It is hard to know where to begin in telling Gerard’s story—perhaps it is best to start at the beginning. Gerard was born on 11 June 1981 in the Coombe Hospital, Dublin. He weighed 11 lbs 13 ozs. And apart from colic he was a perfectly healthy baby. When he was two he started having bouts of blackouts; I would come into a room to find him asleep on the floor. We got worried as the blackouts became more frequent and we got a referral to a hospital (National Children’s Hospital, Harcourt Street), where he was eventually diagnosed as having epilepsy. Gerard was also very hyperactive and the doctor recommended we see a physiologist. He was then diagnosed as having an uneven development. He attended a playgroup for children with ‘ behavior problems’, which we found very helpful.
From there he went to a special school in Ballyowen. There is no point in denying that Gerard was a very difficult child to handle. In his new school they coped well until he reached the age of eight or nine. Then we were constantly called in because he was hitting out or throwing things. These episodes happened about once or twice a month. We asked if there was more suitable place for Gerard. Ballyowen was set up for autistic children and Gerard was not autistic. I can only say the attitude of the management out there did not help. We were told that we were lucky to have Gerard in any service and should not even try to find anywhere else. We felt this was a threat; we thought that we might end up without a service, because they would not recommend any other school to take Gerard. At one time I was asked to a meeting and put sitting on a chair while the various bodies from the school sat in a half-circle around me. I remember thinking it was more like an interrogation, than a meeting to decide how best to help Gerard. I left that day and cried all the way home with a feeling of helplessness.
During his time in Ballyowen Meadows, Gerard had his thumb dislocated by a member of staff. The school manager told us she would stand one hundred per cent by her staff and any investigation by us could lead to them withdrawing their services to Gerard. When he came home with his hand so badly swollen, we took him to hospital. While there, a doctor questioned him as to how he received the injury, she informed us that what Gerard said had to be the truth owing to the nature of the injury and that an official report would have to be made. It was on hearing this that the school started the inquiry into the situation. We continued sending him to school during this time and it was something that happened during that week that confirmed our decision to take Gerard out of Ballyowen Meadows. While having his dinner one day he was told he would get no dessert because he was telling his Mammy and Daddy lies. This came from a qualified nurse! Professor Fitzgerald from the health board visited us at home. He questioned Gerard about the incident and asked us what we wanted. All we asked was for Gerard to be provided with a new service. A few weeks later Gerard started in St Vincent’s on the Navan Road
It was some time later that we learned that this was the second time the member of staff was the subject of an inquiry by the health board and to our amazement she was named yet again in another incident.
Gerard was very happy in St Vincent’s and continued to do well there until he reached the age of 13. Then things started to go downhill. He was a big lad and as his behaviour got worse, the school was not able to handle him. He was moved to the Day Activity Centre. He got on very well there with the staff and clients and enjoyed various activities and outings.
During the years Gerard spent in St Vincent’s, we had many meetings with staff, doctors and management. While the meetings with staff were always friendly and we were asked for our opinion and wishes for Gerard, the management meetings were entirely different. Our opinion seemed to count for nothing. We were very dissatisfied with Gerard’s medication and deeply worried of the effect it was having on him. Yet no matter how often we asked for it to be reduced or modified, we were politely told to leave it to them—that it was their job. They just refused to listen to us. Yet who knows their child better then their parents? Living with them every day, seeing the changes and effects some medication has on them.
Gerard continued in St Vincents until he was eighteen. We brought Gerard to the service because his transport had been withdrawn due to his behavior. One Monday morning in September 1999, it was pelting rain and Gerard was not in the best of form. Halfway on our journey he attacked us in the car, how we made it to St Vincents was a miracle. Upon arriving there it was all taken out of our hands. Calls were made to the then Eastern Area Health Board and a decision was made that Gerard had to go into residential care.
What happened then is quite unbelievable. St Vincents refused to give Gerard a bed, the ‘health board couldn’t find a suitable place for him in another service provider, so for five weeks Gerard slept on a mattress on the floor of his day care center. During this time we had numerous meetings with both management of St Vincents and the health board. We begged them to give him a bed; they refused, but suddenly they could offer us transport to and from his service—something we had previously been refused—but only if we took Gerard home that night. On advice, we declined.
On the day after the attack took place, I had received a phone call from the Director of Services in St Vincent’s, who asked me to charge Gerard with assault. I was still in shock from the day before and couldn’t believe what he was asking me to do, but I did tell him NO. We found out later that some members of staff were also asked to charge Gerard with assault; they also refused. We have a copy of a letter sent by the management of St Vincent’s to the Garda Superintendent at Cabra Station, asking him to arrest Gerard. I rang him some months later and asked him had he received the letter; he confirmed that he had and expressed his disgust at it. He also said he wouldn’t have involved any of his staff in such a loathsome act.
While this intolerable situation continued, we were only able to keep going because of the staff looking after Gerard. During one meeting we were asked to take him home as there would be no one to look after him that night and he would be on his own. Again, on advise, we refused. We had planned to go secretly to see if Gerard was all right that night, but we hadn’t left the house when we got a call to say he was ok and that he had a member of staff with him. God bless these people, they know who they are, and I know we can honestly say without them we would not be here today. The phone calls, reassurance and support we received from them kept us going. A letter was sent to the Central Management, signed by the nursing staff in the Day Active Center, stating that ethically they could not condone the way Gerard was being treated.
I find it hard to explain how helpless we felt during these weeks. It was as if Gerard was a ball being thrown between the health board and St Vincents, neither wanting to take responsibility for him, neither giving an inch. Meanwhile, our beloved son was still sleeping on a mattress in his Day Center in totally unsuitable conditions’. All we wanted was a suitable service for Gerard, yet it was all coming down to politics. As the weeks went by, the meetings we had with the management were becoming more hostile. It is not an exaggeration to say that at times it felt like we were being intimidated. Were we not all meant to be on the one side, Gerard’s side, trying to find a solution to this problem together? Unfortunately, as time went on it never felt that way.
The nurses’ strike was looming and if this came off we knew we would be in big trouble. While St Vincent’s staff covered a lot of the extra shifts in looking after Gerard, some temporary staff had to be brought in and we all knew this couldn’t continue if the strike happened. It was a Friday evening when I got the call from Declan Nolan in the health board to say they had found a place for Gerard. My initial joy turned to suspicion as I quizzed him about where it was; he was very vague and refused to say. Eventually he told me it was in England.
Our first reaction on hearing this was one of horror. How could we be expected to send our vulnerable child away to England, to strangers? He had lived at home with us for eighteen years and now, when it became necessary for him to go into residential care there was nowhere for him to go, except England? During these last five or six years we, as a family, had struggled to survive living with Gerard. But he was a much loved son and brother, and we continued until it became impossible. Now our reward for all that struggle was for Gerard to be sent to England, because of the lack of places in Ireland.
The centre that had agreed to take Gerard was in Whalley, Lancashire; it was called Calderstones. Three Calderstones staff members came over to assess Gerard. They were quite shocked at his situation and, although they felt it was wrong to take him out of his home environment, they knew they could help him and offer him a better service then the one he was receiving at present.
During this time we contacted numerous people for advice and to ask for help. It was a surprise to find the reaction of many people, particularly those working with or themselves with a child with a disability. We were told how lucky we were that money was being spent on sending Gerard to a service, even if it was in England. But we certainly did not feel very lucky. Despite all our efforts Gerard went to Calderstones National HealthTrust in October 1999.I had previously visited Calderstones with our social worker, Eileen, and we both thought that Gerard would be better off there then in his current situation.
Our journeys to and from England to see Gerard were naturally very stressful. We never knew what his mood would be, although thankfully he was normally fine. Physically they were also stressful, as we had to leave our house at five am when were travelling. We would arrive in Manchester Airport before eight and then had a two and a half hour train journey to Whalley. We arrived at times to find the trains on strike or not running due to weather or some other reason. We have traveled by plane, train, bus and taxi all in the one morning. We then had to leave Gerard knowing we wouldn’t see him again for several weeks.
We visited Gerard every three or four weeks and he did settle in eventually. After about two years (he was only meant to be there one year), we all settled down as we realised that Gerard had improved in both his weight and behaviour. He went from twenty-three stone to sixteen stone; his medications were reduced from five or six to two, and he attended anger management, speech therapy and behaviour therapy. He attended all the IPP meetings that concerned him, his opinion was asked for and he was always treated with dignity and respect. We can never thank the staff in Calderstones enough for all the kindness and care they gave Gerard and us on our visits.
We shall always be grateful to them for helping to make this difficult time a little easier. Gerard was there for five and a half years and during this time we made many friends among the staff of Calderstones and the people in the little village of Whalley.
During his time in England we were constantly in contact with the Northern Area Health Board and our various TDs to try and obtain a place in Ireland for Gerard—but to no avail. In 2004 we were told that Gerard’s unit would be closing within the next year and it became imperative to find him a service here. We were put in contact with the Director of Services in the St John of God Services, who agreed to assess Gerard to see if they could offer him a place within their service. Two of their members went over to visit Calderstones and the outcome was they were willing to take Gerard. We had many meetings over the next few months and were told that they needed funds to set up a step-down unit and they could then take a number of people, including Gerard, who had to go to England for a service, back home. We started the rounds of meetings with TDs, the Taoiseach and the health board to try and secure the money needed. Imagine our surprise when on phoning St John of God’s one morning we were told that the Director of Services had left and was no longer working there. Not one word to us, no phone call, no letter. Yet again we felt let down, although we should have been used to the callousness of the private sector by now.
We were asked to go to meet a member of the NAHB in October 2004; there we were introduced to Gerry Cobb, Director of Nursing in St Itas Hospital in Portrane.’One of the reasons we agreed to let Gerard go to England was our fear that he might end up in a psychiatric hospital, so our reaction on meeting Gerry was one of suspicion, but we did agree to go and see what they were offering. St Ita’s Hospital is very similar to what Calderstones was like about ten or twenty years ago. They too had old buildings, most of which are now pulled down and lovely new purpose buildings have taken their place. A lot of the land was sold off to pay for this and looking at St Ita’s we could very easily see how the same could happen here. More importantly we were impressed with the service they were offering, so we agreed to Gerard being brought back to St Joseph’s Disability Service in Portrane. He was to have his own room in a cottage in the grounds of St Ita’s and, while the living accommodation was not perfect, it was adequate for Gerard’s needs.
Gerard came ‘home’ on 23 March 2005. For two weeks he cried to go back to Calderstones. He is settling down at last and on our most recent visit he said he liked it here ‘because the staff are funny’! He still talks of his friends in St Vincents and Calderstones’, but he is starting to make another set of new friends in St Josephs. At least we know that Gerard has a place for life in St Josephs. As we were told, ‘The buck stops here’, when the private services cannot deal with a difficult client they often end up in St Josephs. We are able to visit Gerard as often as we like now and share all the special times with him.
We may have ‘won’ one battle, getting Gerard back home to Ireland, but in the end it was money and what it would have cost to keep him in private care in England that got him back. Despite having been told that a Challenging Behavior Unit was being set up in 1999, when Gerard was sent to England, there is still none in existence.
As any parent with a child with a disability knows—with every battle won there is always another one to be fought.