How To Start A Support Group for Apraxia, Autism, Epilepsy etc.

“JOIN OR START A SUPPORT GROUP.   There is strength in numbers. Band together with other parents in your own community and hold regular meetings. If you can’t find enough parents locally, check out Internet listservs where compassionate and intelligent advice may come from a kindred soul who may be a thousand miles, but just the click of a mouse away.” ~The Late Talker book St. Marteen’s Press 2003 Agin, Geng, Nicholl

I’ve run support groups for “late talkers” since 1999.  My first meeting was written up in the hospital’s publication, “Under the Umbrella” for Children’s Specialized Hospital’; “Unlocking the Words, Helping Children with Apraxia“, which was picked up by The Star Ledger, one of the largest newspapers in the US, who wrote “Advocate for a Little Known Disorder“, which was read by a director from Inside Edition, Stefanie Linzer who produced a nationwide segment hosted by Deborah Norville on “Apraxia” which they kept on their website as a resource for years.   That was basically the first year or two of our support group before other segments, conferences, and the book The Late Talker.  The inspiration behind it all which all started with a “small” support group at Children’s Specialized Hospital, are my two boys Dakota and Tanner who both were “late talkers’   Today they are 14 and 16.  Tanner my 14 year old apraxic son is going into honor’s classes in high school next year as he just shared when he was recently interviewed by KidsEnabled,  and my other son who’s been diagnosed in the past as ADHD and CAPD as well as gifted (tested 99th percentile by the public school) is currently enrolled and excelling in a college that is also a high school for those that qualify.  In spite of diagnosis of ADHD and CAPD Dakota has never been medicated and has instead been put onto essential nutrients.  Both are examples of the power of advocacy and early interventions both traditional and what some may consider “alternative” but really not as it’s including essential nutrients in their diet.  Either of them could have easily fallen through the cracks if left for a still ignorant society and educational system for these “special learners” to decide their fate.  So it’s up to us at times.  Over a decade of outreach both in person and online has provided me with the knowledge that support groups are more important than most of us remember to share.  I try to remember with all the other advice to help and encourage others to start local or online support.  Not only do they let each of us know “you are not alone” but together as a group we have a much better chance of making a difference in bringing a voice to those we are outreaching for…what I call the “true” silent majority -the verbal disabled.

Sometimes it takes someone to ask me for me to sit down and find the time to put all my advice in one place that is easy to find.  So this is for you Concha Melo who asked me on our apraxia.org support page to share how to start that support group for “late talkers” in the Philippines 🙂

When you start a support group you can be a bit selfish and choose topics that you want to know more about.  For example are you having trouble with your child’s IEP?  Invite a special education attorney in to speak.  Are you dreading possible separation anxiety on the first days of preschool?  Invite in a child psychologist to share tips on how to lesson anxiety for your child and you on the first days of preschool.  Are you not sure what PROMPT is in comparison to other forms of speech therapy?  Invite a PROMPT therapist and other SLPs in to present.  Or do what I did and host a workshop where all types of therapies are demonstrated for groups of parents as they move around the room.  Professionals I found are willing to come to share because they want to help, and it also is a way to let us know they are there to help.

A support group the best place to learn what therapies, schools, professionals, and strategies are working for the majority.   This goes for both in person support groups as well as online support groups.  While they are both great forms of support each offers benefits over the other.   In the online groups I’ve found most tend to ask questions when they are new, or have a problem.  Many don’t share the good day to day news online, and less reach out to help others when questions that are asked.   On the other hand online support groups offer animosity for those parents or professionals to share situations and seek advice which they may not have felt comfortable doing face to face with others they know.  In particular if it’s a question about someone (parent or professional) who may also be a member of the in person group.

That’s almost completely opposite of in person group support.   While there are new members that ask questions all the time, there are far more questions and comments from seasoned members and much more sharing and support on day to day comments and successes.  While friendships have formed online, it’s much more common for the in person groups where not only are the parents now friends but their children become friends as well as they go on outings together.  There are planned parties and events.  It’s a place where if you are crying you get real hugs from those that understand you.  I also find it’s highly unusual for there to be any “flaming” or arguments with in person groups.  Not that it’s common online but there are more open disagreements online.

I would say that online support is overall better because you can get support in the comfort of your home.  But for a new member just showing up at a meeting with others can provide a sense of security that can’t be explained.  When I ran monthly support meetings out of both Children’s Specialized Hospital and St Barnabas Hospital for years, we had to take reservations because the rooms would only fit 100 people.  We had some excellent meetings.  If you want to get an idea of what our meetings looked like you can see one of the meetings in the Inside Edition segment on apraxia.   In person support groups provide a clearer picture of what’s going on in the grassroots level in your backyard.   Online support groups provide a clearer picture of what’s going on grassroots worldwide.

How to start a support group on Facebook

• Go to your your home page and click Create Group in the left hand column.
• If you have existing groups, you may need to click More before you see this link.
• A pop-up box will appear, where you will be able to add a group name, add members and select the privacy setting for your group.
• Click the Create Group button when you’re finished.
• Once the group is created, you will be taken to the group’s page.
• To get started click at the top right of the page and select Edit Group.
• From here you can add a group description, set a group email address, add a group picture and manage members.

Also information on how to start a support group on Yahoo.

In person support groups don’t allow for censorship as everyone shares what they want with each other.  The person running the meetings can choose the speaker or what will be discussed but if someone says something that the speaker doesn’t like, nobody is going to be able to delete the comment.  That’s what I like about in person support groups.  Online groups mostly have moderators.  Depending upon who they are, open minded and knowledgeable, or close minded and ignorant, they alone decide what is beneficial for you to read, and ultimately what is best for your child.  As a new parent you may not know that what you are reading is censored.

For example when I first shared about fish oils with an online group for apraxia back in 1999 before I ran online support myself, when I asked this other group “can fish oils to apraxia be like vitamin C to scurvy?” after seeing the remarkable first effects in my son Tanner as was later written up Dr. Stordy’s book The LCP Solution, as well as my book The Late Talker (links for both here)  I was asked to take the question elsewhere because the moderator decided that fish oils were off topic.   Just like fish oils a new example of benign but healthy and effective essential nutrition would be (the original) Nutriiveda.  Unlike fish oils however which after a decade are finally accepted in the general population but still not specifically researched for their role in accelerating speech, Nutriiveda after just 18 months due to the overwhelming positive effects of (the original) Nutriiveda is currently being planned for preclinical research.  But the bottom line, it was due to support groups both in person and online for the sharing of how essential nutrients help.

A support group brings a strong voice for advocacy for each member as an individual and for the group.

Information I sent out to our private CHERAB group on how to start a support group:

Many parents find it overwhelming when they have a child that is a late-talker. Is there a problem? Who should we see – a doctor, a pediatrician, a speech pathologist? Are we over-reacting? Do others notice that our child is not talking?

How many times have we heard: “Einstein didn’t talk until he was five years old”? Or how about “he will talk when he is ready…” or “she doesn’t need to talk, you give her everything she wants”.

Often these comments are from well-meaning family and or friends, who have no idea of the impact their comments have on you and even your child.

It is validating and helpful to be with others who know how you feel, and who really “get it”. Speak to others in your area about where to go to get service, clinicians that have worked with children like yours, great and not so great programs and services.

You can bounce ideas of each other, share information, and even give your kids the opportunity to have a playdate with other kids who are like them.

A support group can be a couple of parents meeting with their kids at the local MacDonald’s, a group of parents sitting around a kitchen table exchanging information and telephone numbers, or a more formal, regular meeting with a larger group of families and even guest speakers. If you would like to meet up with other parents in your area, please send us an email.

Interested in starting a group? Here are a few pointers…

Set up an email address where you can receive correspondence from interested people. If possible, have a telephone number where people can reach you to get more information. Link to existing websites, to get your name out there for parents who may be looking for support in your area.

Pick a place to have your meetings, and keep it to that same place – that will make it easier for people, knowing that you always meet in the same place. A community centre, church basement, etc. — anything free.

Meeting frequency should be determined by your members – monthly, quarterly, whatever works best for all.

Consider forming an executive for your group, so that the responsibilities in the group are defined. Basically, a person to chair the meetings, and another to take notes. Assign a person to bring refreshments to the meeting — a box of donuts, a coffeemaker & a bottle of apple juice for the kids.

Setting an agenda is a good idea, just so people know what to expect. Poll the attendees at the end of the meeting to see what they would like on the agenda for the next meeting.

Will you allow parents to bring their children to the meeting? Will you have a babysitter, or will the children have to be watched by their parents?

Consider inviting guest speakers, perhaps your own SLP, a community worker, someone from your child’s school. The possibilities are endless!

Here are some more ideas from the Self Help SourceBook (online); a wonderful resource with some great suggestions.

“Think “Mutual-Help” From the Start.  You do not have to start a group by yourself. There are others who share your problem.

Find a few others who share your interest by circulating a flyer or letter that specifically cites how if one is interested in “joining with others to help start” such a group, they can contact you. Include your first name, phone
number, and any other relevant information. Make copies and post them at places you feel are appropriate, e.g., library, community center, clinic, or post office. Mail copies to key people whom you think would know others like
yourself. You can also ask if the notice might be published in your local church bulletin and newspaper.

When, hopefully, you receive a response, discuss with the caller what their interests are and what you would like the group to do. Ask if they would be willing to share the responsibilities of organizing a group for a specific
period of time. By involving several people in the initial work of the first meeting, they will model for newcomers what your self-help mutual aid group is all about: a cooperative effort.

Also, consider obtaining the assistance of any professionals who may be sensitive to your needs and willing to assist you in your efforts.  Physicians, clergy, and social workers may be helpful in various ways, from providing meeting space to locating needed resources.

Inside edition segment on apraxia hosted by Deborah Norville

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Find a Suitable Meeting Place and Time
Try to obtain free meeting space at a local church, library, community center, hospital, or social service agency. Chairs should be arranged in a circle and avoid a lecture set-up. If you anticipate a small group and feel comfortable
with the idea, consider initial meetings in members’ homes. Also, try and set a convenient time for people to remember the meeting, e.g., the first Tuesday of the month.
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Publicize and Run your First Public Meeting
To reach potential members, consider where they might go to seek help. Would they be seen by particular professionals or agencies? If the answer is yes, try contacting these professionals. Posting announcements in the
community calendar section of a local newspaper, library or community center can be especially helpful. The key is to get the word out.  The first meeting should be arranged so that there will be ample time for you and other core group members to describe your interest and work, while allowing others the opportunity to share their view of how they would like to see the group function. Identify common needs the group can address.  Although you do not want to overload you new arrivals with information, you do want to stress the seriousness of you intent and the necessity of their participation. Make plans for the next meeting and consider having an opportunity for people to talk and socialize informally after the meeting.
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Future Meetings
For future meetings consider the following:

Purpose: Establish the purpose of the group. Is the purpose clear? Groups often focus upon providing emotional support, practical information, education, and sometimes advocacy. Also determine any basic guidelines your
group will have for meetings (to possibly ensure that group discussions are confidential, non-judgmental, and informative.

Membership: Who can attend meetings and who cannot? Do you want membership limited to those with the problem? Will there be membership dues? If so, how much?

Meeting Format: How will the meeting be structured? How much time will be devoted to business affairs, discussion time, planning future meetings, and socializing? What topics will be selected? Can guest speakers be invited? If
the group grows too large, consider breaking down into smaller sub-groups of 7 to 12.

Roles and Responsibilities: Continue to share and delegate the work and responsibilities in the group. Who will be the phone contact for the group?  Do you want officers? Consider additional roles members can play in making
the group work. In asking for volunteers, it is sometimes easier to first ask the group what specific tasks they think would be helpful.

Phone Network: Many groups encourage the exchange of telephone numbers or an internal phone list to provide help to members between meetings. Ask your membership if they would like this arrangement.

Use of Professionals: Consider using professionals as advisors, consultants, or speakers to your groups, and as sources of continued referrals and information.

Projects: Always begin with small projects, then work your way up to more difficult tasks.

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Final Thoughts
Stay in touch with the needs of your members. Periodically ask new members about their needs and what they think both they and the group can do to meet them. Similarly, be sure to avoid the pitfall of core group members possibly forming a clique.

Expect your group to experience “ups and downs” in terms of attendance and enthusiasm. It’s natural and should be expected. You may want to consider joining or forming an informal coalition of association of leaders from the
same or similar groups, for your own periodic mutual support and the sharing of program ideas and successes.
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Clips from my book The Late Talker (possibly some of this was cut from the final book- can’t remember 🙂

Beyond accessing information, the Internet has supplied a wonderful way for parents to connect with each other across the country, and across the world. No longer are you limited to the support of others in your own local community. No longer are you limited by geographical boundaries. Through web sites, listservs, e-zines, and chat rooms, you can find a sympathetic ear for moral support, and for hard, practical advice, twenty-four hours a day, seven days a week. Who better to provide wise counsel than another parent who has already experienced a situation that you are nervously encountering? As one mother put it, “Navigating the terrain in the world of the developmentally challenged can feel like wandering around in the dark with blinders and no flashlight. Any helping hand is a welcome and comforting sight.”

The Internet is particularly helpful in linking people together who are enduring problems that are not widely known, or are just beginning to gather attention, as well as people who live in rural areas, or have disabilities that make traveling difficult. Time and time again, we have heard parents who had been concerned that their child was more than “just a late talker” express immense relief at finding other parents in the same dilemma. Just the knowledge that they were not alone gives strength and hope. Typically, in a week of postings on the [email protected] list you’ll find some newcomers, glad to have discovered an explanation for their child’s condition. You’ll also find other more experienced parents offering useful information on a range of topics: everything from speech therapy to the benefits of fatty acid supplementation to encounters with the insurance companies and school system. Some will be sharing joyful moments of progress in their child’s journey toward speech; others will be taking advantage of sympathetic ears to let off steam. To give you a sense of what parents feel about the benefits of support groups and the Internet, here are some examples taken from the list:

• “I feel like crying and doing a cheerleading dance at the same time. Thank you. Thank you. Thank you—for supplying all this information. Finally, I have an explanation,” wrote the mother of a four-year-old boy.

• “I am so relieved to finally find a support group of people who know what my son and I have been going through,” wrote Janice, introducing herself as a new member.

• “Without places like this to vent, without people listening who might have had like experiences, the alienation and isolation is one dark pit,” wrote another mom.

• “This site was an angel from above that happened on my computer one day. As a result, I have learned so much and been able to help my son so much more,” commented Robyn Williams, mother of Jacob.

• And another mother, after an e-mail expressing her fears and frustrations: “Sorry…just had to vent a little. I have nobody else to talk to who would even begin to understand.”

The online Internet connection is a dynamite tool. In fact, in a New Mexico State University survey, a staggering 82 percent of parents said that they obtained the “most helpful information” about apraxia from the Internet. You can use e-mail to arrange everything from individual get-togethers with other parents and their children, to group meetings involving expert speakers. The CHERAB Foundation has a growing number of associated groups throughout the country and welcomes parents who wish to step forward and initiate groups in their own areas. It’s not as difficult as you might think. A support group can have two members, or two hundred members. You could meet for a weekly coffee klatch at someone’s home or at a coffee shop. You could simply organize play dates with other parents and their kids. Or, you could organize professional monthly meetings at a hospital or community center with specialist presenters, such as doctors, SLPs, and special needs attorneys.  One mother told us how beneficial the support group meeting was in opening her husband’s eyes. She says that he was in denial until he attended an apraxia meeting where an attorney was discussing IEPs. “My husband saw this was not just a bunch of moms sitting around complaining about their kids. He heard concerned parents talk about what is involved with getting our children the appropriate education. It made a difference,” she says.

Support groups can make a difference. And you can make a difference. Your child can have a bright future, especially if you follow all of the advice in The Late Talker.”

Read more about The Late Talker book

 

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Written by Lisa Geng, mother to two boys that were both “late talkers” who are doing great today. President and Founder of the Cherab Foundation, and Co Author of The Late Talker book St Martin’s Press