Beyond mismatched socks: mums on raising children with Down’s Syndrome

Marilyn Agius and Joeanna Xerri want you to know that although their children have Down’s Syndrome, they can do what other children do – it just might take them a little longer to learn how.

Marilyn’s daughter, Lara, who’s two and a half has Down’s Syndrome, but Marilyn doesn’t want her to be treated any differently or be discriminated against. Joeanna, whose son is now 15-years-old also said that although her son has Down’s Syndrome, he still enjoys life to the full.

Down’s Syndrome is a genetic disorder that occurs when for an unexplained reason the child has 47 chromosomes instead of 46. It is typically associated with physical growth delays, characteristic facial features and mild to moderate intellectual disability. Approximately five to seven children with Down’s Syndrome are born in Malta each year.

Lara is two and a half years old and gets along very well with her brother Jake

The two mothers, Joeanna and Marilyn only learned that their children had Down’s Syndrome after they were born.

Both said that news that their baby had Down’s Syndrome came as a shock to the families since they felt they were not prepared for what it meant and what having a child with the syndrome would involve.

“To be honest, it was harder for me to accept than it was for my husband,” Marilyn said. “Because of severe complications in Lara’s health, I first held her in my arms 10 days after she was born, and it was then that I truly bonded with her for the first time.”

It was then that Marilyn says she accepted the fact that her daughter had Down’s Syndrome.

Although the situation is completely new when the child is born, both parents said that their children lead a normal life.

Marilyn’s daughter, Lara, is now two and a half years old, and now has a younger brother, Jake, with whom she gets along very well.

“There are obvious differences because Lara takes longer to learn and understand things,” she said. “Children with Down’s Syndrome take longer than other children in whatever they do, but they do learn and understand everything that goes on around them.”

Joeanna says Karl is more dependent on her than his younger sister, but her biggest hope is that he becomes more independent as he gets older

Joeanna also said that her son Karl leads a normal teenage life.

“Karl is very calm, but can be stubborn. He likes his computer, enjoys swimming and recently started aerobics. He also loves going to school because he loves to meet his friends,” Joeanna said.

She said that while Karl is more dependent on her than his younger sister, her biggest hope is that Karl becomes more independent as he gets older.

“I hope that in the future, Karl can become more independent and eventually would be able to have his own job, and lead life like any other adult.”

Joeanna takes Karl to therapy to further help him lead a better and more independent life. Marilyn, who also takes Lara to therapy, said she was extremely grateful for the assistance she received, including free occupational, speech and physio therapy for Lara. The government’s Child Development Assistance Unit also sends an early intervention teacher to the Agius household to help Lara with basic exercises and fine motor skills.

“The level of assistance and attention paid to Lara is out of this world,” Marilyn said. “They even provide us with a weekly allowance and also offered us free nappies when Lara was one.”

One of the most vital tools in Lara’s development is her interaction with other children. If it weren’t for the policy of inclusion, children with Down’s Syndrome would miss out on a crucial learning opportunity.

“Being in the same class with other children, children like Lara will be able to learn from them and will therefore develop the necessary skills much faster than they would if they were not exposed to other children with normal skills,” Marilyn said.

Both parents said they were very pleased that their children were not victims of any stigmatisation or prejudice, and actually feel that children with Down’s Syndrome in Malta are generally loved and treasured.

“Karl brought us all together as a family. He makes us all happy and united us much more. I wouldn’t change a thing,” Joeanna said.

Joeanna said that nowadays, discrimination against people with Down’s Syndrome has been drastically reduced, yet some elderly people still had a hard time understanding the issue.

Agreeing, Marilyn said that she felt people still did not understand Down’s Syndrome, asking for example, why Lara does not yet talk at two and a half years, or why she hasn’t grown so much.

If there is one thing Marilyn hates it is having to get Lara her own yellow disability card.

“Doing that felt as though I was admitting Lara was disabled, which she is, but she is so much more than a label,” she said. “Children with Down’s Syndrome can do what other children do and can understand when people talk to them, it just might take them a little longer.”

Thomas, 22, leads an independent life and is an inspiration for mothers of children with Down’s Syndrome

In fact, Mary Rose Buttiegieg’s son, Thomas, who is now 22, is an inspiration for mothers of children with Down’s Syndrome. Mary Rose said that although they found many hurdles, Thomas now leads an independent life.

She said that while they didn’t initially find the right support at post-secondary level,  many people were willing to help, and an office assistance programme was introduced, teaching work skills to people with disabilities. Through this programme, Thomas learnt skills which helped him to adapt to the workforce, and now has been working as a front office assistant for three years.

“Although it sometimes takes longer, Thomas can do everything any other adult can,” Mary Rose said. “Working makes him independent. He gets the bus by himself and earns his own money. Everyone has the right to learn and work.”