– Keys to successfully managing kids with Down syndrome

CHARLES Quail can still remember his frantic efforts of trying to save his newborn son Caleb who was born with an anorectal malformation. The boy responded very well to the corrective surgery that was done in Miami, and even as he copes with a mild case of Down syndrome today, two years later, nothing becomes too difficult for Charles to handle.

His deep love for his son makes all of the hard work seem like nothing. He described little Caleb as his heartbeat, perhaps because of the difficulties that they experienced together from the day he was born.

“What we went through from day one; it was a rush to save his life. It’s a very close attachment,” Charles shared in an interview with Pepperpot Magazine a few days ago, adding, “Every day is a different day, a learning day, but it’s not as bad as people make it out to be.”

Charles has seen from experience that with the right kind of help and people around you, caring for a child with Down syndrome becomes much easier and manageable. “Nothing is a challenge for me when it comes to him,” he expressed.

World Down Syndrome Day on March 21 is a global awareness day which has been observed by the United Nations since 2012. As the observance gets closer, Charles wants to remind parents with children who have Down syndrome that there are certain qualities that they must have to succeed. “You need a lot of patience and a lot of education, and love. It also takes a lot of time and dedication. Inform yourself, educate yourself; also take the time to educate your friends and family.”

Seeking answers and support
As for Nadia Sugrim, she prays every day and asks for a miracle for her only baby, four-year-old Declan Munro, who was born with two holes in his heart and has been diagnosed with Down syndrome. The heart defects affect Declan’s development; he must be in and out of the hospital for oxygen.

Nadia continues to be emotionally, physically, and financially exhausted as she and her family care for Declan. Even though she was saddened and even depressed when she learned that her son had Down syndrome, she cannot help but notice the amount of joy that he has brought to their lives. “I was fast moving; always on the move.

Declan slowed me down to a place where I can enjoy life a little more,” she shared.

Declan needs to do surgery before he is 10 years old, or there’s a strong possibility that he will lose his life. The family is currently waiting on the Georgetown Public Hospital Corporation which is expected to facilitate the surgery. Even if the surgery is done, though, Nadia must still live with the reality of Declan’s life expectancy.

“I’ve learned to accept the fact that a child with Down syndrome life expectancy is probably 30, 40 or less. Even though some days you cry, you still have to try your best and see what you can do to help your child. I pray and ask for a miracle,” she expressed.

So far, she’s found that speaking with other parents helps her to cope with the stress of it all. As for dealing with the stigma attached to children with Down syndrome, Nadia said she doesn’t allow this to bother her anymore. “People tend to look at the child differently. Sometimes you’re in certain places and you’re wondering if you should be there. Now I don’t let that bother me because my child has to live like any other child with special needs.”

Unique Personalities
Reeza Reasha Morgan is an Occupational Therapist at the Ptolemy Reid Rehabilitation Centre. She gets to work with individuals with Down syndrome to improve their participation and independence in everyday activities.

In light of World Down Syndrome Day 2023, she shared some pointers that can help the general public when dealing with persons with Down syndrome. “They should be shown the same respect as everyone else,” she commented, adding, “Refer to them as a person with Down syndrome or a person with Down syndrome. Do not use ‘suffer from’, ‘a victim of’ or ‘afflicted by’ Down syndrome to address them.”

She continued: “Use plain language and always speak directly to a person with Down syndrome and be sure to give them time to respond. They are very unique with their personalities, strengths and support needs.”

Meanwhile, Reeza explained that Down syndrome, also referred to as Trisomy 21, is a genetic disorder caused when abnormal cell division results in an extra full or partial copy of Chromosome 21. Chromosomes are small packages of genes in the body that determine how a baby’s body forms and functions as it grows during pregnancy and after birth.

Children with Down syndrome have mild cognitive impairments (short attention span, problems thinking and learning), delayed speech, delayed language and delayed short-term memory.

This year’s theme is, “With Us For Us” and the main focus is on a human rights-based approach to disability — the right to be treated fairly and have the same opportunities as everyone else and the freedom for people to make their own choices.