Parent on Down syndrome awareness: They must thrive in same world as the rest of us

DR RADICA MAHASE

With us, not for us is the

theme for Down Syndrome Awareness Day 2023. TT citizens joined the rest of the world in “Rock your socks,” advocating for rights and inclusion of people with Down syndrome on March 21. This week I am happy to share one mother’s journey as she continues to advocate for her son. Rhoda Christopher is

the mother of soon-to-be 12-year-old Pedro.

“We are the Christopher family. I am Rhoda and Pedro’s dad is Anton. He has a younger brother, Benito. Pedro is 11 years old and will be 12 this year. He is a standard three student at St Patrick’s Newtown Boys’ RC School for the past six years. Pedro is a dynamic, fun-loving boy with a passion for life.

He is popular at his school among students and teachers alike and seems to have won the hearts of many. He likes the same things that many boys like such as football, Roblox, Minecraft and watching videos. He is an avid reader, and he loves being on stage.

In the past he has been involved in football, swimming, learning to play pan and gymnastics.

He is currently playing tennis at school, and is involved in dance and drama with Lilliput Children’s Theatre for the past seven years. We provided speech therapy for him from two-and-a-half years and he is currently in occupational therapy.

We have been part of the Down Syndrome Family Network (DSFN) since its inception. They have given him several opportunities in the past such as the visit to the past commissioner of police Gary Griffith – he advocated for respect for people with disabilities; at the tenth anniversary celebrations of the DSFN he escorted Sharon Rowley and presented her with a token; and at the 2022 Christmas dinner he led the opening prayer.

Before the pandemic, he was active at church and received his First Communion with other neurotypical children. He assisted in the collection and procession with gifts several times.

We are also involved in Bethesda for Persons with Disabilities, an NGO that serves not just people with disabilities but also their caregivers.

The biggest challenge we have faced with Pedro is in the area of education. In the year he was turning five, we applied to four schools and they all turned us down. In the following year, we re-applied to the same four and two others. All schools were in our catchment area. The responses from five other schools ranged from he is on a waiting list (last place), to straight refusals. One principal even told a school supervisor that it was because he has Down syndrome, and another told us they took children whose parents work in the area. The school furthest from us accepted him.

While there, he had no aide until the end of his repeat of first year. The person sent was as an on-the-job (trainee) and during the pandemic, her contract ended and he had no aide when school reopened.

It has been one year since and he is still without an aide. He struggles in the classroom because he needs someone to help him along.

His teacher this year is awesome, but it is a class with 26 students and that would prove a challenge for her. The Student Support Services Division (SSSD), Ministry of Education, is quite aware of the situation.

At the beginning of the academic year, aides were sent to the other children but not to Pedro. Someone told me that they would prioritise students who are in the system long but children with a shorter time have gotten aides and a child who entered in the same year as Pedro has a permanent appointed aide.

As a result, afternoons and weekends are filled with catch-up activities such as writing notes that we barely have time to study.

We are constantly in catch-up mode. Study time is while we make our 1km walk to school in the morning since it is the only time he has.

While it appears that things are in motion to have him repeat standard three, I am totally against this for several reasons such as Pedro’s age, the psychological impact of him repeating for the third time. His brother is also in standard three and would move on without him. Research has shown that repeating a year has no significant effect on a child’s academic progress.

I guess God told me before he was born that we would have a special child. I was about five months pregnant, and we were on Wrightson Road. I turned to Anton and asked, “What would we do if we had a special child with something like Down syndrome?” His response was, “What we will do, not take care of it?”

I never did any screening and did not even know the gender of my first child. When Pedro was born, he was discharged before me. One week later, I had to take him to the A&E and he spent 17 days in the hospital. It was suggested that he might have DS, but they were not certain. One month later we took him to a private doctor but even then, it still was not certain. We went to a specialist as well and she suggested that we had him tested – his diagnosis did not come until he was five months old. He had a heart murmur and had non-invasive surgery at Mt Hope when he was two. Now there are no signs of any condition.

Despite his diagnosis, we have never treated Pedro as if he was different or “less.” He went to a regular daycare, preschool and now a primary school. We have raised him to be as independent as he can be. He can prepare small meals for himself such as sandwiches, chocolate milk. He can load the machine to wash, iron clothes, sweep, mop. We are ever cognisant of challenges he may face and would give him tools to help him along such as “when things get hard, we push and finish it.” I help him with homework, create visual aides and other tools to help him revise his work. It is quite clear that with the necessary support he can be on par with the other students of his class.

He wants to attend St Mary’s College and to become a priest. If this is what he wants, it is what we want for him. We want him to grow up to be a productive citizen, an example to others and most of all, to be happy. There are no limits to what he can achieve. Our goal is to present as many opportunities for him to find his niche and become the best Pedro that he can become.

We do not see our son as disabled. The same way we dream for our neurotypical son, we do for Pedro. Give your child opportunities to reveal their potential. Don’t treat them different from the way you would if they did not have Down syndrome. We live as a community so have a strong support network. If you have not joined the Down Syndrome Family Network yet, do so. The parents in the group have children at many stages and can offer a lot of support to you.

To other parents, our children are not charity cases. They have the same rights as your children. Teach your child how to reach out and be a friend. Special schools may be necessary for some children but not everyone. Not all disabilities look the same and all people with disabilities should not be thrown into the same box. Take the time to see the person before you look at the disability. Remember, there is no special world for our children to live and so they must thrive in the same world as the rest of us. A shift in approach by the rest of society can make a difference in their lives.”

Radica Mahase is the founder/director of Support Autism T&T