Seven months had passed since the announcement that another young couple whose parents attend our church expected a baby, their first. Ladies got together and arranged a baby shower for the couple and celebrated the impending birth. But when the announcement was made, hushed undertones of worry and concern spread throughout the congregation. The baby had Down Syndrome.

All the hopes and dreams of normal parenting needed to be rearranged and redirected. Their energies would now be spent in finding the best way to care for their special child. While coping with the birth of a special needs child was difficult for the new parents, it was doubly so for the grandparents. As Linda Murphy and Suzanne Della Corte point out in an article for the National Down Syndrome Society, “ ... the grandparents suffer not only for the newborn but for their own child’s pain as well.”¹

As with many other major unplanned changes in our lives, there follows a period of grief—grief for what might have been. Grandparents need to recognize that grief if they are to help their children cope with the responsibilities that lie ahead. Grandparents can be a vital part of the success of raising a special needs child.

I like the way Pamela Wilson, BellaOnline’s Special Needs Children Editor, puts it. “Who else would think to teach a child to fish, play ping pong, tell jokes or pull pranks on their parents and siblings? Grandparents are often the biggest assets a child will find as they grow up.”²

Grandparents often have the time and patience to teach the little things like tying shoelaces, riding a bike, holding a pencil, pouring a glass of milk. To the special needs child these tasks may seem overwhelming, to the parents—daunting. They take a long time to learn and parents often have their time divided between other children as well.

Siblings may need help in dealing with their feelings involving their special needs brother or sister. Learn to recognize those feelings of jealousy (mom’s time is limited), confusion (why is he like that?), or embarrassment. Talking about them can help siblings to cope. Grandparents can either discuss those feelings with their grandchildren or take care of the special needs child to give mom or dad the chance to discuss those problems with the other children.

Here are a few other ideas of how grandparents can help:

• Exhibit a positive loving attitude toward your grandchild. Others in the family will follow your example.
• Learn all you can about your grandchild’s special need but remember to support the decisions the parents are making in their child’s interest.
• Offer to help with household chores.
• If you are able, help in the special programs and/or therapies the parents have found for their child. Or baby-sit the other grandkids to free up time for parents to meet those needs.
• Encourage the parents of your grandchild. Be aware that there will be times of discouragement and be ready to praise their efforts.
• Work your visits and phone calls into the family’s schedule.
• Most importantly love that grandchild for the special person he is.

Many grandparents worry over the financial needs of their special needs grandchild and generously wish to provide for their future if they are able. A word of caution: it is not always a help to set up a trust for that child.

Our own special needs child is developmentally handicapped. While we are capable of helping him financially, we have had to be circumspect in our desire to do so. Many of the programs he now qualifies for as an adult would be taken away if he had too much of an income from a trust.

Each state along with the federal government sets rules that govern the aid special needs children/adults may receive. In the best interest of your grandchild, consult an attorney who is familiar with the laws and the policies governing the programs that are available for those who are handicapped. There are special needs trusts that can be adjusted to keep the recipient from being disqualified from government programs based on financial requirements.

I once wrote a short essay about our special child. In it I asked, “Why do we call our slow learners, mentally impaired, learning disabled, ‘special’? Is it because we don’t like the other labels? Or is it because God has given them to us to love in a special way?”³ Don was only eleven then. He is 28 now and we continue to love him for the wonderful person he is. More than that, he returns our love and brings us joy that is unique only to him.

Truly, he is special. Your grandchild is too.

¹Grandparent’s Role, http://www.ndss.org
²Grandparents of Children with Special Needs, http://www.bellaonline.com
³Our Special Child, http://www.karenrobbins.com/our_special_child.htm 

Copyright © by Karen Robbins Share

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