When Maria James was diagnosed with Down syndrome, her parents Mario and Jane felt their world had ended. Today Maria rides a pony, swims and acts in school plays. Her mother opens up to Veronica Stivala.

Maria was born to Mario and Jane James after three boys, but the mother soon learnt her newborn would not be like her brothers.

Do not pity your child but help him in the best possible way you can

Knowing nothing about this genetic condition, the Jameses believed a child with Down syndrome (DS) would be a simpleton and unable to learn.

The family even moved home as they thought their daughter would be wheelchair bound. The parents were particularly worried about what would become of Maria when they were no longer around.

But Ms James soon learnt that encouraging independence was the key to personal realisation and understood the importance of not trying to unduly protect her child by treating her differently.

Aged 10, Maria is already proving she is going to be as independent as possible. She was a fast learner, gave no trouble to discard her dummy, never wet her bed, broke her siblings’ record in saying her first word and also learnt to read very quickly.

A lively character, Maria overcame her fear of water and at the age of four she had already discarded her armbands.

She has a pony and loves going to horse races. At a regular school with adapted learning, she joins in all the lessons and extra-curricular activities with her peers.

The James’ family found ample help and support from what is now Inspire to deal with DS, a genetic condition caused by an extra chromosome, prompting learning difficulties which can vary from mild to very severe.

At the age of five, most able children with DS are often functioning near the average level of their age. At the other end of the ability range there are children with profound and multiple disabilities, often linked with conditions such as autism and epilepsy.

Back in the 1990s, the children were either institutionalised or attended special schools. Very few were sent to mainstream schools and those who did received little or no help.

Being fully aware of changing attitudes and opportunities available today, the Jameses enrolled their daughter in Inspire’s PACES programme. It caters for the educational and therapeutic needs of those with DS and has a team consisting of a speech and language pathologist, an occupational therapist, a physiotherapist, as well as a psychologist.

Rosette Gatt, programme manager of the Department for Intellectual Disabilities, leads the team of professionals working with DS individuals from their earliest days in the home, school and community for as long as they are in any educational setting.

Among other initiatives, the learning support assistants prepare educational materials and participate in the performance and behaviour programme of the student who eventually moves into the Adult Programme which caters for the training of young adults to help them find jobs.

Inspire’s latest campaign is to attempt to integrate adults and adolescents with this condition into the working world as well as prepare them for independent community living.

But Ms Gatt notes the need to keep an eye out for a number of medical concerns.

“If people with Down are not monitored throughout life, chances are they will be set far back because of the development of some concern or another.”

Thanks to the Down Syndrome Association of Malta and the Health Ministry, a clinic has been set up to monitor adults with DS.

Another challenge is limited funding. Although the government funds the educational aspect of PACES, it does not cover the therapeutic side which is increasingly becoming a burden on Inspire’s resources. Furthermore, new students are no longer being funded by the government though it is reassuring that the home service still remains.

Ms Gatt highlights the importance of parents’ awareness of the dangers of individuals working on their own.

“Teachers cannot work without the backing of a core team. After 20 years of working in the field I too am constantly learning new things.”

What is Ms James’s advice to parents of children with DS?

“It’s very difficult having a child with Down syndrome and you remain scarred for life. But you have to fight for his rights. Do not pity your child but help him in the best possible way you can. It’s so rewarding to see your child learning and achieving.”

Down syndrome awareness week is marked between today and March 26. Activities include a seminar entitled ‘Enriching the lifestyles of persons with Down syndrome’ at the Corinthia Marina on Saturday.

For more information call 7973 4163 or e-mail rosette.gatt@inspire.org.mt. For details on how to contribute to Inspire, e-mail friends@inspire.org.mt or call 2189 0000.

• Discovered by John Langdon Down in 1866, Down syndrome was first known as Mongolism.

• One in every 2,000 births results in a baby with DS, when the mothers are between 18 and 35. However, one in every 200 births to women aged over 35 will result in a baby with DS.

• People with DS are living longer than ever before. The average life span is now 65.