Special grandparenting for a grandchild with special needs

A grandchild is one of God’s most wonderful gifts. But what if that gift isn’t the "perfect" bundle of joy you expected?

A child born with physical or mental handicaps takes grandparenting to a new dimension. Different needs and challenges arise – along with a new set of blessings.

Be accepting

How should Grandma and Grandpa respond, and how can they help their child and grandchild?

The first step is acceptance. Family members often experience grief and denial when a child is born with disabilities.

"You struggle with ‘what might have been,’ " Keith Brown says. Keith and his wife, April, have a profoundly handicapped nine-year-old daughter, Macy.

"It helps that her grandparents accept her as she is and love her for who she is," says April.

Tracy Karstetter has 10-year-old twin boys – one with Down syndrome and one with cerebral palsy. She says their grandparents didn’t regard the boys’ birth as a tragedy but gave immediate love and acceptance. The grandparents’ positive attitude made it easier for Tracy to face her grief.

"You do grieve at first," she says. "You look at your child and think, He’ll never be able to go to college. He’ll never get married and have children. He’ll never have a ‘normal’ life. But then you realize that he will also miss out on a lot of the heartaches that ‘normal’ kids have. Your life takes on a dimension other people miss. You realize that God entrusted you with this special child – and what a privilege that is!"

Be fearless

Even though special needs children are a blessing, their daily care is exhausting and, at times, overwhelming. Grandparents can play a part in easing that load.

"It is so hard for my daughter to load up Macy’s wheelchair every time she wants to go somewhere," says Carol Daugherty, Macy’s grandmother. "April just needs some time away from all the pressures. I try to help whenever I can."

Sometimes that means overcoming fears about unfamiliar things, like therapy, injections and feeding tubes. Macy’s handicaps prevented her from getting enough nutrition by mouth. The family learned to give her formula through a tube leading directly into her stomach.

"My mom was shaking when she first fed Macy through the feeding tube," April says. "Now it’s nothing to her. She does it without a second thought."

Knowing that someone else feels comfortable with the child’s care frees parents to relax and recharge – a crucial need when dealing with medically fragile children.

Be ready

Sometimes welcome help arrives in the form of a grandparent taxi service. Richard and Pat Smith have a deaf nine-year-old grandson, Justin. Taking him to therapy and appointments cemented strong bonds between grandparents and grandchild, helping them develop a close relationship. At the same time, the Smiths provided much-needed help to their daughter and son-in-law, who have several other children at home.

The Smiths feel that time is one of the best gifts they have to offer. "It takes patience because special needs children take longer to do basic things," Pat says. "Often they get left behind by the other kids. Grandparents can take time with them."

Be available

Grandparents can also be a blessing to the other children in the family. Often, both sets of Macy’s grandparents step in to help with her two siblings when Macy requires extended hospital stays. Having Grandma and Grandpa there to attend ball games, fix supper and lend a hand with homework helps smooth the difficult path faced by siblings of children with disabilities. Being available for them, too, can also help prevent resentment and jealousy.

"It’s a danger to be so consumed with the special needs child that everything and everyone else is neglected," Carol says.

The Smiths agreed that appearing to show favouritism is a problem.

"These [special needs] kids are so loving and so quick to bond," Richard says. "We have a close relationship with Justin. We have to be careful to let the others know we love them, too."

The most important part

Accepting, overcoming fear, being ready to help when needed and being there for the other siblings are important jobs for grandparents. The most important part, though, is love.

"We love Macy because she’s Macy," Carol says. "She’s been a great joy to our whole family."

Grandparents of other special needs kids say the same thing. They are still one of God’s best gifts. They just come in a different sort of wrapping paper.