Rosie Cross, a former secondary school music teacher, had been teaching the piano for more than 20 years when she got a phone call from a woman asking her to take on her two boys, aged seven and five. "And by the way, the older one has Down syndrome," she added, as she put the phone down.
Rosie Cross's first thought was: "I can't do that - I've got no experience." She phoned round colleagues, hoping to place the boy elsewhere, but nobody would take him. So she decided she would have to have a go.
"It was very difficult at the beginning," she remembers. "His speech was poor, his concentration wasn't very good, and his fingers were very flimsy.
There was no traditional learning pathway for Tom - but he really wanted to play the piano."
People with Down syndrome tend to have very poor muscle tone, and Rosie Cross began to build up Tom's fingers, hands and arms using exercises for three fingers on the black keys and a piano primer. But she soon realised that reading music "is not a realistic goal for those with Down syndrome".
With some help from a professional development course run by the Associated Board, the CT ABRSM, she and Tom branched out into music-making that was more creative and more improvisatory.
Tom's first attempts at improvisation were "loud and bangy", according to his mother, Helena Stopes-Roe, an amateur violinist. But gradually he has learned to piece together the building blocks of music, using chord sequences and snatches of melody that he loves - such as Grieg's "Morning", or the theme tune from the film The Snowman - to weave complex and highly structured improvisations, that can be both lyrical and haunting.
"The piano has given him a big creative outlet, as well as a valuable pastime," says Helena Stopes-Roe. "There's been a huge improvement in his fine motor skills, and his language. He has become very adept, in his own way, with the world around him, and I'm sure music has helped."
Now aged 17, Tom plays the piano with all the panache and musical passion of a young concert pianist. He loves to perform, from his wide repertoire of improvised works, and he delighted the audience of teachers and parents at a conference in Birmingham last year, organised by Rosie Cross to spread her ideas.
Of her 55 current piano pupils, who range from beginner to diploma level, five have Down syndrome and one is autistic. To promote the teaching of musical instruments to children with disabilities, Rosie Cross has recently set up a charitable organisation called "Melody" (with help from Frank and Valerie Albrighton), which already has 60 members. A further conference is planned on February 21 and Melody's website will soon include recordings plus notes for teachers.
Damian Villalobos-Finigan is a 21-year-old with Down syndrome who began piano lessons with Rosie last Easter. He practises three- and five-finger exercises, plays "Merrily we roll along" with much enjoyment, and is beginning to improvise.
According to his father, Orlando Villalobos, Damian has always enjoyed music: "I felt he needed something a bit more structured than the music therapy sessions he had when he was at school - but we didn't think it was possible until we met Rosie Cross: we hadn't come across anyone who was prepared to do it. Whereas we have to drag our other children to practise, Damian complains if he doesn't get his turn. Playing the piano has already increased his hand manipulation, and it also seems to have given him a bit more patience."
Six-year-old Ziekel Wallace Fitzpatrick has Down syndrome, and started piano lessons two years ago. "It took a long, long time to get his fingers going," says Rosie Cross, "but now he is thoroughly enjoying his improvisation work."
At the music conference last year, Ziekel was fascinated by the sound of the bagpipes. He has since devised his own piano piece, which begins with "bagpipes sleeping".
"Ziekel's school has noticed a dramatic improvement in him," says his father, Colin Wallace, who takes a very active role in Ziekel's music. "He can now do buttons and tie shoelaces, it's improved his language and helped his writing. It's been hard work - but very rewarding."
Parental support is a critical factor for these pupils, says Rosie Cross, and teacher and parent need to build up a good relationship. "Involvement is 100 per cent - especially in the early days," says Helena Stopes-Roe.
"But the wonderful thing about having a child with a disability is that it makes you reassess what achievement and progress are all about, and let your child be who they are."
All that Rosie Cross and Melody hope for now is that other music teachers will feel emboldened to have a go themselves. "What most people say is that they wouldn't know how to start. But it would be so nice if other teachers took this on: it would give people with disabilities more opportunities to be creative."
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