How to Help as a Grandparent

Terry and grandson

This article was contributed by Terry Fetzer, who is an Autism Resource Specialist in the Eastern region and has a son and a grandson with autism.

Most of us remember what a miracle it was when we became a parent of a child. The years pass, and now your child is an adult having a child, and the memories flood back. As an excited grandparent, you celebrate the birth of your grandchild with the parents. As the child grows, differences begin to show up in the development of communication, joint attention, playing with objects, and responding to others. The usual milestones are not being met, and the parents seek help. After evaluations, your grandchild receives a diagnosis: Autism Spectrum Disorder. You’re faced with the reality that your precious grandchild has special needs. The emotional rollercoaster begins to takes over. You go through a grieving period as you begin to process how this will affect the lives of your child and their spouse. The love you feel is strong, and they will need you now more than ever. Your heart aches, wondering how they will manage; you know how much time and energy it has taken over the years to raise your own children. The challenge as a grandparent of a child on the autism spectrum begins to sink in. What does this really mean? You are afraid that you will not be able to keep up with the demands that will come up day after day. You take a deep breath! You decide you will have the courage to continue, one day at a time. With strength and support from each other, your family begins the journey.

You can help your child

Love your child and try to listen before talking. Be kind and allow your son or daughter to ask for help instead of jumping in and trying to fix things in a way you think is best. This is their child, and as adults, they need your love, support, and guidance, not your control over their lives. Respect their decisions even you would do something different.

Understand that it will take some time to establish a routine that will work for the family. Try to use the strategies and schedules that they have worked on to maintain consistency. It is OK to share suggestions and let them know if you do not understand something, but please try first to follow their lead. They will be tired, and you being on board with their routine will help with transitions and their anxiety. This helps the whole family.

Be helpful and let them know when you are available to go to the store, fix a meal, care for the other children, and help around the house. Even taking the kids for an hour or so can provide a break they will appreciate very much.

Keep encouraging them and let them know that you are cheering them on. Use praise to lift them up. Be positive look for the progress they are making each day.

What I have learned over the years

Educate yourself by finding out about the disability. Ask your children to share resources they have found. Find local resources and share the information with your children. Share articles and news you have heard to show you are actively wanting to understand your grandchild.

If possible and okay with the parents, it is helpful to accompany your grandchildren to meetings, doctor visits, therapy sessions, etc., so you can talk about how things are going and ask questions if you do not understand. The more you learn, the better support you can be for the family.

Take care of yourself and balance your time with your husband and your extended family. Share your love and attention with all of your grandchildren. Try not to favor or ignore the one with the disability. Love them all as equally as you can. Every family member is a vital part of the support system for the family. You need each other.

Try to connect with support groups and other people in your community who have grandchildren with a disability. Spend some time together to share experiences. It is comforting to know you are not alone on the journey with your children and grandchildren. You also can learn from each other and be a positive support during the good and difficult times.

How to support your grandchild

Love your grandchild as a person first, no matter what. Accept them for who they are. Meet them where they are. Learn what they like and play with them. Enjoy what time you have together.

When they get upset, try to redirect them. Keep language clear, concise, and to a minimum. Give them time to calm down and get themselves together as much as possible. Don’t take personally anything that is said in an explosive moment. Always see this as a symptom, not who they really are as a person.

Help them learn to trust you and feel you are always a safe person to whom they can turn whenever they need help. Give them support and help in a way that is loving, kind, and consistent.

Remember, our grandchildren are unique individuals. They need and deserve the best life possible. Be a positive influence and let them know your love grows with them each and every day.

Terry Fetzer can be reached at tfetzer@autismsociety-nc.org or 252-670-5275.

Spotlight on Grandparents & Chapters

EileenandMilesHancox

Editor’s note: For those who have a loved one with Autism Spectrum Disorder, a community of support can be a lifeline. For more than 40 years, ASNC Chapters and Support Groups have provided families who face similar challenges an opportunity to encourage one another, share experiences, find information and resources, and have a place where they feel welcomed and understood. These volunteer-led groups also offer education to families, increase autism awareness and understanding, and support and extend ASNC’s mission in their local communities.

Throughout this year, we are highlighting the ways each of our Chapters and Support Groups makes a difference. To find one near you, please click here or contact Marty Kellogg, ASNC State Chapter Coordinator, at 919-865-5088 or mkellogg@autismsociety-nc.org.

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Grandparents often hold a special place in today’s families. Economic realities mean that extended family members may have to lend a hand in rearing children. For families dealing with Autism Spectrum Disorder, grandparents can provide an extra layer of support that is greatly needed.

In some cases, grandparents are the primary caregivers. Annette and Steve Horsley of Winston-Salem have reared their two grandsons since the younger one was a toddler. Aaron, 11, and Sam, 9, both have autism, and the Horsleys lead the Davidson County Chapter of the Autism Society of North Carolina (ASNC). Annette says they were inspired to start a local chapter after seeing a Surfers Healing event on the coast and learning of an ASNC chapter’s work with the group.

“When we get together and share, it’s like we’re not alone,” Horsley says of her chapter. Hearing for the first time that your child has autism can be overwhelming, she says. But talking to other caregivers in the same situation lets those families know: “You will survive this.”

Grandparents, especially, can offer solace, because they often have gone through challenges with their own children, who are now adults. “We can say our children are in their 30s, and we lived through it,” Horsley said, laughing.

The Davidson Chapter is very active, offering one social activity and one educational meeting per month. Horsley said they are particularly proud of the chapter’s work to partner with other local agencies to get families the help they need. “I’m excited that we’re all working together for Davidson County. We’re actually reaching out to the community.”

The Wayne County Chapter also works with agencies in its county to expand opportunities for local families, said Terry Daily, one of the co-leaders. The chapter meets once a month, often inviting speakers in for educational programs, and leaders also share details of programs by other agencies so members can attend.

Daily and his wife adopted their granddaughter with autism in 2008 and are her primary caregivers. They have been a part of the chapter for about 10 years, since learning  while they had custody of her that Kimberly, now 10, had autism.

Marty Kellogg, State Chapter Coordinator, said, “Terry is a passionate advocate for his granddaughter and works tirelessly in the chapter to help and support other families.”

Daily said some grandparents face a unique challenge if they are the primary caregivers for grandchildren with autism. “Unless you have custody of the child, your hands can kind of be tied,” he said. Noncustodial caregivers have difficulties getting services for their loved ones.

Grandparents support groups

In other areas of North Carolina, ASNC has started support groups especially for grandparents.

Eileen Hancox of Raleigh said learning that her grandson Miles, now 7, had autism was difficult for her. “With a grandparent, it’s a double whammy,” Hancox said, remembering the worry she felt not only for Miles, but for her son and his dreams for his own child. “They’re still your kids, and this isn’t what they bargained for.”

Hancox decided that what she needed was a place to brag about Miles, a place to share her joys and concerns – a place just for grandparents. Nothing like that seemed to exist locally, so she started one: a grandparents support group through the Wake County Chapter of ASNC. Members meet once a month to listen to a speaker and spend some time sharing. “We can be honest and know that it’s going to stay in that room,” Hancox said. “I am so excited with the response.”

Kellogg said she is also pleased and excited that chapters have begun creating support groups for grandparents. The Guilford County Chapter also has started a group for grandparents to share their unique perspectives and learn from speakers. Lisa McCutcheon-Gutknecht, the Guilford leader, said future plans will be shaped by feedback provided by the grandparents.

“We hope to see more of these groups spring up across the state as our chapters continue to meet the needs of all their family and community members,” Kellogg said.

For more information

Davidson County Chapter: autismsociety.davidsonnc@gmail.com

The chapter meets on the third Thursday each month at the Lexington library. The chapter will learn about Camp Royall’s year-round offerings at 6 p.m. March 20.

Wayne County Chapter: http://home.earthlink.net/~asncwayne/

The chapter usually meets on the third Friday each month at St. Luke Methodist Church in Goldsboro. Autism Resource Specialist Katie Holler will speak at the meeting at 6:30 p.m. March 21.

Wake County Chapter: http://wakecountyautismsociety.org/

For information about the grandparents group, email Eileen Hancox at eileenhancox@gmail.com. The group meets on the second Tuesday each month at the  ASNC state office, 505 Oberlin Road, Raleigh.

Guilford County Chapter: asnc.guilford@gmail.com

The Guilford grandparents group will meet at 10 a.m. Wednesday, March 19, at the ASNC Greensboro office.

You can also find all of the chapters on Facebook.