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5563 Autism is a Family Affair: Are You Communicating? - Let's Talk

Saturday, July 9, 2011: 3:15 PM-4:30 PM
Sun 1-2 (Gaylord Palms Resort and Convention Center)
This general discussion session will provide a totally interactive forum targeting not only grandparents and parents, but educators and service providers. We will encourage the group to share their experiences, feelings, concerns and advice involved in caring for someone on the spectrum. We will discuss day-to-day struggles, future concerns, coping mechanisms and care options. Come prepared to talk, share feelings and make some new friends.  TARGET AUDIENCE: Grandparents, Parents, Care Givers, Educators, and anyone who frequently interacts with a child on the autism spectrum.


 As grandparents of children on the autism spectrum my best friend and I wanted to share some of the lessons we have learned in ways to help not only our grandchildren but also our children live with this diagnosis. Last year we prepared and presented a general session at the conference entitled “Grand parenting a Child with Autism, There is Something you can Do.” It was our hope that by sharing our personal stories and using interactive exercises we could 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.

 What we quickly learned is that everyone in attendance wanted a forum for discussion. They wanted to relate a story, share some advice, get some advice or discuss their feelings and personal experiences. We presented some of our prepared material, but made a decision to realign the format of the session to include as much of their dialogue as possible.

 This led us to propose that this year we conduct just such a discussion forum as a general session.

 Following is a proposed structure and introductory remarks for the discussion session:

 Hello everyone. My name is Jennifer Knauer and I would like to welcome you all here this morning,

I would also like to introduce my best friend Joy Rick who will be the speaker and facilitator for the majority of this endeavor. We both have a grandchild on the spectrum. The short video you have been watching is both of our families and these two special folks are Joy‘s granddaughter Brooke and my grandson Jonathan. Say hello guys. Can you both hand out the sheets to everyone as we practiced. Thanks. You can both go now, but thanks for coming and saying hi. Can you say good-by to everyone.

Just a little background for you, Brooke is 11 and was diagnosed at about 18 months of age. After sharing some of Joy’s ups and downs during those early years it was only a few years later when Jonathan was diagnosed. At that time I can tell you the words support system took on a whole new meaning for me. Believe me, shared experiences can be vitally important to your mental health. I know. At this time, I would like to introduce my friend Joy Rick who will be the facilitator for the remainder of the session.

 Hi everyone. Last year we presented at the conference in the hope that some of our shared experiences could help others. About midway through, it turned into a very interactive discussion forum, so this year we wanted to try to structure just that. A time for all of you to have a chance to share your personal stories with each other, discuss problem areas you are experiencing, and hopefully discover some tips that you can use in your everyday journey that will be of comfort or practical assistance to your family.

 Here Joy would assess the audience for size to see if we break into groups and discuss and then reconvene for conclusion, or just keep the entire discussion open for a smaller group.

So, are you ready to talk?   If you are a grandparent, I know a lot 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.  If you are a parent, I’m sure you have a different set of concerns to share and maybe some advice on what we as grandparents can be doing that is helpful or not.   If you are an educator or service provider, I am sure you also have stories of families or children you have worked with or been exposed to. 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 some situations objectively, and sometimes just laugh or cry with us. Don’t worry we brought plenty of tissues.

 The handout that Brooke and Jonathan gave you contains a list of possible discussion topics. We can use that as a starting point, or if you have something else you want to begin with, just jump in and let me know.

 Here is the list of proposed topics.

 Life Changes Following Diagnosis - Good and Bad

  • Knowing Where to go for Help
  • Developing  a Support System
  • Education on Autism
  • Evaluating Treatment Options

 Everyday Concerns

  • Financial Issues
  • Care Givers (Therapy Options)
  • Sibling Issues
  • Schools
  • Organization of Paperwork, Schedules, Transportation, etc.

 Future Concerns

  • Education
  • Work/Life Skills
  • Independence
  • Laws
  • Long Term Care

 Sharing Feelings

  • Denial and Grief
  • Acceptance (How long to get there)
  • Lack of Understanding
  • Judgement of Others
  • Never Ending Responsibility

In summary, we believe encouraging grandparents, parents, educators and service providers to share concerns, feelings and issues involved in raising a child on the spectrum will result in raising awareness of the need for funding research and the development of ongoing treatment option advances.

 Thank you for your consideration of our proposed session and format.

Learning Objectives:

  • Provide a forum for open discussion for mainly families, but also educators, and providers to be able to share advice, ideas, and concerns.
  • Give families the opportunity to see how others are developing strategies and coping mechanisms for dealing with those on the spectrum.
  • Openly share feelings in a safe environment where others can not only understand, but educate with their own experiences.
  • Hopefully show families (especially grandparents and parents) how invaluable the conference and ASA can be in funding and facilitating research and future treatment options.

Content Area: Life with Autism


Jennifer J. Knauer, SCRP

Jennifer worked in healthcare and human resources at AT&T for 19 years. In her role as Associate Director of Relocation, she was a frequent speaker and planner for the national Employee Relocation Council conventions. Her seven-year-old grandson has autism and Jennifer actively participates in his development.

Joy Rick, B.S., M.A., SPHR, CCP

Joy worked for AT&T from 1967 until 2005. From 2001-2005, she was Corporate Vice President and Secretary of the Board of Directors. She is a published author and speaker. She is a member of the Board of Directors of the Illinois Center for Autism. Her granddaughter is on the spectrum.