When Mary Neary's daughter, Jackie, first went back to work, Neary and her husband pitched in to babysit their grandson Joey. The boy's weepy eyes struck the New York City grandmother. "He has such sad eyes!," she said to her husband.
"Oh, he just misses his mom," he responded.
When their grandson began losing motor skills, the tune changed for Mary's husband. The Nearys knew something was wrong. At 18 months, Joey was diagnosed with epilepsy and autism spectrum disorder.
"My first reaction was anger," said Neary. "I was angry at God, angry at my friends with perfect grandchildren… angry at everyone."
But as she got to know her grandson in a new way, Neary's negative emotions transformed into positive action. "We started taking Joey everywhere again," she said, "to family functions, to restaurants. Joey taught us about love… and I am so grateful."
No sooner is a grandchild's arrival announced than grandparents begin planning in earnest, visions of slurping down ice cream and thumbing through Goodnight Moon flooding their minds. Those dreams don't include physical therapy, injections, or holding a child who isn’t able to smile. Yet, Joey is one of nine million children in the U.S. who has a special health-care need.
Yes, But What Does It Mean?
The term special needs can, at first, be intimidating. For one thing, the words can refer to any number of disabilities. In its simplest form, the phrase describes limitations that affect a child’s ability to function in various settings.
Multiple disabilities fall under the umbrella term special needs. These may include emotional or behavioral disabilities (attention deficit hyperactivity disorder (ADHD), Tourette syndrome, and obsessive-compulsive disorder, among others); physical disabilities (seeing/hearing impairment, epilepsy, and diabetes, among others); and developmental disabilities (autism and Down syndrome, among others).
Love Is Love... Is Love
The words special needs can give way to a host of worries that paralyze loved ones. Simple interactions with a grandchild with special needs can generate questions: Am I acting right? What can we do together? What should I say? Vicki Pannaccione, Ph.D., a clinical child psychologist, offers one rule of thumb to grandparents forming relationships with grandchildren with special needs: “These children are still children. Your grandchild has the same special need as any other child — love.”
Grandparenting a child with special needs requires no extraordinary, above-and-beyond skill. Love your grandchild. Take an interest in your grandchild's interests. Be a friend. Look beyond whatever challenges he or she has to see a child with likes and dislikes, accomplishments, and joys — the same as any other child. Don't let your worries keep you from getting close to your grandchild, urges Don Meyer, director of the Sibling Support Project and a founder of SEFAM (Supporting Extended Family Members) at the University of Washington.
What Can We Do Together?
There's no magic formula for finding the “right” activity to share with a grandchild with special needs, says Thomas H. Pinkstaff, M.D., a pediatrician serving on the Kentucky Autism Training Center Board. Do what you'd do with any child — find out what they would like to participate in.
Look for play in which children of varying ages and abilities can engage. Gardening is a perfect example. Dropping seeds into soil, watering, weeding, picking vegetables, arranging flowers in vases — perhaps with your help — are activities every child can enjoy.
What's key is pinpointing your grandchild’s abilities and challenges. While a grandchild with Asperger syndrome may dread sports that involve social interaction — lots of “high-fiving” and chatter among teammates — he may have the ideal temperament for solo sports such as bowling, cross-country running, or skating. A grandchild with ADHD may struggle at games rife with rules and restrictions, but thrive in open-ended activities such as painting.
Small Adjustments, Big Changes
If your grandchild can’t be on the school swim team, this doesn’t mean she can’t be on any swim team. Jackie Ceonzo, founder of the New York City-based Special Needs Activity Center for Kids (SNACK) says minor modifications make more activities available to children who are challenged. At SNACK, instead of one adult coach overseeing a team of 20 swimmers, each adult is assigned one swimmer.
Such modifications may include securing the proper equipment or environment, allowing for physical restrictions and developmental delays, or changing the rules or length of activity to mesh with behavioral limitations.
What's Familiar Will Endear Us
Gaining familiarity with a grandchild's limitations will make it easier to love and accept them, says Meyer. If distance makes spending more time together difficult, consider volunteering with local projects that benefit children facing challenges similar to those of your grandchild. “You'll not only feel connected by doing something good," says Meyer, "you'll improve your comfort level, which will significantly enhance the time you'll spend with your grandchild.”
You may also consider attending workshops specially designed for grandparents with a grandchild with special needs. "Or go to a national conference," suggests Meyer. "You’ll meet other people living the same experience — of loving a child with challenges."
Next: Special Needs, Part 2 — Spinning the Mobile
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