Building Your Own Support Group

WORDS
Jamie Anne Richardson
PUBLISHED
May 2012 in
DFWThrive
UPDATED
April 20, 2012
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When my daughter was diagnosed with dyslexia last summer, I knew I’d need some help. Texas Scottish Rite Hospital for Children’s center for dyslexia and learning disorders in Dallas sent me home with folders of information that were tremendously educational, but sometimes I just craved another parent to talk to. I looked for a support group, but I couldn’t find an active one that fit my needs.

My daughter attends Wylie ISD, and the dyslexia program there is amazing. Many parents relocate their newly diagnosed kids to that district, but unfortunately, there was no longer an active support group. So I revived it.

WHAT'S THE POINT OF A SUPPORT GROUP?
Evelyn Madu, a certified academic language therapist at Texas Scottish Rite, encourages support groups for parents of children with learning disabilities. “Everyone needs that support to know someone is right there with them,” she says.

My daughter’s assessment specialist at TSRHC, Stephanie Forbis, says that a parent who fully understands their child’s diagnosis has a big impact on the child’s self-esteem. Educating both the parent and child about what their specific learning difference is and what it means goes a long way toward building self-confidence.

A support group is the perfect place for that kind of growth and understanding to take place. It gives me hope to see that many of these other students made it through the challenges my daughter is facing. The input of other parents showed me how to teach my daughter what her learning difference is and how it will affect her life. They pointed out the positive aspects of dyslexia that I’d never noticed before. Talking to other parents, I realized that some of the struggles and triumphs that I see in my daughter are not random but are part of the overall diagnosis. I would never have reached this degree of understanding if I hadn’t actively sought out a group of supportive parents.

This connection even allowed me to meet a woman who has dyslexia and was able to help me teach my daughter how to explain her learning difference to others. I knew my daughter had mastered her little speech when I heard her tell friends, “I’m dyslexic. That means I can’t read like you can, but I’m still smart. Walt Disney was dyslexic, and he created Mickey Mouse and got famous. One day I’m going to be famous too.”
 
HOW DO I START A SUPPORT GROUP?
If you’ve looked for a support group within your specific special need and haven’t found one, why not start one yourself? You’re not alone in your struggle, and you can be assured that others have the same longing for a connection. They just don’t know where to find it.

1. Collect names of potential group members. When the dyslexia department sent a note home from school saying they were interested in revamping the parent support group, I was pumped. This is something I’d desperately wanted to do, but I didn’t know how to go about it. I contacted the district’s coordinator, Diane Spearman, and we met to discuss my goals and ambitions for the group. I explained how I wanted it to be an open sharing of ideas and experiences. She agreed to introduce me as the new coordinator at the upcoming open house. I set up a sign-up sheet and began contacting interested parents.

2. Decide what your group should look like. That initial email yielded the desire for a Facebook page for the group. That was a super-easy first step. I then sent out an email saying it was live, and I distributed a flyer through the school to let parents know.

We’ve also discussed the possibility of meeting as a group and having an occasional guest speaker. There used to be a website, but we decided that a Facebook group was a better arena for open communication.

3. Offer valid information. There is tons of bad information about learning differences on the Web. Lots of people are willing to rob your pocketbook by offering fraudulent cures. Before providing any information or documentation within the support group, I always verify the legitimacy. A great starting point is ldonline.org.

4. Establish boundaries. Forbis encouraged me to make sure the support group was actually supportive of what the child is doing. Support groups aren’t designed to change a parent; they’re designed to support them. If a group is run by one or two parents with underlying agendas, the support group can quickly become a long commercial for theories. Such sales pitches should be limited so all parents can feel open to share and express their views, frustrations and victories.

5. Change the vision as needed. My original vision for the group was to have a meeting place for district parents. The online support forum would naturally lead to large parent meetings. What actually happened was completely different. Parents of children with learning differences have an initial surge of desiring support when their child is newly diagnosed, just as I experienced, but as the student gets into the groove and starts finding success, that need dwindles.

What I’m finding myself doing is meeting almost once a week with parents of newly diagnosed kids. I’ve become the go-to source for that initial comfort and hope. Quite honestly, I love that role. I’m still hoping the larger setting will catch on, but I’m taking the organic approach and allowing the group to build itself.

6. Stay on top of it. I am in constant contact with the district coordinator, and although we are maintaining this support group outside the umbrella of Wylie ISD, I am supporting the parents of the district. The great thing about this setup is that the Facebook group is open to any and all parents of children with dyslexia, not just those with students in Wylie. I link to articles, share the group on my own page and try to make myself available to new parents as much as possible.

7. Stay on top of it. I am in constant contact with the district coordinator, and although we are maintaining this support group outside the umbrella of Wylie ISD, I am supporting the parents of the district. The great thing about this setup is that the Facebook group is open to any and all parents of children with dyslexia, not just those with students in Wylie. I link to articles, share the group on my own page and try to make myself available to new parents as much as possible.


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