November 28, 2017

A New World for MacKenzie

Al, Arthur, Nancy & MacKenzie with cutout of Alex.

When the phone rings late at night, how often does it bring good news? Al and Nancy’s late night call delivered a chilling message: the amniocentesis showed that their third child would be born with Down syndrome!

Al and Nancy’s initial reactions were vastly divergent. Nancy, who grew up in a town with a traditional State Hospital, envisioned her child being institutionalized. Conversely, Al received the news as if he heard the baby would be left-handed: it was simply one of her various characteristics.

Nervous to take on the world, Al and Nancy resolved to raise their child to live a life without limits. This meant not shielding their child from reality, but encouraging her to participate in life as much as possible.

The child that rocked Al and Nancy’s world is MacKenzie.

Pessimists predicted MacKenzie would never be able to jump rope, but Al and Nancy are determined to break down the walls of isolation. They encouraged MacKenzie to try jump rope.

First, MacKenzie held the rope. Then, she learned to turn the rope. Later, with the rope on the ground, MacKenzie practiced stepping back and forth over the rope. Now, MacKenzie is jumping rope exuberantly—and often!

Al and Nancy are alert to people who would cripple MacKenzie’s abilities by labeling, limiting, or helping too much. They see MacKenzie’s potential to live a without limits. Al and Nancy are constantly encouraging MacKenzie to try new things and work towards new goals, such as jumping rope. They will not tolerate programs that limit MacKenzie, insisting on mainstream programs with support for her unique needs.

Today, MacKenzie is an outgoing 15 year old, who is comfortable in her own skin and happily involved on the cheerleading squad. MacKenzie regularly practices with the squad and performs in the game time cheers, as she masters them. She was recently chosen as part of the homecoming court.

Through the 15 year adventure of raising a child with Down syndrome, Al and Nancy have developed a vision of the world they would like to see: a world where a diagnosis doesn’t define a person.

Do you know a family living with an adult or child with developmental disabilities including autism, epilepsy, intellectual disability, Down syndrome or cerebral palsy?  UCP Family Respite UCP Family Respite is a great resource for families raising a child with developmental disabilities. Respite care is a proven prevention technique that not only protects a caregiver’s health and well-being, but prevents out-of-home placements and reduces the risk of abuse or neglect. 

 

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