Helpful Suggestions for Organizing Local Support Group
Modified by Lisa Ackerman – (Lisa A Jeff's mom)
- Make folks more aware about autism
- Make new friends with similar interest: autism!
- Help other families with children affected by autism
- Organize local resources to help the children affected in your community
- Make a difference with your time on this planet
I highly recommend starting a support group. We started with dietary intervention topics and sharing ideas – which could also lead to other topics including: medical intervention, special education law, interfacing with local doctors and children treating children affected by autism, finding good therapists, neurology, alternative therapy options, socialization, play dates, activities as a group, and support for parents.
Background:
My husband and I started TACA (Talk about Curing Autism) in November 2000. We did very little to get our initial meeting started and notifying parents. Basically we followed the guidelines in this handout. Our first meeting was 15 parents in our living room. Now TACA has over 300 members with three meeting locations in Costa Mesa, San Diego, and West Hills, California.
What Does a Support Group meeting look like?
- We set up our support group meetings to be informative, informal, and a place for support (hence the name!) Here is what a typical meeting format looks like:
- Start time – 15 minutes: wait for arrivals to all arrive
- 15 minutes – 25 minuets: Announcements, upcoming events, news in the autism world.
- 25 minutes – 80 minutes: educational format of the meeting
- 80 minutes – until done: support round robin. (Have each member introduce themselves, age of child, diagnosis of child, when child was diagnosed, then the questions or comments for the group.) We would give each member 5 minutes to talk – over your meetings will go on for hours!
- Note: typical meetings go for 2-3 hours with an average of 45 people in attendance. Less time is required for smaller groups.
How to find interested members:
- Other parents of ASD children you may have met at Early Intervention Classrooms, regional center, school districts, any other autism therapy sessions, church, etc.
- Ask to post flyer/poster with meeting information in Speech Therapists offices, Occupational Therapy Offices, schools, and any ASD Intervention location, etc.
- Ask the owner/manager of your local Health Food Store (HFS) if you can display a flyer/poster in their store.
- The GFCFDiet Support Group will provide by E-mail a “Master” Poster form which can easily be printed from your computer with specific local meeting information. These posters can be hung in community centers, Health Food Stores, Therapy Centers, Schools, Church Bulletins, Therapy Centers, etc.
- Contact the GFCFDiet.com with information so we can post to The GFCFDiet Support Group Bulletin Board provided for this service. Contact comments@gfcfdiet.com
- Central Location in your Community
- Post on YAHOO GROUPS that have an autism focus. Go to groups.yahoo.com/ and type in AUTISM.
Potential Locations:
- Churches, Temples
- YMCA
- Local Universities
- Local schools
- Therapy Center
- Home (I started here. It was very convenient to have it at home)
- Community Center
- Library
- Health Food Stores (Restaurant)
- Kinko's (some have conference rooms)
- Members company training or conference room
Suggestions for Topic Discussions
- Dinners, eating out, shopping, food co-ops, Bulk ordering of select GFCF Supplies, recipes,
- For those without a computer, you may want to print out a list of testing
- sources, phone numbers, Local Health Food Stores, and markets where supplies can be bought (ie Xanthan gum)
- Consider having a guest speaker if possible, informed local dietitian, DAN doctor, etc.
- Plan a “cooking night” at a local church kitchen with experienced GFCF Moms and Dad’s learning about how easy and great tasting and nutritious GFCF food can taste!
- Homemade GFCF Cookie Exchange, GFCF Cake Exchange, Frozen Meal Exchange,)Subject to be discussed (lunch box ideas, dinners, siblings, etc. Contact person & phone # (optional)
- Sharing medical stories (resources, supplements, treatments, etc)
- Special Ed law presented by a special ed attorney
- Tips & Tricks (for any topic)
- Therapies - Behavioral, Social, OT, PT, Speech
- Favorite local shopping places (for all topics: restaurants, supplies - food & therapy, toys, play areas, etc.)
- Safety for Autistic kids (in house, outside, safety braclets, etc.)
- Dealing w/ difficult behaviors
- Autism & Politics: how to get involved and make a difference
- Autism from a parents view (Find an autistic adult to speak)
- Regional Center & School district: compare provided services
- Working with CAN, ASA & other support groups: how to get involved and make a difference (similar topic huh??)
- A scientist with the latest in Medical Research for Autism
NOTE: It is very easy to find speakers! Just call and ask providers that work with your child or ask other members to help! Many will provide informational presentations (without a sales pitch!!!) to groups at no charge.
Scheduled Monthly Meeting
- In order to provide consistency for support group meetings, we suggest holding meetings on the same day and at the same time every month. (ex: First Tuesday of every month/ last Thursday of every month, etc.) Scheduling meeting times and locations in advance will guarantee your meeting location and times. It will also allow parents to arrange their busy schedules accordingly. Always remember to verify a week in advance that your room is still reserved for your meeting with the correct date and time.
- Notify The GFCFDiet Support Group at comments@gfcfdiet.com with information which can be posted on The GFCFDiet Support Group Bulletin Board. We will need the following information for posting information to the website: City/Town/State, Location (include address if appropriate), Name of Contact/email address/phone if appropriate
Organizing Meetings
- Refreshments (GFCF) · This is a good opportunity to have a “Taste Testing!”
- For the first meeting you may ask your local Health Food Store to provide you with several packages of GFCF Food. These products can be divided up into separate baggies with food item name and where to purchase the product, price/quantity, etc. These baggies can be taken home for children to sample
- Consider contacting some of the individual manufacturers of GFCF Foods that are listed under the manufacturer section on www.gfcfdiet.com.
- Contact Miss Roben's
- Contact Gluten Solutions.com
- Contact Kinnicknicks's
Taste Testing
- Divide food into separate baggies for members to take home to children
- Label each bag with item name and where to purchase & price/quantity – encourage members to take samples home!
- Make it easy on your guest, only serve GF CF foods – that way there is no asking about each food!
- If the food is prepared – have a copy of the recipe available for guests.
- Have each member bring something to share with the group.
Meeting Agenda – How to Stay Organized!
- Free form meetings are nice, but having an agenda keeps people coming back. Agendas could include:
- Organize your support group members in Excel or Access or in a file. Have them organized by school district, type of therapy program, medical protocol being pursued. This way you can refer folks to help each other that have similar needs.
Resources for the Meeting:
- Bring a copy of the following books to the meetings for easy reference:
- "Successful Diet Intervention for Autism & PDD" by The GFCFDiet Support Group
- "Special Diet for Special Kids" by Lisa Lewis, Ph.D.
- " Unraveling The Mystery of Autism & Pervasive Developmental Disorder" by Karyn Seroussi
- " Biological Treatments of Autism & PDD" by Dr.Shaw
- "Dr. Semon's Book, Dr. Crook's explaining yeast problems, etc. if available
Communication
- Make sure you have everyone in attendance fill out attendance provide their information. Include the following
- Name, address, city, state, ZIP, phone number, Email address
- Optional information: school district, childs age
- Start a YAHOO GROUPS that has an autism focus just for your community. Go to groups.yahoo.com/ for more information and directions.
- Communicate via email or a phone tree so not all the communication is done by ONE person calling EACH member. TACA has a bi-monthly newsletter that is emailed to over 300 members (as of April 2002.)
Privacy
- Make sure you understand what parents want to have referrals and which parents want to remain private.
- Never share your group mailing list with anyone with business intentions. Watch what you endorse.
- Respect your members privacy and set rules for contacting each other. We start first with email and then if parents want to set up meetings offline – that is great!
Taking the Next Step
- Create an identity: come up with a name for the group.
- Contact your local congressman/senator for support & help them understand issues for families affected by autism
- Buying products or services as a group for bulk discounts
- Fundraising for autism research or services in the community
- Community awareness: meet a reporter, get a story done.
- Contact your local early start or Regional center to help new parents with newly diagnosed children.
- Contact your local university to get them involved in autism research.
- Learn about all the players in research and services in your community as resources for your group.
How TACA Helps Families
› Adopt a Family Recap
› Family Scholarship Program
› AutismCares Family Support Awards
› Parent-to-Parent Mentoring
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