Every year World Down Syndrome Day is celebrated on 21 March. This global awareness event helps to spread the word on and celebrate those of us who live with Down Syndrome. Locally, Mrs. Helen Humphrey, the woman who started the National Association of Down Syndrome is one of those who for many years has been an advocate for the Down Syndrome community.
As the grandmother of a Down syndrome child Rebecca, born to Joanna and Barry Ferreira in 1985, Helen recognised the lack of information available and that there were limited resources to provide opportunities for Down syndrome persons so that they could live a relatively ‘normal’ life in spite of their circumstances. The Health Plus team had the opportunity to chat with Mrs Humphrey and learn about her experience as a caregiver of a Down syndrome child and more so to take away some key lessons that other parents can consider when bringing up a child with this diagnosis.
Tell us about your granddaughter’s Down syndrome diagnosis?
When my granddaughter Rebecca Ferreira was born in those days, delivered by Nurse Stanley, we had very little knowledge of what she had. Even the nurses looked at each other and they didn’t know what. We didn’t have anyone to call but all we knew is that we would have to learn whatever we could have. The Doctor then explained that Rebecca was born prematurely, was jaundiced, had Down syndrome, two holes and a faulty valve in her tiny heart. To survive she needed open-heart surgery.
What were your main fears and concerns when you learned of this diagnosis?
We were terrified that we would have lost “Becky” (as she is fondly called). Today she is 43-years-old and with the help of many, she grew up fine. Today she is a bit overweight as she developed preliminary hypertension but she is still very happy. She was like my last child as her mother lives away.
How did you manage your granddaughter’s needs and balance that with your own schedule?
At the time we took her everywhere. People in those days were very ashamed of Down Syndrome children but we dressed her cute and took her around. We attended many functions, treated her just like “normal” children and ensured that she took all her medication. With our trust and faith in God everything turned out to be just fine.
Do you feel like support groups or parenting groups are helpful or beneficial?
These types of groups are very important because information is necessary and there wasn’t much of that going around in my time really. I opened a school that was called ‘Something Special school’ and also I started a Special Emergency fund, to help give financial support to parents. In fact I oftentimes met with new parents of Down Syndrome children and I would carry along Becky so that they can see all hope isn’t lost. Twenty years ago I joined Immortelle school as they were trying to meet the same goal I was with my school. It’s important for the parents to teach the children basic house skills so they can help at home and learn responsibility.
Were there particular elements of parenting your grandchild that was stressful?
Sometimes she would get in a mood and I couldn’t always explain things completely to her. If she had a fixation on something, it would be hard to change her mind. Regardless, we treated her as a normal child and she was always a joy in our life.
What tips can you give other parents about meeting with professionals and providers?
Mothers should get involved in the seminars and functions that the DS Family network has. I don’t think we have capabilities.
What advice do you have for parents with newly diagnosed children?
Get in touch right away with the Down Syndrome Family Network and Glen Niles as they have a lot of useful information that can help you. Do not panic, love your child. If your child needs special attention or assistance, reach out to the authorities and request the help you need. Do not be afraid to ask for help.
What more can be done to help children with Down Syndrome?
I’ve been fighting and so has Mr. Glen Niles of Down Syndrome Family Network for more inclusion for Down Syndrome in our society. Including them to get jobs, they feel very proud when they are working and getting a salary.