thought that mentally he was fine, he was alert and happy.  I didn’t even think about physical disabilities.

At the clinic we spent the best part of a day seeing various professionals, and Kieron did his best for them.  At the end of the day we were brought into see a consultant paediatrician and she told us straight away the he had cerebral palsy.  I had no idea what it was, and I was too shocked to ask.  It was like being punched in the head.  I immediately thought that it would affect his growth, and I asked if he would grow as normal.  I am sure the doctors are used to being asked stupid questions like that.  The meeting with the consultant was pretty short, but I was given an appointment for the next week to follow up and begin treatment.  On the way out, Kieron’s dad and I both saw a leaflet about cerebral palsy with a normal looking, happy child on the front of it.  It confused me even more, as I knew the news was serious but why was this child looking like there was nothing wrong with him?

I was so shocked, I went to my parent’s house but I can’t remember how I got there.   My mum said she knew, as she had seen a program about cerebral palsy and she thought that Kieron was like some of the children on it.  She had her suspicions anyway, she had raised 5 children and knew that he was different but she chose not to say anything to me.  I am really grateful to her for this because I know I would have resented her for it.  I don’t think anything would have been gained from knowing any sooner, and maybe I wouldn’t have been ready to accept it.  I had found the first 18 months of being a mum very difficult as it was.  I finished university in England in June 1994 ready to travel the world, then I found out I was pregnant and before I knew it I was living in a tiny village in Co Antrim.  I wasn’t sure about my relationship with the father, I had no friends and no money, then we split up when Kieron was only 13 months old.  I had enough to cope with before then.  I was getting used to being a single parent when I found out so maybe the timing was right.

At home that night I was in shock.  My brother Paul was living with us at the time and he went out to see his girlfriend.  He came home early because he was worried about me, and was still sitting in the same spot he left me in.  I couldn’t wait to get Kieron to bed so I could sit and smoke and try and make sense of it all.  We looked in the dictionary for a definition of cerebral palsy but there wasn’t one.  I still didn’t really know what it was he had, and when I tried to remember what the doctor had said I couldn’t remember any of it.  Even if she had explained it ten times I don’t think I would have heard it. 

The next day I got up and got Kieron ready and we went to the health centre.  I was determined to get a leaflet or something that would explain what he had.  The receptionist called the health visitor and they came down and got me.  I ended up talking to the nice lady who had come to my house a few weeks before and referred Kieron to the clinic.  She was great; her nephew had cerebral palsy so she explained everything to me.  She told me it was brain damage and that no two children were the same, as it could affect you in many different ways.  I asked her if he would be taken off me, but she assured me that that rarely happened anymore.  Her own nephew had never sat up on his own and was much worse than Kieron, but the loving way in which she talked about him and his personality really helped me.  That’s what I needed to hear.

I didn’t tell anyone what had happened, except my family and a few friends, and I asked them to keep it to themselves.  I wasn’t ashamed but I wasn’t ready to tell anyone yet as I had to learn to deal with it myself.  It didn’t hit me really until 3 days, when I had a mini breakdown in my kitchen.  But once that was over I was able to start to deal with it all.

Life went on.   I had to get up and get Kieron dressed and fed and all the normal stuff that you have to do, but inside I felt like nothing would ever be right again, and I was unhappy for years.  I used to go to my mums or to a friends or go to work and I would be dying to cry and tell someone how I felt but I never could.  That’s just me though, that’s how I deal with things.  I don’t like to put my problems on other people, and I didn’t really think anyone could help me.  We went back to the clinic a week later and began what would be an exhausting series of treatment that would carry on until Kieron started school.  We had speech, physiotherapy and occupational therapy, each 3 times a week.  And also we had to see the consultant once a month.  I had no time for much else except the therapy.  Lucky enough I was only working a few hours a week and had no other kids.  I can’t imagine how hard it is if you are trying to work or have other commitments.

I really enjoyed the visits to the centre as I was able to find out things about Kieron’s condition over time, although we never got to meet other parents or children, which would have been great.  The sessions were fun and Kieron really made progress.  Some days were better than others, but generally he was well behaved and worked well.  I did the exercises every day at home too, it sort of took over my life.  Then he was diagnosed with epilepsy when he was about 2 ½ after he started having partial seizures, and he was put on medicine.  That was another setback, something else to get used to.

I slowly started telling people when I felt a bit braver, a few people said stupid things but then people often do.  I am sure that I have done that at some time in my life.  I can’t say that I had accepted it at this stage, but it never changed the way I felt about Kieron.  I never regretted having him or resented him.   As far as I was concerned he was my little boy and I was going to do my best for him.  That’s the way I still feel today.

He started Fleming Fulton, a special school in Belfast, when he was 3, and did a 2 year nursery program there before beginning in primary 1.  It never entered my head to send him to a mainstream school and it was never mentioned by anyone else.  I still think I made the right decision.  I love the school, but I did not find it easy to go there until at least primary 2.  I probably came across as really unfriendly and rude to everyone, but I couldn’t handle it.  There is no escaping the condition when it’s being talked about all the time.  I would often cry in the car on the way home.  I cried a lot it seems!

I finally turned a corner when Kieron was around 6, I think I just accepted it and was no longer afraid of what people would say.  I didn’t mind the wheelchair, the walker, the splints, I just thought, this is the way our life is going to be and that’s that.  After this point everything became easier.  Of course there have been times when I have got down about everything, but I was no longer struggling to get through the day.

There have been some really tough times along the way.  We went for the MRI about 4 years ago and found that there were 2 separate brain injuries, and he has 2 different types of CP.  At one stage he was having 10-15 seizures a day, mostly during the night and in the morning.  Then the medication was changed and they all but stopped.  Now he only has a few a year, though they are big ones.  Then came the surgery when he was 8, he had new bones put into his ankles and his tendons lengthened at the back of his legs.  It was a long process; it took 6 months for him to heal completely.  I have lost count of the times we have spent in hospital, and I have been really worried about him at times, but luckily enough the major health problems have lessened as he gets older.

Along with hardships there have also been some really great times.  Before the surgery he couldn’t walk or stand at all, but now he can take steps and stand for over an hour.  I was so proud when I saw him walk for the first time.  All in all it was a good move to have it done.  We are great music lovers in our house, and so he stands in the living room with his guitar on, the microphone plugged into the speaker and sings along to a DVD or CD for ages.  In fact if he had to stand that long in school he wouldn’t be able to do it, but because he is so busy being a rock star at home he just does it without noticing.  Thanks to the hard work of the speech therapists in school he can talk quite well and uses Makaton along with signs to communicate.  He didn’t say a word until he was 4, his first word was cheese, and up until about 18 months ago he could only really communicate with people who knew him well.  Now his speech is much clearer.

I know that things will not be easy for Kieron; I think he will need assistance for a good while, if not forever, and I want to be there to give it to him.  I tried to work and applied for job after job, hoping that I could look after him and work at the same time, but I came to the conclusion that I have a full time job already.  I looked into childcare and it didn’t seem to fit in with his needs.  There are so many appointments to keep and he misses a good deal of time through ill health that I realised I wouldn’t be able to hold down a job. So now I do a little bit of teaching when Kieron is at school and the rest of the time I am here with him.  He has real problems with school work; I suppose he has a learning difficulty, so we do extra work at home.  I don’t think that he would do as well if I went back to work just yet.  I may be able to do more when he is older.  I have learnt that you cannot make plans to far into the future because there is no way of telling what is going to happen, I just try and take things one step at a time and hope that Kieron is happy.  That’s all that really matters to me.

I know that people look at me and Kieron and feel sorry for us, I am always being told how brave I am, or asked how I cope. I am sure that other parents get that a lot too. But really I don't look at it like that. I have come to the conclusion that disability is norma and a part of lifel, and what has happened to me can happen to anyone. None of us know what lies ahead, and if you have a child its possible that you could have one who ends up with a disability, either from birth or later on. And its not a matter of being brave, its a matter of loving your child just like any other parent does. I don't really think of Kieron as being disabled at all now, I just see him for what he is, a great child who happens to find certain tasks difficult. I have never met another parent in the same position as me who didn't love thier child unconditionally, and I have never heard anyone say they regret having thier child. So maybe this will help parents of newly diagnosed children, it may be hard work at times but there is definately light at the end of the tunnel.