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Home \ I'm a Grandparent

I'm A Grandparent

by Mary Pinkava, copyright Pilot Parent Partnerships
information was developed courtesy of the William Tully Memorial

You are a grandparent
Your grandchild has a disability

Most likely, these are words you never expected to hear.  Maybe you have been repeating them over and over to yourself since the birth of your grandchild, trying desperately to understand what they really mean.  You are not alone.  Many grandparents who have grandchildren born with a disability go through the same wrenching process.

"A grandchild whose talents may be limited by a disability are still individual personalities who, regardless of the severity of the disability, can certainly recognize and need love, understanding and support, maybe even an extra portion. I would tell grandparents that such an assignment doesn't appear to be too tough to handle."  — Grandparent

Feelings and Reactions

The birth of a grandchild is a joyful occasion, a time for celebrating the arrival of a new family member.  This joy is rightfully yours as a new grandparent.

If your grandchild has a disability, you may also be experiencing feelings of shock, numbness and disbelief.  You may feel overwhelmed and experience a sense of sorrow and sadness as you begin to comprehend the extent of the adjustment of time, energy, and resources that lie ahead.  For many grandparents, the initial sense of helplessness is excruciating, since you are experiencing grief on several levels -- for your child, your grandchild, and yourself. 

New Beginnings for Your Own Child

New beginnings are never easy, especially when traveling in uncharted territory.  Besides trying to adjust to parenthood in general, your son or daughter will be on an emotional and physical roller coaster trying to juggle their time, energy, and resources in order to cope with the demands imposed by the disability.

Trips to the doctor, new financial concerns, new routines, less time for themselves, and lack of sleep will produce frazzled nerves.  Life will seem out of sync for them right now.  The strain may unintentionally overflow into their relationship with each other and with you. Give them the gift of patience and understanding. 

New Beginnings for You

This experience may lead you down new roads of expressing your love, care, and concern for your son or daughter. Here are some ideas you might care to add to your own list.

Listen with love.  Listening with love means not jumping in with your own opinion, but finding out what your son or daughter has decided is the best mode of parenting for their child.  It also means affirming those decisions and respecting choices that may be different from your own. 

Communicate your own feelings.  Perhaps sharing your feelings with your son or daughter will be a totally new experience for you.  You may feel vulnerable in doing so.  You are both facing a new situation.  Go easy.

Respect new schedules.  Your son or daughter will be trying to set up new household routines and schedules so that they can provide your grandchild with the best care.  Ask about these schedules and try to work your call or visit in at the most appropriate times.

Be available.  Let your son or daughter know if you are available to help with tasks such as yard work, meals, care of other children, driving or shopping.  If you offer and are turned down, don't feel less loved.  You will be loved for caring enough to have asked.

Allow for breathing room. Avoid the "poor dear" routine.  Show genuine concern, not pity.  Pity looks down upon, empathy says, "I'm here standing beside you." 

Cheer them on.  Kind words can lighten the load of a hectic day.  Celebrate all progress and each and every victory.

Enjoy being a grandparent.  This is a right to which you are entitled.  You cannot establish a relationship by being distant.

Share the elements of your common belief system.  If you and your son or daughter share a common belief system, use it as a mutual support.

Where do I go from here?

Other grandparents of children with disabilities have named at least six guideposts to a smoother adjustment:

1.  Communication.  Talk to your son or daughter.  Let them know you are there to support them.  Be as honest and open as possible.  Offer to inform other family members or friends about the disability by writing a letter or calling.  Allow your son or daughter to direct the amount of information they wish to be shared.  

2.  Education.  Many grandparents have said that finding out all they could about the disability was one of the best coping mechanisms they had.

3.  Involvement.  Grandparents who were actively involved by making hospital visits, and accompanying their grandchild for treatments felt much more at ease with the disability because they were more informed and knowledgeable concerning what to expect and not to expect.  Grandparents who live in another state can stay actively involved with their grandchild through letter writing, phone calls, tapes, videos, and photographs.  The important thing is to remain in contact.

4.  Realism.  Your grandchild is a child first, the disability is only a part of him/her.  That means recognizing his/her talents and abilities and avoiding reinforcement of any negative behaviors. 

5.  Balance.  Balance your time and your attention among all of your grandchildren, neither ignoring nor favoring the one with a disability.

6.  Connection.  Getting in touch with other grandparents of children with disabilities provides a wonderful support system for sharing feelings and ideas and keeping a positive attitude.  Help your son or daughter get connected with outside resources and support groups.

Support Group information for Grand Parents who are raising their Grand Children:

MIKID (Mentally Ill Kids in Distress) 
Meeting times:  6-8pm on the first Tuesday of the Month
To be held at: 
Superstition Mountain Mental Health
7303 E. Main Street, #113
Mesa, AZ
(602)253-1240

University of Arizona Maricopa County Extension Office
Coordinates Grandparents Support Groups.
Contact:  Jessica Sanchez
602-827-8200 Ext 356

Additional Information:

Article: The Influence of Grandparents and Stepgrandparents on Grandchildren
Over the past 20 years, increased attention has been given to the importance of grandparenthood. Read more...

AARP

Project GrandCare
http://www.centerdoar.org
Innovative program, which offers support and assistance to grandparents who are raising their grandchildren, coordinated through Beatitudes Center Developing Older Adult Resources ( DOAR)

Important Information from Social Security Health Insurance for Children
If you have children or grandchildren under age 19 who are not covered by health insurance, a new Children's Health Insurance Program may help.  To find out more, you can look on the Internet at www.insurekidsnow.gov or call toll free 1-877-KIDS-NOW (1-877-534-7669).  The number connects you to your state's program.

This section of our web site was made possible by a gift from the Bob Jones Memorial Fund. Raising Special Kids wishes to acknowledge his commitment to other grandparents and we offer these resources in his memory.

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