Michael's Story

Mary says that she had always associated respite with nursing homes and was very apprehensive but as they were introduced very gradually they eventually came around to the idea and went up to see the unit....The first time they went up Michael was terrified at the thought of being left on his own but because she was able to go with him and stay with him it made the decision easier and they decided to give it a go. On their second visit Michael loved it, he had ‘great craic’ with the other boys and the staff and Mary enjoyed the break too and they couldn’t wait until their next stay came around.

Michael is Mary’s first born child and she was looking forward to his birth. All scans were perfect and she had a trouble free pregnancy. As Michael was breach position a caesarean section was booked, but otherwise all was well and on 07.02.94 Michael was born and ‘everything was fine’. 

At about 7 weeks of age however, Mary took Michael to the G.P. as she was worried because he had a temperature. However the G.P. ‘wasn’t happy with him’ and said his neck was ‘too floppy.’ He was immediately admitted to the local hospital for monitoring and further assessment and they then transferred him to the regional specialist children’s hospital for muscle biopsies as they too agreed that he was ‘too floppy’. It was shortly after this that Mary got the ‘heart-breaking’ news that Michael had Congenital Muscular Dystrophy.

Mary describes how when she was told this news she "couldn’t understand the words, couldn’t believe that it was true and just couldn’t believe that he would never walk". I kept saying ‘but how do you know he’s only 8 weeks, I just wouldn’t believe them and it took me 7 years to believe that he wouldn’t stand on his own two feet’. 

During this time Mary got practical support from her mother and sister but emotionally she says, "I just coped by myself and had to get on with it".  The health visitor and physios were calling "but they were no good at supporting".  

Michael had a lot of physio exercises. Mary said that, "it started off slowly, like once a week for half an hour but I got it into my head that the more exercises I did the better it would be for him. I thought the more you do it’ll help him to get on his feet, so everything they told me to do I did and more" and Mary put a lot of pressure on herself to do the best for her son and she believes this worked. "It was only when the muscles in his legs got too tight for him to use his standing frame that I accepted that he wouldn’t walk but it took me 7 years to believe this and I kept on going with his stretches." 

Mary believes however that her dedication paid off because whilst he regularly had his posture checked at orthopaedic appointments it wasn’t until he was 12 years old that scoliosis was first mentioned. Mary says, "one day I asked the doctors why they were always checking his back and that was when I was told that they were looking for signs of scoliosis." This was another shock and the thought of surgery that was then suggested was terrifying. 

Meanwhile Michael had started at his local mainstream school and was the first wheelchair using child in his local area to go into that school.  It was then that Mary says her and Michael were introduced to the world of ‘disability discrimination’. Mary describes how "the first 2-3 years were fine, the children didn’t see him as any different he was just in a wheelchair and they got used to it", but Mary believes that it was adult influence and the example set by some of the teachers that changed things for Michael and made him start to see himself as different, particularly, when a new principal joined the school. Mary felt that his focus was very much on sport and ability in this area and because Michael was in a wheelchair he was disadvantaged. At this point Michael described how he felt ‘pushed to the side’. When it came to picking football teams the teacher would have picked two boys to pick a team each and Michael was always the last boy to be picked as the focus was on winning. There was also an occasion when Mary noticed that Michael had got some answers in his maths homework marked right when they should have been wrong, after this happened on a few occasions Mary challenged the teacher because she didn’t want Michael to be treated differently than the other boys and she felt that Michael was capable of better and his abilities were not being pushed simply because he had physical disabilities. Eventually Michael himself asked if he could go to a school where the children were the same as him because he couldn’t cope with being treated differently.

At this point Michael transferred to a school for children with physical disabilities almost 50miles away. Mary says that the difference was amazing. The staff couldn’t do enough to help him settle in, they recognised that Michael had talents and the other children enjoyed him reading to them and telling them stories, it was also here that he developed his talent for art. However because of the distance Michael travelled to school it was hard for him to socialise with his peers outside of school or meet with young people in his local area. 

At age 12 Michael’s scoliosis progressed to the extent that surgery was recommended and it was at this point that Michael was referred firstly to a Community Children’s Nurse Pauline, who then referred him to the Children’s Hospice for support in relation to pain management but also for respite care. Mary says that she had always associated respite with nursing homes and was very apprehensive but as they were introduced very gradually they eventually came around to the idea and went up to see the unit. Mary says that the first time they went up Michael was terrified at the thought of being left on his own but because she was able to go with him and stay with him it made the decision easier and they decided to give it a go. On their second visit Michael loved it, he had ‘great craic’ with the other boys and the staff and Mary enjoyed the break too and they couldn’t wait until their next stay came around. Mary says that this too was a great opportunity for Michael to meet with other young people with similar needs to his own and help him to feel ‘less different.’

Michael has now entered the world of adult services. Whilst this is an achievement in one sense, it has presented great loss too. Mary says "once you come to 18/19 it’s very hard and another big change in your life. He has left school, there’s nothing for him to do". Mary also feels that she has had to fight for services, particularly equipment, but most of all they miss the respite that they had. "It was a chance to get away from your own family life, you could relax and do your own thing, it was brilliant, of all the things that has changed that is the one thing I miss the most, I’m heartbroken because no matter what health problems I had or in dealing with him, it was something to look forward to". Michael agreed that the teenage weekends organised by the hospice ‘were brilliant’, but there is hope in ‘Beyond Horizon’ and both Mary and Michael are positive that something more permanent will come of the Saturday Day-care pilot project and more permanent respite in a suitable young people’s facility will develop.