Every parent grieves upon hearing the diagnoses. Mostly out of fear for the unknown, but also how their precious child might be perceived by the outside world. Families of children with Down Syndrome are faced with a lifetime of challenges.
2 Days ago, on September 22nd, electronics giant JB Hi-Fi banned a man with Down Syndrome from entering the store after being mistaken for a shoplifter, who also had Down Syndrome. The story created an uproar. Some readers were outraged, calling the incident “a blatant act of discrimination”. Others merely scoffed, and described it as “a simple case of mistaken identity”.
Whether it was discrimination or a simple error, it’s clear that we sometimes look at things we do not understand and judge them incorrectly. Dan Brown, in his book The Lost Symbol, wrote: “We all fear what we do not understand. What we fear we judge as evil. What we judge as evil, we attempt to control. And what we cannot control. . . we attack”. After this unfortunate and avoidable incident, we think we can all benefit from education surrounding Down Syndrome.
Understanding Down syndrome
Down Syndrome is a chromosomal disease, where an entire chromosome is duplicated. People with Down Syndrome have three, rather than two copies of chromosome 21. This additional genetic material alters the course of development and causes the characteristics associated with the syndrome.
There are three types:
- Trisomy 21: There is an extra copy of the 21st chromosome in all cells. This is the most common type and occurs at conception.
- Mosaic Down Syndrome: Most but not all cells have an extra 21st chromosome. This type is relatively rare and occurs sometime after conception when some cellular division has taken place.
- Translocation: An extra copy of the 21st chromosome adheres to another chromosome. This is the rarest form and the only inherited type.
Down Syndrome and Child Development
Down syndrome is the single most common genetic cause of intellectual disability, with around 270 babies born in Australia each year. Children with Down Syndrome are as different from one another as are all children. However, their development is slower than that of most children. Even though they experience cognitive delays, the effect is usually mild to moderate and is by no means indicative of their individual strengths and talent.
There are many trials to raising a child with Down Syndrome, but none so challenging as their increased risk for certain health problems. Some children have stomach problems that affect digestion and elimination. Infections may affect lungs and breathing.
Congenital heart defects, hearing problems, sleep apnea and childhood leukaemia may occur more frequently in children with Down Syndrome. Adults with Down Syndrome are at increased risk of Alzheimer’s disease, thyroid conditions and sleep apnea. However, advances in medicine have rendered most of these health problems treatable. Adults with Down Syndrome are now reaching old age on a regular basis and are commonly living into their 50s, 60s and 70s.
As the life expectancy for people with Down Syndrome is on the increase, adults with Down Syndrome, along with their families and caregivers, need to prepare and anticipate for growing older, so they can set the stage for successful aging. If you are the spouse, parent or grandparent of an individual with Down Syndrome, there is an even greater need to consider your family’s estate planning needs.
In 2012 Jim Faber, president of the National Down Syndrome Congress, reminded us that with support and encouragement, our friends and family with Down Syndrome can live very fulfilling lives.
This incident at JB HI-FI has highlighted a lack of social understanding and knowledge surrounding people with disabilities. While this situation should never have occurred, perhaps this is an opportunity to start the conversation, and increase awareness of medical conditions which require special care and understanding.