By Bonnie Malkin Gillman, Founder

I receive inquiries every week from grandparents residing in other states and countries about how to establish a chapter of GAN in their local community.  GAN serves the 34 cities that comprise Orange County, California. Our two websites, www.ganinfo.org  and www.faninfo.org  provide resources to people from more than 80 countries. We share information about our programs, projects and events and we invite grandparents in other areas to replicate them. Our name and logo, however, are copyrighted and cannot be copied.

Establish A Support Group

Here are a few suggestions that should help you to develop a grandparent autism support group in your community:

• If you live in the same community as your children, ask them to identify other families with local grandparents and arrange to meet them.
• Join local chapters of national autism organizations, i.e. participate in your community’s Autism Speaks’ Walk Now or other autism organizations to meet other families.
• Contact hospitals, pediatricians, neurologists, autism service providers and special education teachers to determine if they know other grandparents. It is best to provide them with a simple, one page flyer with your contact information for them to distribute.
• Request a speaker from a local university or autism center to make a presentation on a topic of interest to grandparents.  Avoid engaging self-promoting speakers or endorsements for commercial products. See “Presentations Past” on this website for some topic ideas.
• Schedule a meeting in your home or in a local cost-free facility. Churches, synagogues, libraries, senior centers, non-profit organizations and school districts will be most likely to provide meeting sites for your group.

Here are additional ways you can advocate and expand support for the autism community:

Advocate for Autism

• Grandparents can help to eliminate social stigmas associated with autism.  Just disclosing that you have a family member with autism typically encourages other people to ask questions, learn more and increase their support for autism causes.
• Invite family members, friends, neighbors, co-workers and community philanthropic organizations (i.e. Rotary, Women’s Clubs, Business Networking Groups, etc.) to support advocacy and fund raising efforts for autism causes.
• Encourage local Parks and Recreation Departments and other community based agencies to provide programs and services for people with developmental disabilities.
• Advocate for autism legislation and funding for research, insurance, special education, employment opportunities, housing, transportation, and services that will increase the quality of life for those with autism. Help to develop needed lifetime supports and encourage acceptance and social integration for people with autism in your community.
• Do you own, work for or know of a business that could employ someone with autism?  Go here to learn more.

Though it seems I look away
Don’t laugh at words that others say,
Turn from those who seem to stare
Believe me I still know you’re there.

A loving glance means naught to me
It is your presence that I see,
A soft and caring voice to hear
Calms and takes away my fear.

What I feel is hard to show
Maybe some will never know,
The special person that you see
The loving child I know as me.

Let me take your hand in mine
I’ll lead you if you take the time,
To love that dwells firm and deep
A gift from me for you to keep.

So share with me this time today
Do not leave until I say,
Stay ’til you know who I am
A loving gentle little man.

Copyright © 2008 by M. J. Nelson

By Jennifer Krumins

Grandparents may give up easily when their grandchild expresses disinterest in an activity. Individuals with autism are built to resist novelty at first. Trying new things is not usually their forte. Expanding outside of their autistic world is not usually very comfortable either, but it is necessary. We grow as humans by facing fears and doing new things. We do not grow when we are comfortable. Self esteem is cultivated by pushing our limits, achieving goals and feeling success.  Parents can sometimes stifle their child’s ability to take a risk (it’s hard for them to stay calm, cool and collected). Grandparents, however, may have much more success in encouraging their grandchild to try new activities.

So how do we encourage kids with autism to try new activities?

• Provide two or three choices of activities and insist that the child choose one (provide visual information when possible and allow the child time to peruse and think)
• Prepare the visuals (timers, pictures schedule) to support the child
• Plan reinforcement!!! Motivation is KEY: What will the child earn by participating for 5 minutes? 10 minutes? (Show this visually in the form of tokens or a picture on a timer)
• Practice the skills that are a part of the activity individually (task analysis): social skills, gross motor skills and fine motor skills (reinforce practice attempts!)
• Choose activities that are more suited to kids with autism…team sports that require fast thinking, body contact and excellent eye/hand/body coordination are often too reliant on deficit areas
• Use the child’s special interests as a basis for the activity (but remember, you may not know what a child is interested in until they have tried a variety of things)
• Keep trying…if at first your grandchild is disinterested, try again later and then try again and again…kids change and preferences change
• Determine with the child, a preset amount of time that the child will try the activity

The following is a list of possible activities to look for in your community

• Boy Scouts/Brownies
• Special Olympics
• Bowling, lawn darts, bocci ball
• Swimming/ kayaking, canoeing
• Team sports: basketball, hockey, baseball, soccer
• Tennis, badminton
• Golf
• Dance (yes boys can do this too!), drums, guitar, singing
• Volunteer activities at parks, animal shelters, old age homes and zoos
• Skateboarding, water skiing, wakeboarding
• Chess club
• Drama club
• Environmental clubs
• Art classes

Keep the goal in mind: we are doing this as grandparents in order to build social competence, develop talents and abilities and broaden leisure activities. It is a sad fact that adults with autism suffer from low self esteem, lack of leisure time activities and depression. You can make a difference in your grandchild’s life by starting young. Build a propensity to try new things and to develop varied interests. Friendships are created when individuals have the experience of socializing and enjoying activities with others that share the interest. Self esteem blossoms when children feel a part of a group. Children that have skill sets are often more socially accepted by their peers. Well known, autistic individual, Temple Grandin asserts the need for children to be “engaged with the world: we cannot let them tune out.”

Grandchildren with autism need to develop skills, talents and abilities that are beyond their comfort zone. We owe it to them to promote activities and action that promote their growth as individuals.

By Bonnie Malkin Gillman, Founder

I am frequently asked why I founded the Grandparent Autism Network. Frankly, it was in response to my personal experience and my desire to help my family.

As we know, the statistics are compelling. Autism is epidemic. A new case of autism is diagnosed nearly every 20 minutes in our country. One child in 88 has autism. When that “one child” is your grandchild, it has a profound impact on you. My grandson was almost two years old when he was diagnosed with autism. He was losing communication skills and had difficulty interacting socially.

I felt overwhelmed, confused and uninformed. I was even more distressed by new terminology that I didn’t fully understand. My children spoke about IEP’s, OT, PT, ABA and other interventions commonly recommended for children with autism. I was somewhat encouraged that these might be remedies that could “fix” my grandson’s autism.

I had lots of questions. Where were the autism service providers in Orange County and how could my grandson access them? What were his legal rights? What were the costs for services not provided to him? Were assistive technologies available to minimize his learning deficits? Were there special diets, medications and vitamins that could help? What research was underway that might potentially benefit him? What were realistic expectations for his future?

I soon learned that autism is a scientific enigma, causes are unknown and cures are not readily available. Responses to treatments vary because autism presents differently in every child. Research efforts are complicated, difficult and slow to be conclusive. Statistics are not available which indicate the best treatment options for each individual child. There is no universal consensus about education or treatment plans. School programs vary and parents must seek guidance about which ones will be most beneficial for their child. Sometimes, even professionals disagree about which interventions should be provided and a protocol may be based upon an uneasy compromise. Parents and grandparents may be limited in their choices by financial constraints. Frequently, some therapies are not supported by medical insurance, school districts or the Regional Center of Orange County.

My concern increased when I learned it is estimated 85% of marriages in families that have children with autism end in divorce. It is not unusual for families to lose their homes and sacrifice comfortable lifestyles in order to pay for support services. Because of this, many grandparents are housing and raising their grandchildren. Some have full legal responsibility for them. Formerly retired grandparents have returned to work so they can financially support special programs for their grandchildren. Many of us are needed to transport grandchildren to autism services after school when parents are working. Grandparents may be the only resource for respite care that parents have.

I sought resources for grandparents. There was no information on the Internet specifically for grandparents. I found many local support groups for parents in Orange County, but there were none exclusively for grandparents. Grandparents have a different perspective: Our children are challenged daily caring for their child with autism, meeting the needs of their typical children and just getting through a day without total exhaustion. Grandparents are concerned about their children, all of their grandchildren and every future generation that may be genetically predisposed to autism. I was determined to improve the quality of life for my grandson and our family and I knew that my concerns were universal.

In April 2006, I founded the Grandparent Autism Network, an all volunteer non-profit organization, which provides education and advocacy for autism and offers social opportunities for grandparents and their families. Presentations focus on autism and the medical, educational, legal and social issues that affect families. GAN does not charge fees for membership or meetings. GAN relies on financial support from the community. Speakers are well respected professionals. When presentations are exclusive to grandparents, time is scheduled for questions and answers. We do not advocate for specific autism interventions, we simply provide information about them.

As a network, grandparents frequently receive the best advice, tips and resources from each other. We share practical information from personal experiences with our grandchildren. Our membership has grown and there are many worthwhile projects underway. GAN invites your participation and support and welcomes grandparents in other communities to replicate our programs and projects.

By Pat and Terry Mercier, Co-Chairs

As grandparents of an eleven year old grandson with autism, we realize the value of being involved in his life. Because we see him every week, we have developed a close relationship and have become more knowledgeable about his needs. He feels comfortable with us and looks forward to seeing us. Grandparents relate to their grandchildren in a very special way.

We want to encourage you to become involved with your grandchild. It is a joyful challenge that will reward all of you. The more time you spend getting to know your grandchild, the more you will feel comfortable. You are truly valuable to this child. If you are concerned about taking full responsibility for your grandchild when you are together, ask a friend or hire someone to help you. We suggest that you plan an activity or outing that you can share. You can get good suggestions of places to go and things to do from other GAN grandparents.

Our upcoming meetings in June and July will be focused on activities with our grandchildren. In June you will learn about summer programs and local resources available all year that are particularly suitable for our grandchildren. In July we will have a family picnic in a local park that provides a playground, supervised swimming, basketball and other activities. You will have the opportunity to meet other grandparents, parents and grandchildren. We encourage you to identify other families that live in your local community so that you can arrange for play dates or outings with them. Please let us know if you would like to help us plan for our July family event. More details will be available soon.

We have learned valuable information at the GAN meetings that we share with our children. They realize more and more that they are not alone in this struggle. Grandparent support, and giving our children well deserved respite time, can only make it better.
We all benefit. We look forward to meeting you soon at GAN events.

Grandchildren Activities Committee