The Role of Grandparents 

Resources compiled by ConnectWC

Grandparents play a unique role and often share special relationships with their grandchildren. This relationship, however, can become complicated when their grandchild is diagnosed with a disability. It can be a challenging time as they grieve for themselves, for their child and also for their grandchild. Grandparents need to remember that there are resources available to assist them to understand the positive and supportive role they can play in the family, helping them to create a loving and special bond with their grandchild.

Information is Important

Try to learn as much as you can about the diagnosis your grandchild has received. There is a wealth of information on ConnectWC for parents and grandparents.  There are numerous general as well as specific advocacy organizations listed to help provide support and knowledge for those caring for children with a wide variety of special needs.

It's important to know that not all disabilities are known at birth, and some are not discovered until the child is older and symptoms start to emerge.  Regardless of when a diagnosis is made, knowing how to best support your child and grandchild may be challenging and confusing.  Here are some guidelines on do's and don'ts to best support your family.

Times Have Changed

The school environment you may have experienced as a child is probably quite different than the one your grandchild is living in now. There has been tremendous progress in attitudes, advocacy, and inclusion. Unlike years ago, students with disabilities are entitled to a free and appropriate education and should be integrated into the classroom with their peers as much as possible for their individual needs. Learn more about how special education has changed over the years, History of Special Education and IDEA.

Ask How You Can Help

Coping with your own sense of loss and grief can be difficult, but try to be there for your child as soon as possible.  If you live nearby, spend time with your grandchild. Going along for doctor appointments can help you learn more about your grandchild's situation and an extra hand is often welcomed by parents! If you are comfortable, offer your services to see if they are needed.  Giving a few hours of respite time for exhausted parents is sure to be appreciated.  Knowing their child is with someone they can trust and that knows their child well is a true comfort.

Support Your Child

 Respect their role and the decisions they are making for your grandchild. Offer ideas without telling them what to do. Sharing information that may be useful shows that you are interested, knowledgeable, and want to be involved. Taking care of a child with special needs requires tremendous amounts of time and energy – ask how you can help lighten the load. Emily Perl Kingsley wrote a frequently shared article called "Welcome to Holland".  It eloquently describes what it is like to raise a child with special needs and can help you understand the emotions your child may be experiencing.

Experience Can Be The Best Teacher

 It is important to remember to look at your grandchild as a 'child who has a disability' and not as a 'disabled child'. They may have special needs but they also have special gifts. Help them become all they can be, but also enjoy who they are. The love of a grandparent for their grandchild is a wonderful thing!

Resources

Traveling with your Grandchild with Special Needs

Figuring out the best places to go when traveling with someone with special needs can be a challenge. Grandparents.com offers great information on traveling with grandchildren as well as some ideas on fun places to visit.  They share tips from professionals as well as other grandparents on how to make the experience a success:

Grandparents Raising their Grandchildren

Generations United has put together Grand Resources:  A Grandparent's and Other Relative's Guide to Raising Children with Disabilities.  This 66-page guide provides information on where to start, along with information on health care and government programs.

Financial Considerations

Grandparents who are considering leaving an inheritance to their grandchild with special needs must leave the money in a way that does not jeopardize government benefits they may be receiving. If the grandchild has a supplemental needs trust or special needs trust in place, money can be placed into the trust to protect these benefits. Learn more about trusts on ConnectWC here.

Disability Knowledge Series: Special Needs Trust is a fact sheet from the The Autism Advocacy & Law Center that explains how receiving a large sum of money, such as an inheritance, can affect government benefits and programs.

Reprinted from Exceptional Parent Magazine, Grandparents: The Do's and Don'ts of Planning for Your Grandchild with Special Needs shares information on what grandparents should and shouldn't do when leaving money to their grandchildren who have special needs.

Support Groups for Grandparents

PACER Center, Grandparent to Grandparent Program

The goals of the Grandparent to Grandparent program are: to support, inform and empower grandparents to act as effective advocates for their grandchildren with special needs; to meet other grandparents of children with special needs and share joys, concerns, grief and common interests; to learn helpful strategies that enable grandparents to be helpful to their children and families and to encourage communication between generations; to provide support, both physical and emotional, to your children -- the parents of children with disabilities, thus enhancing the grandparenting role; and to learn about resources available for children with disabilities and families.

Down Syndrome Association of Minnesota, Just For Grandparents

The Down Syndrome Association of Minnesota has devoted a page on their website just for grandparents. It includes general information, articles, a photo gallery of grandparents and their grandchildren, and opportunities to get involved.

Rett Syndrome, IRSF Grandparents Network

This network is a primarily email based community that will strive to help grandparents understand Rett Syndrome better as well as how they can help their children cope with their child's diagnosis.