For many parents of children with learning disabilities the dilemma of where to send their child to school is a cause of great concern. While the EPSEN Act 2004 offers the entitlement of children with special educational needs to be ‘educated in an inclusive environment with children who do not have such needs’, questions such as ‘what is available, what is best, will my child be accepted, and if so will she or he cope?’ will still be to the forefront of parents’ minds. Fifteen years ago, Fidelma O’Farrell set out to find the right setting for her daughter Ruth. In an interview with Áine O’Neill, she remembers this journey through the education system.
My daughter Ruth is eighteen years old. She has just completed four years in a special class for students with moderate general learning disabilities in a mainstream secondary school and is about to embark on the next phase of her education. This will include time in a Training Centre focussing on lifeskills and further education in literacy and numeracy provided by the local VEC.
When we started thinking about Ruth’s education in 1992, the choice was limited. You went the route of a special school or mainstream school. There were no special needs assistants in mainstream schools at the time. I thought I wanted to try to get her into a mainstream playschool and see how she would cope. I have to say at that time her service providers were telling me that a mainstream environment was not suitable for Ruth and that she should be in a special setting. I felt that they thought she would not really progress, but I didn’t believe them. I also couldn’t accept that somebody who only saw her once every so often could make a decision like that. I was with her all the time and I had hope, I still had hope at that stage, that I could ‘fix’ her. One local mainstream playschool offered ‘to give it a try and see how it goes’. So I turned up with my child who had very bad eye contact, no language, was not toilet trained and could hardly stand up straight.
She couldn’t walk with ease or run or climb and had had absolutely no interest in other children. The playschool was staffed by two amazing women, who were open to trying everything. Initially, I found it difficult to leave Ruth and offered to stay and help with the other children. I did this for a while and then they packed me off to ‘go have a cuppa coffee, meet a friend etc.’ This was very difficult. When you have a child with special needs you are so in tune with them you can’t imagine how anyone else could meet their needs. However, at the age of three, the cord was cut and Ruth began her experience of education.
Ruth made very slow but steady progress at the playschool but by the age of five, as for all children, it was time to move on. Once again the search for a suitable place began, and I went from school to school with Ruth until again we got lucky and found a Montessori school willing to take her. She progressed well there. She again had a wonderfully dedicated teacher who was interested in trying different ways of teaching until she found the best—the one that got the best outcomes. We discovered that Ruth had a great visual memory and learned to identify numbers and loved reciting from her baby books. The school was so interested in Ruth and celebrated every little bit of progress. Nothing was too much trouble. This school only kept children until they were eight, but by then I heard that a special class for children with moderate general learning disabilities was being set up in a local primary school on the south side of Dublin. I applied for a place for Ruth and she started there when she was nine. So there she was, enrolled in a mainstream primary school. She still had very little language. It was the teacher there who really helped her to make the breakthrough from individual words to sentences. She did this by playing to her strengths, using her visual memory to teach language using special language cards.
The way the class was set up in the primary school was that the children were in a special class, but they were also attached to a class for their own age group. In this way a seven year old was in with seven year olds for certain times of the day—not for very long, but maybe for a PE class or for drama or for art, wherever it was possible to integrate. Also, out in the playground, in the shows and concerts that they put on, everyone just mingled. It was great. In a way I think there was an element of chance that Ruth ended up in a mainstream school. I was lucky in the people who helped me and the places where she was accepted. I was also lucky to be in the right place at the right time in relation to the class in the primary school.
There were eight children in this class and the parents of the children became really good friends and were very involved in the school. We also were bonded together when we had to go to court because our children were cut off from ‘services’ (physiotherapy, occupational therapy and speech therapy) when they were enrolled in a mainstream school. They were deemed by this to be in the care of the Department of Education and not the Department of Health. We asked for the service to be restored but this was refused and we had to go to court to achieve this. The judge ruled in our favour, but the struggle took two years—two years of therapeutic intervention lost to the children while the issue was being resolved.
Then the time came to start thinking about post-primary school. We were pleased with the primary model and we wanted this experience for our children to go on, but there seemed to be nothing similar available at second level. We investigated special schools but also we heard about and visited a school in Killina, in Co. Offaly. This is a mainstream secondary school with a special unit for students aged thirteen to eighteen with moderate general learning disabilities, very like the model we had in mind. It had what we wanted, the mainstream environment, the one-to-one, the individual education plans and the chance for our adolescent children to integrate with their own age group wherever and whenever they could. We spent the next four years battling to have a similar class or unit set up in Dublin. While everyone in the Department of Education thought it was a great idea, putting that idea into reality was another story. It took endless meetings, phonecalls, emails, meeting with politicians, writing letters—you name it, we did it. However, in the end we succeeded, we found a school, a local community school, that was willing and had the available space to take the class. We went from having nowhere for our children in February, to having a class, trained teachers and special needs assistants, all in place and up and running for September. This was an amazing achievement and it had much to do with the school’s attitude which was ‘let’s do it’. When we were enrolling the children the Principal met each set of parents individually. At that meeting he asked me what I wanted for Ruth and where did I see her going. Ruth was fourteen and I think this was the first time I had been asked that question by a professional.
There are now two classes for students with moderate general learning disabilities in this community school, and they are an enormous success. The students are taught by mainstream teachers, they circulate around the school at the class breaks the same as the other students. They are totally accepted and part of everything that happens in the school. Each child has his or her individual plan as well as the usual reading, writing, basic maths, home economics, PE etc.
You might ask ‘what’s the difference between the learning in this special class setting and the learning Ruth might achieve in a special school?’ The difference for me is environment. Ruth behaves like any other adolescent. She’s been known to ‘hang on radiators’ with her sleeves pulled down over her hands, like any other teenager. We were in Woodies recently and the young lad on the till goes ‘Hiya, Ruth’; she goes ‘Hi’. She comes out and she is amazed that someone is working there who’s in her school. ‘I know him there, he’s in my school’. It’s about being included, part of things, part of the community. I suppose also that the other students who meet our children, in their future lives will move into different places. They will go to universities, to workplaces and they will meet people with disabilities and hopefully they won’t say ‘oooh, I won’t talk to him’. They’ve met people with disabilities; they’ve seen them in the school concert or play and at sports day. They’ve seen them coming in and out of school, they are supportive and helpful. I’ve seen young people help Ruth out of buses in town because they know her from school. They have a better understanding, you know, they will look further than their nose—they will see the person first and the disability second.
I think that when you have a child with special needs you get a particular insight into education. I feel that I’ve got to know schools and how they work and some of the detail about what goes on in them. When you have a child who doesn’t have a disability, like my older daughter—she went into school and she came out of school, she did her homework and she did her exams, she was in the school play and took part in events. But, really, I had very little to do. I did my bit for the parents’ association and I went to parent teacher meetings, but I didn’t have to think about what was happening next, other than the normal kind of things like, ‘what’s she going to do when she does her Leaving Cert’? ‘Is she going to go to college?’ I didn’t have to think the way you do when you have a child with special needs. There are so many things that you have to think of all of the time. Everything is a challenge for them, everything. Going to school, moving from the primary into the second level and thinking ‘God is she going to cope in here, will she act out and have to leave because she’s not able to cope with this big environment, the noise and big people everywhere, coping with different teachers’. You have to anticipate every challenge, even very small ones that you wouldn’t think about with other children and you have to communicate them to the school. Then you are talking to the teachers, you have to help them to put themselves in your child’s shoes and realise how much harder the world is for them.
Looking back, if I were to offer any advice to parents it would be to trust their instincts. This would be the main thing. It is most important to build good relationships with the school, whatever school your child is in. Try to help the teacher to know the best way to teach your child. It’s not enough to just be relieved that the school will take him or her. Instead of just saying, ‘phew that’s great’, ask what does this mean for me. It means you have to be willing to prompt, to get involved in the trial and error, seeking the best way, working with the teacher. Some schools have no experience with children with disabilities. My experience is that I was able to give an insight into what worked for Ruth and it was accepted willingly. It’s all about teamwork. Schools gain experience and it makes things easier for the next set of parents coming along.