When one mother was asked what she loved most about her 19-year-old son, who is one of the many people with Down syndrome, her response was heart felt and profound. “Everything – every single chromosome. I wouldn’t change anything – unless he wanted to, and I don’t know that he does. He seems to be comfortable in his skin,” she began. “I do admire that fact that he knows that he has an intellectual disability, and has some appreciation that it is not something the rest of us wish for. He faces many challenges in quite unremarkable, everyday activities. And yet every single day, he faces a world in which he has to work very hard to live an ordinary life – harder than we have ever had to – and he is prepared to put that effort in, every single day. We think he’s a bit of a hero. He does more than just live – he lights up our world.” Her words serve as inspiration for parents preparing themselves to raise a Down syndrome child.
People who are afflicted with Down syndrome encounter many physical challenges that others do not. Their motor skill development is slow, so they will learn to breastfeed, roll over, walk and talk, as well as teeth later than other children their age. This can be frustrating for both the Down syndrome child and the parents who are repeatedly confronted with their own mistaken expectations. Another physical risk is, of course, the associated health problems. Many babies with Down syndrome undergo heart, ear and eye surgeries before one year of age. There are later risks of epilepsy, obesity, heart disease, ear infections, thyroid disease, throat infections, pneumonia and osteoarthritis.
During school age, people with Down syndrome need constant attention and intervention in their daily tasks. Children with the disability will require the constant attention that a Down syndrome baby receives until they are typically six years of age. However, as the child ages, he or she will learn to understand more about the physical, mental and emotional changes that are taking place. Motor skills are still a challenge during these years since sudden growth spurts make the Down syndrome child feel like a stranger in his or her own body at times. As puberty hits, they will need to be taught how to care for themselves and the changes they are undergoing.
The National Down Syndrome Society website, at www.ndss.org, offers state-by-state resources for people with Down syndrome and their parents. Whether it’s placement for educational services, enrichment programs, a weekly Down syndrome support group, links to occupational therapists or help finding a specialized, trusted doctor, this site has it all. While it may take those with Down syndrome a little bit longer to reach their milestones, it will be much more appreciated and celebrated. Perhaps they know something about life based on their experiences that the rest of the world forgets to slow down and consider.