Special Needs II: Spinning the Mobile

On the PBS show John Bradshaw on the Family, the prolific author of self-help books used a mobile to represent the family. Even the slightest action on one piece of the mobile had an effect on every other piece — a fact that Bradshaw believes is a perfect representation of the family dynamics. As a grandparent, your actions can have an impressive effect on how your children, grandchildren, and other extended family deal with the challenges of a special need.

Guiding the Family

Raising a child with special needs takes a tremendous amount of a parent’s time and energy. Because of this, other family members often turn to grandparents for updates. When aunts, uncles, and cousins ask “How is Janey doing?” your attitude is just as important as your answer. “Your attitude can be that this is either a life-searing tragedy, or, a series of challenges," says Don Meyer, founder of SEFAM (Supporting Extended Family Members) at the University of Washington. ”Extended-family members will follow your lead. Therefore, grandparents have the power to make this situation better — at holidays, visits, any time the family is together. They can set the tone for the entire family.”

Meyers urges grandparents to “be as involved as they can, depending on everyone’s comfort level.” He recommends offering to attend medical or IEP (Individualized Education Plan) meetings as a parent’s second set of ears, as well as to learn more about your grandchild’s circumstances. Jackie Ceonzo, founder of SNACK (Special Needs Activity Center for Kids) in New York City, suggests that grandparents who don’t feel capable of caring for their grandchild on their own for an afternoon should consider becoming involved at the child's school. “Schools always needs volunteers; you get to participate in the child's life, understand their limits, and see what they are able to do.”

Parenting a child with special needs often seems to be an endless schedule of medical appointments, therapy, and teacher meetings. Sometimes even the simplest thing can help — doing research, calling to confirm an appointment, or making a meal parents can stash in the freezer. According to Ceonzo, mother of a child with special needs, the worst thing to do is just ignore the situation because you are uncertain. “My mother said, ‘I don’t know what to do’ and I said ‘I don’t know what I’m doing either,'” confesses Ceonzo. But even that was better than silence. And, they both learned together.

She also recommends that grandparents make an effort to reach out to their children when the child with special needs starts school. “Up until about age 3, the government meets a lot of their needs with early intervention. But once they get into school, especially mainstreaming [integrating students with special needs into a regular classroom], there’s a void.” This is when extra help from a grandparent can really make a difference.

Giving Everyone a Turn to Be Special

“All grandchildren are special,” says Thomas Pinkstaff, M.D., a pediatrician serving on the Kentucky Autism Training Center Board. Unfortunately, siblings of children with special needs often feel, well… unspecial. “Be careful not to neglect the other children, or show an overabundance of attention to the one with special needs,” says Vicki Panaccione, Ph.D., a clinical child psychologist and associate staff member at Health First Hospital in Rockledge, Fla. “Your other grandchildren can become angry and resentful. If you’re not careful, they’ll sprout a symptom so that they, too, can command attention — even negative attention!” Pinkstaff participates in his grandson’s activities (he was diagnosed as having autism spectral disorder), but he also makes equal efforts to participate in his granddaughter's activities. It’s always a good idea to spend individual time with every grandchild so that each has a turn at being the “most special” kid in the room.

Opening Your Wallet

Raising a child with special needs is often an expensive undertaking and most parents would welcome an offer of financial help, says Ceonzo — even a bag of groceries or a new toy. She urges grandparents to make sure their contribution will be useful. Don’t bring cupcakes and ice cream if your grandchild is on a specific diet. “And we all have a closet full of toys we can’t use,” she adds. It takes only a minute to call a parent and check if something is wanted.

Some grandparents are able to make a much bigger contribution to their grandchild’s future. “Grandparents think they're helping by leaving money to a child with special needs. But the thing is, many programs are available through the government. Then, if someone with special needs suddenly has an income [a bequest in a will], it can cause a lot of problems,” says Ceonzo. According to an April 2005 Forbes article entitled "Financial Planning for Kids With Special Needs," assets more than $2,000 can affect government benefits, although additional funds can be placed in a trust. The key to doing the most good is to discuss financial planning for your grandchild with your children.