When a child falls sick, not only the child suffers. The parents also share the pain. The pain worsens when a parent realises that their child will do life with a disability through no fault of their own.
Since these parents crave that their children lead meaningful and fulfilled lives, they grow more sensitive to society’s assessment of their children. They do not want society to regard their child as invalid. So when you find yourself next to such a parent, be wary of what you say about their kids.
In this article, you will find insightful ways of relating with parents of children living with Down’s Syndrome.
The real cause of this biological defect has evaded experts for years until 1866. That year, English physician, John Langdon Down’s, issued a proper analysis of a person with Down’s syndrome. This groundbreaking discovery crowned him as father of the syndrome.
Down’s syndrome is an ailment in which a person has an extra chromosome. Chromosomes are extra packages of genes in the body. These chromosomes determine how a baby’s body forms and functions during pregnancy and after childbirth.
Naturally, a baby is born with 46 chromosomes. However, babies diagnosed with Down’s syndrome come with an extra copy, chromosome 21. They grow up with intellectual disabilities that skews their long-term memory.
Their physical development is also skewed as they grow slowly compared to their age mates. Not only are they often shorter than their peers, but they also develop chronic health complications such as heart defects. More so, Down’s syndrome is not the prerogative of one race. It cuts across race or ethnicity and every sociological divide we can think of.
Also, children with Down’s syndrome differ from the others in terms of physique. Some typical features include:
- Smaller head
- Shorter neck
- Protruding tongue
- Upward slanting eyelids (palpebral fissures)
- Smaller ears
- Poor muscle tone
- Broad, short hands with creases in the palm
- Shorter fingers and small feet
- Excessive flexibility
- Tiny white spots on the coloured part of the eye (iris) known as Brushfield’s spot
- Shorter height
- Flattened face
The exact cause of Down’s syndrome remains elusive but studies have established that women aged 35 and above have a higher possibility of birthing babies with Down’s syndrome. Notwithstanding, it is still common among younger women who have a higher fertility rate.
As the children grow into adulthood, they can successfully live a normal life. But that will come at a cost. They will permanently need guidance in certain aspects of life such as birth control, money management and how to control their emotions. It is also vital that they are sent to high schools and colleges that are tailored to fit their intellectual profile. That said, let’s get down to business.
Five Things You Must Never Say to Parents of Down’s Syndrome Kid
It is natural and admirable to be empathetic to parents of Down’s syndrome kids. While your intention isn’t in question, your actions can be misread. In Shari Bottego’s words, president of Down’s Syndrome Association of Central New York, “The words that people use can help individuals lead complete and enriching lives.” The words you use have a profound impact, hence the need for caution. Next time you are around such parents, never use these words.
- “I’m so sorry.”
This phrase reeks of victimhood. The world already tags Down’s Syndrome kids as victims and their parents know this. So, don’t add to that pile. These parents have embraced their kids for who they are and are determined to give them a better life. Therefore, such a statement will come off as offensive. A better statement would be, “Congratulations, your child is doing great.” Say it and mean it.
- “You are lucky you have a normal kid too.”
This comparison subtly tells the parent that something is wrong with that particular. It makes one child appear abnormal and the others normal. According to Marie Hartwell-Walker, a psychologist and author of the e-book Tending the Family Heart When the Children Have Special Needs, this kind of statement negates the child’s ability.
In her words, “Most families embrace their child and find meaning in their relationship and experience. They usually welcome support, but they don’t need to debate family and friends who have an idea of the ‘right’ way to think about it.”
- “Down’s Kid”
Referring to a child diagnosed with Down’s syndrome as “Down’s kid” is grossly inappropriate and insulting to the parents. It is proper to address the child by his/her name rather than their medical condition. Shari Bottego says, “I guess this is the first thing you should never say to a mother.”
- “What’s wrong with him/her?”
Asking such questions especially in the child’s presence will irk the parent. It’s okay to ask about the child’s health, especially if you are encountering the situation for the first time.
However, the place and manner of speech matter. Such questions will leave the child questioning their normalcy. Alternatively, mention the positives about the child. Something like “He has such a beautiful smile”, “That shirt you have on really complements your complexion.” Statements like these will make the parent truly proud of their child. Since you have exuded behaviour in the kid’s best interest, their parents may openly tell you more about the child.
If you must broach the issue of the child’s health status, do it with discretion using words that will not irritated or hurt.
Silence can hurt just as much as the wrong words. This is not to say the parents of Down’s Syndrome kids are critical of your actions or inactions. Having known their child’s health status, it is best to reach out to them in love instead of staying mute. Your silence can be interpreted as insensitivity.
Parents do not see their Down’s kids as victims or abnormal. So, ensure that your conversation doesn’t portray their children that way. The next time you find yourself next to a child with Down’s, ensure you treat them as children with unique abilities and talents.