3rd March every year is marked as World Hearing Day.
Hearing loss is one of the set backs that may affect a person with Down syndrome, so I’ll be including it in the ongoing sensitization by the Engraced Ones as we count down to the celebration of World Down syndrome day 2024.
The theme for this year’s World Hearing Day is, “Changing mindsets: Let’s make ear and hearing care a reality for all!”
My daughter had wax in her ears for 12 years! We visited several Otolaryngologists in Nigeria but didn’t get results. I think they had a very unfriendly approach and couldn’t get my daughter to respond appropriately. There was also the problem of obsolete equipment. On one occasion, the Otolaryngologist advised me to stop worrying because the child could hear.
Well, i knew there was a problem!
This child was born with ear canals so narrow that neither i nor her doctors had been able to take off wax from her ears from birth (she was 8 years old at the time). Also, she was limited in speech, which made it impossible for her to complain if anything went wrong with her ears. Routine hearing assessment is mandatory for people with her condition because there is a high rate of hearing impairment as a result of weakened immunity and an unusually narrow ear canal.
A few weeks ago, we took her for another assessment (4 years after the ordeal i narrated earlier). It took about 3 weeks to have the wax of 12 years cleaned out! Of course, state of the art equipment was used.
The implication of this is that some children and adults with DS and some other conditions could develop hearing problems because we lack the requisite gadgets to make ear and hearing care a reality for all!
What happens to so many children born different who may not have access to the kind of support my child got?
By WHO estimates, about 80% of ear and hearing needs remain unmet.
Sadly, societal misperceptions and stigmatization are implicated as reasons why more people than necessary experience hearing loss.
What then should be done to improve access to hearing aids and other measures that can prevent hearing loss or make its management more holistic?
Today, we call on the government to invest in this aspect of our health. To parents, we plead with you to seek a second opinion if need be as we keep walking towards a society where deafness is reduced to the barest minimum.
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.
Imbecile
Differently-abled
