WHAT WORDS ARE COMMONLY USED TO DESCRIBE PEOPLE PEOPLE WHO LIVE WITH DOWN SYNDROME?
This is one conversation I feel very emotional talking about. Several times I didn’t just hear people say hurtful words about the children in my care, I see it in their eyes.
Words are powerful. They can kill or heal. If you use the words below, you’ll be destroying lives. Please do no label people with Down syndrome with these words;
Imbecile
Retard
Stupid
Idiots
Morons
McVay, an inclusion specialist said, ‘The best name to call someone is the name he or she was born with.”
Socially accepted names for people with disability could be;
Differently-abled
Neurodivergent
Also, DS is not something people suffer from or are afflicted with. In my opinion, they are simply ENGRACED.
My call is for you to see the individual and not put DS or any other condition forward.
This is a question most new special parents ask. The first thing I’ll say is, learn about the condition! Knowledge demystifies things and provides solutions. Unfortunately, some parents just want schools or therapists to do some magic and change their child. Listen up, friends, special needs intervention is a PROCESS which we need to be part of.
Patience is another virtue we need when dealing with a child or adult with DS who may be a bit slower than others his age.
Communicate with your child using short and precise language.
Walk them through new experiences by demonstration not merely through instructions.
Practice following routines so they feel more settled.
Make personal notes of his or her progress and seek regular health care from qualified practitioners.
One care strategy we can’t not afford to toy with is early intervention. Sadly, poverty and difficulty in finding qualified help may make this difficult, but please, ensure you seek help for your child dear parents.
Treat them nicely and respectivefully.
Because DS may cause reduced immunity, older and younger people may need extra care to reduce exposure to colds and other infections.
Finally, acknowledge the fact that we do not know it all. Join support groups to gain strength and wisdom from like-mindedd people.
Down syndrome can be detected during pregnancy, especially the 11 and 13 weeks, with a first trimester ultrasound and blood test.
Women in the first trimester may take diagnostics tests like Chorionic villas sampling (CVS). Fluid in the area of the neck, which is often called ‘nuchal fold’, which is higher than the acceptable level, could be an indicator for DS.
There are debates about decisions potential parents should take when DS is suspected.
While some countries prefer to point people towards the option of abortion, others leave it open to concerned families to decide.
Let me place it on record that I didn’t get the chance to make a decision. If I had, even without knowing how wonderful my baby would turn out to be, the decision would have been in favour of life for the unborn child.
Heidi Crowter is a young lady actively advocating for the preservation of DS pregnancies. According to her, the discrimination of people with DS starts from the womb.
Down syndrome affects people mentally, developmentally, physically, emotionally, socially, and financially.
The first thing that may strike you when you see someone with the condition is the face. People with DS often have a characteristic facial appearance. Please see more details in the images attached.
People with Down syndrome are more likely to be overweight than the general population. However, with increased knowledge on diets, noticeable improvement is being made to reduce this tendency.
Other things to look out for are sight and hearing problems, hypothyroidism, gut defects, and, above all, congenital heart defects in babies. Most of these can be managed.
Most people with DS struggle with learning disability. They may have less IQ than expected, which makes education a challenge but not an impossibility.
Developmental delays may affect them cognitively, in speech, and in the attainment of all milestones.
Emotional and social upsets come with discrimination, which is common, especially in Africa.
Down syndrome may affect the individual and his or her parents financially because of the high cost of care (especially in countries where the government does not take responsibility for their care). In some cases, parents spend more time at home providing work than at work.
In all, the quality of life a person with the condition lives is influenced by his environment and the availability of resources to cater to his needs.
World Down Syndrome Day (WDSD) comes up March 21, every year.
It may also interest you to know that WDSD is an Initiative which has the full backing of the UN, Syndrome International and national charity organisations across the world.
This is one of the reasons March is special to us at the Engraced Ones because we are privileged to be part of this global drive towards awareness creation
Why March 21?
October is set aside for DS awareness. However, we can’t resist the temptation to set the ball rolling now. March 21 was specifically chosen for the celebration of people with DS because March is the 3rd month in the year and these unique individuals have a triplication of a certain chromosome. The chromosome in question is chromosome 21.
‘End the Stereotypes’
This year 2024, the theme for the celebration is exciting! End the Stereotypes is a theme that speaks loudly to us as advocates. There are more stereotypes about the condition than the facts. It’s a shame that people tend to see and think about these stereotypes the moment they come across a person who lives with DS. Please put some stereotypes you know in the chat box so we can engage!
Now, you may want to know, what is Down syndrome?
Down Syndrome is a genetic condition where a person is born with an extra chromosome. The differences in the physical and mental disposition we notice in these individuals is because of this extra chromosome.
Please stay with us as we take you through a 21 day journey of demystifying the condition and shattering stereotypes.
I met Karibi through her hubby. The first time I met the couple I noticed the sharp contrast in their appearances and compartment. While Jim seemed cool and calculated, Karibi was obviously jittery and withdrawn.
Jim had a lot to say about his wife. He felt he could no longer relate with her. He felt she was too concerned about their 6 year old son who lives with a condition called Cerebral palsy. He couldn’t remember when last they had a laugh together or just went out for some ice cream or had romantic moments. Hours of interaction revealed that his concerns were actually the least of hers.
Karibi was a beautiful and fashionable lady with high spirits. Anyone who knew her got a dose of her friendliness and confidence. All these changed when Tonye came into their lives. Their son missed all his milestones and seemed unnaturally stiff. After bags of money and several visits to doctors, the child was diagnosed with Cerebral Palsy. Though a common childhood disorder, it is arguably the most expensive congenital condition to manage and affects movement, muscle tone or posture. Cerebral palsy is due to abnormal brain development, often before birth.
It is little wonder that Karibi is on a path of depression following her motherhood journey with her adorable. The rejection she faces from close family and friends, the mental enstrangement she felt from a husband who didn’t understand the pain she felt each time people starred at her and her baby while whispering to their children to stay away from her, was enough to distort her mental health.
In the year 2023, the UN declared ‘Mental health is a universal human right’.
I’m trying to wrap my head around the above statement. Are they mere words or values which should be engrained in the society?
At what point in the history of man did mental health become a ‘global concern?’
Before I continue, lets all be sure we’re on the same page.
‘Mental health includes our emotional, psychological, and social well-being. It affects how we think, feel, and act’ this definition was adopted from Google. From this definition, I dare say mental health are all encompassing and subtle and there is no single cause of it.
There’s nothing as dangerous as a problem that starts without anyone taking note of it.
So I work with a group of women who manage children with special needs. At one point or the other in their interaction with their children they are likely to experience mood swings which may impede on their mental health.
Isn’t health meant to be for all? If mental health is a functional human right why wasn’t there anyone to observe the distress, isolation, absence of self – care, sadness and hopelessness of victims like Karibi before she experienced a total mental breakdown?
It is hoped that with increase in these conversations and with focus on the rights of Persons with mental health issues, there would be a decline in the statistics of victims of depression and related conditions.
Imbecile
Differently-abled
