A group of parents with Down Syndrome children have set up a non-profit organisation. KAREN CHAPMAN find outs more from the current president.
WANTING an organisation that solely represented the needs of those with Down Syndrome (DS), a group of parents got together in May 2001 to set up a non-profit organisation called the Malaysian Down Syndrome Association, which goes by its Malay acronym PSDM.
There was no registered body to represent the DS community at the national level, prior to PSDM.
Shares one of its founding parents and current president Assoc Prof Dr Sharifah Zainiyah Syed Yahya, the uniqueness of PSDM is that all its council members are parents of DS children.
“We hold gatherings twice a month at Rumah PSDM, on the second and fourth Saturday of the month, which are organised by our Women and Family Development bureau,” she says.
“A special child is a gift from God”, says AssocProf Dr Sharifah seen here with a DS child.
The children with DS have educational activities while their siblings receive English tuition from a volunteer mother.
The mothers are engrossed in cookery lessons while the fathers are left to socialise.
Assoc Prof Sharifah says parents can also send their children to Rumah PSDM every day – which is provided rent-free to the organisation and is the administrative centre and venue – for day care as well as various programmes such as early intervention programmes (EIP), post EIP and pre-vocational.
Rehabilitation programmes such as physiotherapy, occupational and speech therapy are also offered.
“We run a day-care programme from 9am to 5.30pm so that parents can go to work with peace of mind knowing their children are well taken care of.
“Our PSDM honorary secretary Nur Azleen Abdullah is the administrator here and is responsible for the day-to-day running of the centre,” she says.
Earlier this month, PSDM held their national family day in Malacca.
Assoc Prof Sharifah says this was the first time members from all over Malaysia were meeting for the first time.
“A total of 729 people came for the gathering. Of that, 300 have DS,” she says, adding that the gathering was a big success.
Not a disease
In 1959, a French geneticist, Prof Jerome Lejeune, discovered that DS was caused by the presence of an extra copy of chromosome 21, making 47 chromosomes in all.
Normally there are two sets of genes in each of 23 chromosomes in every cell in the body. One set is from the father and one set is from the mother.
He discovered that patients with DS had a third set of genes at chromosome 21.
Assoc Prof Sharifah explains that people with DS do have features in common but they also closely resemble their parents and family.
There are many characteristics attributed to DS but any one person will only have some of them. Each person is an individual with a unique appearance, personality and set of abilities.
“The reason why this extra chromosome occurs is not known but it can be said with certainty that nothing which either parent did or did not do caused the child to be born with DS,” she adds.
But it is important to understand that DS is not a disease and therefore people with it do not suffer nor are they victims of their condition, she says.
Parents’ reactions to being told their baby has DS are varied and can range from shock, anger, pain, sorrow to denial and guilt.
“It is a sensitive time for parents as we adjust to changed hopes and expectations for a child with DS.
“The problems and challenges you will face with your baby have been faced by other parents and we find that it often helps for them to share with someone who has been there and can fully understand their situation,” she explains.
Assoc Prof Sharifah says PSDM is also available to assist and to support parents with newly diagnosed babies.
“In the urban areas, new parents have more access to such information but it is in rural areas where many may not be aware of what DS is and how their children can develop,” she says.
This is why PSDM conducts many outreach programmes in rural areas to create awareness of what DS is.
These programmes are meant to educate families and the community on DS and measures on how they can take care of children with DS.
“We want everyone to understand there is hope and not to be disheartened that their child has DS. We don’t want them to be left at home thinking that they are ineducable.
“Instead help is available at various government clinics while they can attend special classes in school too,” she adds.
PSDM has also produced a booklet entitled I have a child with Down Syndrome, What next? which is being updated.
Children with DS can grow up to live long and fulfilled lives, provided they are allowed the opportunities they need to develop self help skills and independence.
“They will need extra help, particularly in the beginning, and some will need additional support throughout their lives based on their abilities.
“As parents, we want to encourage each of our children to achieve their full potential while celebrating their gifts and accepting their limitations,” shares Assoc Prof Sharifah.
Previously, it was believed that there were many things that people with DS could not do when in fact they had never been given the opportunity to try.
This is why there is a need for children with DS to have more opportunities in education, training and medical care.
As with any child, learning begins as soon as the baby is born but for a baby with DS, developing specific muscle functions and establishing the foundation for communication is best done under the guidance of experts.
She says PSDM recommends that a baby with DS be enrolled in an early intervention programme (EIP) as soon as possible.
“These programmes are available for babies from about six weeks from various non-governmental organisations (NGOs).
“The aim of an EIP is to develop the basic learning skills and achieve specific developmental milestones in the right order,” she adds.
An individual programme is tailored to meet the needs of the baby and family – it includes physiotherapy, speech therapy and the development of fine and gross motor skills, and social behaviour.
“Vocational institutes should also cater for those who are intellectually disabled and not just for those with physical disabilities as this will ensure our children have a clear career pathway, she adds.
Assoc Prof Sharifah is mother to 12-year old Raja Nadia Raja Mustapha who has DS. Raja Nadia attends a special class in a mainstream school.
She says a special child is a gift from God. “We are a very close-knit family and Raja Nadia is loved by everyone. She is especially close to her father,” says this mother of four other children aged from 14 to 21.