The Autism Society Event and Education Recordings Archive

It is our hope that by sharing our personal stories and using interactive exercises, we can help everyone, especially grandparents, realize that active participation in the lives of these children can make a difference in the life of the entire family.

This Powerpoint presentation will stimulate thinking and encourage active audience participation. We will also utilize a flip chart for the brainstorming sessions to capture and share ideas.

The following introductory remarks will launch this interactive session:

It started about nine years ago; I’ll never forget it. In retrospect, it was my first real experience with autism. My boss, my mentor, my closest friend and the most stable, in-control person I have ever met was on the phone with me, practically hysterical. She was crying so hard she could barely get the words out. Her two- year-old granddaughter had just been diagnosed with autism. In a former life, I had worked in the health-care industry, so I had some limited knowledge of what it was but no real experience with the symptoms and reality of the diagnosis. I knew I did not know enough to say the right thing. So I said nothing initially. She was partially in denial, so I conveniently joined her there, assuring her that there was every probability that they were wrong. Get another opinion, I said. I'm sure it's a mistake. It will all work out. All the wrong things.

Quickly she calmed down and we discussed what the next steps should be. I look back and realize that I was totally ineffectual on that call. To top it off, I was in another city and couldn’t even hug her. After we got off the phone, I immediately went to the Internet to research the symptoms, treatments and prognosis of autism. It was terrifying. First, the statistics were staggering. At that time, one in every 150 children born in the United States was being diagnosed with this socially debilitating, behaviorally challenged phenomenon. From everything I was reading it looked as though there was not a very vast knowledge of treatment options and really no cure. The prognosis was not good. I put my head down on my desk and cried. Asking over and over, why Joy? She was such a good person. This was only her second grandchild. Why Brooke? I also realized how difficult it was going to be for my friend because she was not in the same city as her family to help them cope. I prayed she would come to terms quickly because the only constant I could find in my research was that early treatment (such as it is) was essential. I needn’t have worried.

True to her inimitable style, she quickly began learning everything there was to know about autism. She researched anything she could get her hands on -- old materials, new materials, any materials. She made lists of questions for her daughter Shelly to ask the doctors and therapists, read books by every expert in the field, encouraged Shelly to immediately schedule speech and occupational therapy for Brooke, and joined the Autism Society. Lucky for me.

She made frequent trips to visit them in order to be as much a part of the treatment as possible. She was quickly becoming Brooke’s biggest advocate. For years I have watched the two of them together, and it is easy to see they have their own very special bond and a relationship that transcends the inner world of autism that these children sometimes inhabit.

It is very strange, but once you know someone dealing with autism you begin to hear similar stories all around you. It seemed that everyone I knew had a friend or a family member dealing with this heretofore unheard of diagnosis. Are you beginning to see where I am heading?

Three years after Brooke was diagnosed, my daughter gave birth to her first child. I already had three beautiful grandchildren (Joshua, Daniel and Rachel) who I adored; however, they were far away in South Carolina. This child was with me in Kansas City. I was going to see him almost daily. I think by now you know what I am going to say. I was now the hysterical grandparent on the phone with my friend, sitting in her shoes. At three and a half years old, my beautiful red-headed little grandson Jonathan had just been diagnosed with an extreme case of autism.

How can I even describe the depth of emotion I felt? I was angry, scared, devastated beyond belief. Why us? I tried to convince myself they were wrong. Of course, the first person I turned to was Joy. I got consolation and assurances of support from many other friends and family, and I appreciated every ounce of prayer and love. But she was the only person in the world who knew exactly how I felt at that moment in time, and I needed her badly. I had to be there for my daughter who was in shock. Joy was, as she always is for me, the practical voice telling me don't get stuck, get moving -- good essential advice. Early diagnosis and treatment is important, if not essential.

And that is exactly what this seminar is all about. “There is something you can do.” Be, if not the impetus, at least the steadfast support system parents and children dealing with this diagnosis need.

At this point, I would like to introduce my friend Joy Rick who will be the speaker and facilitator for the rest of the seminar.

Hi everybody, Jennifer is right. As grandparents, we can make a difference. Actually, I would phrase it, "Get the donkey out of the ditch." However you say it, once the diagnosis is made, don't get stuck. It is easy to get lost in the despair and denial of what has just transpired. Try not to go there. The sooner you accept what you think you cannot change, the sooner you can begin to understand that you can make changes in the life of not only your grandchild, but your child --  small or large, it doesn't matter. Any change is probably going to represent some sort of advancement in their development. Our hope is to start a groundswell of grandparents actively battling autism.

This seminar is designed to take on the road to already established support groups or grandparents wanting to start support groups of their own. Most of us have issues and concerns we are not always comfortable sharing with our children. They have so much on their hands already. We often need a sounding board to help us identify and deal with those issues and concerns. Who better than each other to offer a listening ear, some advice on how to handle a recurring problem, share resources, help us look at situations objectively and sometimes just laugh or cry with us?

I an convinced that every single day we can contribute some assistance in the raising of these children. It doesn't matter where you are in your life. Let me assure you there is something you can do to help. In all probability, you are providing assistance in ways you don't even think about now. When Brooke was initially diagnosed, I was an officer in a Fortune 50 company, and was pretty busy. However, I had resources that not everyone has available and could at least offer some financial assistance to supplement the little federal or state assistance that is still questionable in most areas. I was also able to fly home frequently and be included in many of the treatment and educational decisions.

Just a few months ago, the statistics were updated to show that in 2009 one in every 110 children born in the United States is being diagnosed with autism. What is going on? We need to unite as a force, in addition to our children, to ensure that the proper attention is being paid to research and treatment. Why is it that all research funds seem to go to AIDS and breast cancer? Part of the reason is the support of the American public, many of whom have never even heard of autism and the problems involved in the diagnosis. We need to increase awareness of how serious the problem has become and assist in raising more funds for research. If a cause can be identified and treatment options found or developed, how much could the lives of these children be improved? Even if there is no cure, who is to say they couldn't be effectively treated and their quality of life affected dramatically?

In this first interactive exercise, I want you to share your feelings about how you felt when your grandchild was initially diagnosed with autism. Who did you share those feelings with? Who really understood and tried to help you, and who said everything you wanted to hear and joined you in your denial the way Jennifer initially did? Try to be as honest as you can so the exercise is effective.

These introductory comments are followed by three additional sharing exercises, including examples from our experiences. The next exercises are “Identifying Ways to Help,” “Life Changes Since Diagnosis” and “Concerns for the Future.” We then have a few closing remarks.

In summary, we believe this session is designed for encouraging not only grandparents, but everyone to get involved in some way to take up the cause of autism. Our goal is to make everyone see that there is something they can do. We can all take action in many ways, especially by helping to raise awareness and funds for more research and treatment options.