Aaron Fenech’s face creases into a smile as he holds up a large paper covered with little lines he meticulously drew with a pencil.
“The ruler,” he mumbles, when asked how he drew the equidistant lines of different lengths.
“Then the colours… I like colours,” he adds with a shy smile as he reaches out to his pencil case to show off the rainbow of crayons inside it.
The 25-year-old, who has Down’s syndrome, loves colours and has come up with his personal form of art.
“This is his particular way of drawing. It’s his method. I don’t know where he learnt it from but he’s been doing it for a long time now. First he draws lots of lines with the ruler. Then he lines up his colours and meticulously starts colouring them in,” his mother Rita says.
Her husband, Pio, adds: “What fascinates me is why he draws the lines in different directions. We never saw anything like this.”
It can take weeks for Aaron to complete one of his colourful drawings. But lately this is dragging on into months since his interest has shifted elsewhere.
He spends lots of his time seeing music videos on his laptop and, at the moment, one of his favourite songs is Gangnam Style.
“Laptop. Music. I like a lot,” he says when asked what he is doing while he sits in front of the fireplace at his Mellieħa home.
Aaron does not speak very clearly but he does join into the conversation with single words and manages to express himself in a basic way. Ms Fenech recalls the day she gave birth to Aaron, the third of four children. He has two elder sisters, aged 26 and 27, and a younger brother who is 24 years old.
“I am a nurse so I realised something was up. I realised that his eyes were more slanted than my other children and his fingers were fatter… So when the midwife took a blood sample, I realised he could have Down’s syndrome…
“We didn’t take it that badly when it was confirmed. They told us his was a mild case and he did not have complications as many often do,” she says.
As Aaron grew, the couple could compare his progress with that of his two elder sisters. It took longer for Aaron to learn how to walk, talk and get potty trained.
When he turned three years old they sent him to a Ħamrun school for disabled children. But his mother realised that he started regressing.
“He started crawling again and used to leave his tongue hanging out,” she says, adding that he was eventually sent to a mainstream school in Mellieħa.
From there he moved on to secondary school and attended a trade school in Naxxar where his flair for creativity flourished through woodwork.
When Aaron left school, at the age of 18, his parents wanted to send him to an adult training centre to continue learning. But there was no place.
He has been on the waiting list since then and, meanwhile, he is back at the Ħamrun school for disabled where he is learning how to use computers, among other things.
“We wish he could go to the adult training centre but he is still on a waiting list and they keep telling us there is no place for him,” says his father, who is a committee member of the Down Syndrome Association.
As parents, their dream is to see Aaron settled and more independent. Last summer he attended an eight-week employment training programme to try see how he does in the working world. They believe he would be good and something that requires repetition.
“He is intellectually disabled and has a short memory and is a slow learner. When something has more than three steps he blocks, but otherwise he’s no trouble. He makes friends easily and is independent…
“If he sees me prepare food he asks if he needs to peel some potatoes. When there are plates on the sink he dries them and puts them away and is constantly clearing things away,” his mother says.
His parents have noticed that the older he grows, the more he enjoys time with people who have Down’s syndrome like him.
“This is one of the things the association is working on. There aren’t many places where people with Down’s syndrome can socialise… We are working with the government to find a place we an use as a social club,” Mr Fenech says.
“We also worry what will happen when we die,” he says, though adding that the new guardianship law was a positive step towards granting them peace of mind.
Parents’ concerns
Down’s syndrome is the most common known cause of intellectual disability and results from the fact that a child has 47 chromosomes instead of the usual 46.
Every year, between seven and eight children with Down’s Syndrome are born in Malta but the exact number of people with the condition is not known, according to Marthese Mugliette from the Down Syndrome Association.
This question should be answered with the publication of the next national census that includes information on various disabilities.
As she listed the main concerns of parents she pointed out that, notwithstanding that learning support assistants were allocated to students who had Down’s syndrome, few were finding employment,
“Problems are being encountered by people who have Down’s syndrome to access the labour market. This may be partly due to the fact that they are not being professionally prepared for work and also due to lack of Supported Employment Structure,” she said.
The public transport system was not accessible and there was no leisure place where they could meet on weekends to socialise with their friends. Ms Mugliette said there was also the lack of supported independent living schemes to help them live an independent life, especially when their parents passed away, and pensions were not good enough to ensure they could sustain themselves independently.
There was also a lack of training for people who had Down’s syndrome to speak about themselves and for themselves, she said.
www.dsa.org.mt
The Sunday Times is telling the stories of people with various disabilities who are overcoming societal barriers. These monthly articles are aimed at helping society understand the needs and concerns of the 34,600 disabled people in Malta who are often hindered by lack of accessibility and understanding. Anyone who has a story to share can contact ccalleja@timesofmalta.com.