Special Needs III: A Different Kind of Grandparenting

Grandparents of a child with special needs must focus on learning about the child's condition

By Jodi M. Webb

Grandparents-to-be, like parents-to-be, create an image of a "perfect child" in their imagination. So when one finds out that a grandchild will have special needs, it is often difficult to reconcile that reality with the fantasy. Often a grandparent will simply ignore the issue, pretending nothing is wrong even after a diagnosis is made, says Vicki Panaccione, founder of the Better Parenting Institute.

But eventually all grandparents of children with special needs must come around and acknowledge their new situation. When they do, they can feel a blizzard of emotions — guilt that their lifestyle or genes somehow caused the problem; anger and an urge to point the finger of blame at someone or something else; grief; fear; and confusion. No two reactions are the same. "First, I was angry with God," remembers Mary Neary, 74, a Forest Hills, N.Y., grandmother who has "four wonderful grandchildren,” including Joseph, who is autistic. "Then I was angry at my girlfriends with their perfect grandkids."

From Grieving to Helping

Grandparents often labor under what Don Meyer, director of the Sibling Support Project, calls "dual parental grief." They grieve first for that idealized grandchild that they don’t have. But they also grieve for their child, who will never share the same parental experiences they had themselves, and who will instead face the challenges of raising a child with special needs. "I not only worry about him, I worry about you," Neary told her daughter, Jackie Ceonzo, who became the founder of the New York City after-school program SNACK, or Special Needs Activity Center for Kids.

Pediatrician Thomas Pinkstaff, whose grandson has autism spectrum disorder, advises other grandparents to take the time they need to come to grips with their emotions when they find out about a child with special needs. "Grandparents need to be able to sort out their emotions — through gaining more knowledge about the child’s special needs, communicating with others who have had similar experiences, and faith," he says. "They shouldn’t feel rushed to understand everything at one time or attempt to influence the parents’ decisions and needs."

Still, there comes a time when one has to stop grieving and start living and enjoying a grandchild. "I cried," Neary says. "I cried so much I have no tears left. Then I turned around and started helping."

The Power of Knowledge

Education is the key to being the best grandparent you can be for a child with special needs, because you can't help your family if you don't understand the problems the child faces. In many cases, Panaccione points out, physical limitations and illnesses are easier for grandparents to understand and accept. "Emotional and mental disabilities are more difficult," she says, but "discounting, denying, or pooh-poohing a diagnosis of attention deficit/hyperactivity disorder or obsessive-compulsive disorder doesn’t make it any less real. And it does nothing to enhance the relationship with their grandchild."

For basic information about a grandchild's illnesses, people often make the mistake of relying solely on the child's parents. But as Meyer has learned through his work with the extended families of children with special needs, information doesn’t always make its way to grandparents. He encourages grandparents to seek out information independently on the Internet, from government medical sources, or established national support groups for a grandchild's specific diagnosis.

"If grandparents are not up-to-date about a disability, they usually do not have an optimistic picture," Meyer says. Becoming educated can give you a more realistic picture of both the challenges a grandchild faces, and the possibilities for his or her life. It can also help resolve any feelings of guilt about somehow being responsible for the problem.

Understanding a grandchild’s condition and its treatment also makes it easier for you to support a parent. You may have anticipated questions from your child about colic, potty training, or playing sports. Now your child faces a different set of questions. But a parent can’t discuss the advantages and disadvantages of various treatments, medications, or educational options with you if you don’t have a basic understanding of the condition.

Putting the Child First

The better you understand your grandchild, the better your relationship with him or her will be. You need to learn not only what the child can’t do — but more important, what he or she can do. Unfortunately, some grandparents without a clear understanding of their grandchild's capabilities spoil or baby the child. "Grandparents should educate themselves," Panaccione says, to learn "how to interact in the way best suited to the child."

A grandchild with special needs will change your life — but it’s up to you to determine if it will be a negative change or a positive one. "I used to be upset if I broke a nail," Neary says. "But Joseph has changed me. I’m so grateful for what he’s taught us about love and caring."

Joey’s younger brother once told Neary, You know, Grandma, it’s not easy having a brother with autism." Neary agreed, but asked Andrew to name two things that were good about his big brother. "Well, he kisses me a lot," the boy said, "and he loves me a lot." Neary agreed. To her, what makes Joseph special isn’t the collection of symptoms that make up his autism — it is the love he gives.

Next: Special Needs in the Spotlight


GKSN: Grandparents of Kids with Special Needs

Please share this announcement with others who may be interested!

The Sibling Support Project is thrilled to announce GKSN—Grandparents of Kids with Special Needs. We believe that no one understands a grandparent’s unique joys and concerns better than another grandparent of a child with special needs.

On the GKSN website, grandparents will have a chance to meet other grandparents through our Yahoogroup or Facebook groups, share ideas for supporting their kids and grandkids, and even post pictures of their grandkids!

Please visit www.gksn.org and help spread the word!

Don Meyer

deleomeyer on 2012-12-10 14:32:01

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