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Friday, July 25, 2025

What to Expect When Raising a Child With Down Syndrome

by

The heakth Plus Mag
1957 days ago
20200319

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.


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