AMERICAN
HYPERLEXIA
ASSOCIATION
by Sheri Cicirelli Sheri Cicirelli is interested in helping others organize conferences on hyperlexia in other areas. She can be contacted at sc2mc@ sojourn.com or 9000 Greenwood Rd., Jackson, Michigan 49201.
With patience, determination and organization, you can educate your community about hyperlexia. Educating those who have a relationship with your child is good, but look at the whole picture; think bigger and better!
The goals of educating the community are to help others understand the uniqueness of hyperlexic children; to get children the services and intervention needed so that they can have the opportunity to reach their fullest potential; and to help families and professionals recognize the syndrome in other children.
One way of accomplishing these goals is to put on a conference in your area. In March 1997, my dreams came true, and the conference I organized was very successful. It was the first of its kind in my state, but hopefully it won't be the last. The impact it had on my community and the lower regions of my state is more than I'll ever know! I invited a speech pathologist from The Center for Speech and Language Disorders in Elmhurst, Illinois to speak. An occupational therapist or a parent would also make a valuable contribution. Anyone knowledgeable about hyperlexia can be effective. I made up a flyer that we sent to schools, colleges, some known families that have hyperlexic children, and doctors. We also used the hyperlexia listserve and the hyperlexia homepage on the Internet, thanks to AHA board member Ted Whaley. The school system took care of everything else. I kept checking to make sure they covered everything. In three weeks of time we had gone over the 150 attendance limit. We decided to take down tables in the meeting room so we could allow an additional 30 people. I stayed involved as much as possible to assure the conference would be successful.
I also included a few vendors to set up items that I knew would be of interest to the audience. These included the American Hyperlexia Association, Center for Speech and Language Disorders, a local toy store that specializes in unique, educational materials, and the Autism Society. DK Book Distributor would also be a good one.
We used the facilities of a local college for the conference. Find out where your district holds its workshops. Participants had lunch on their own, but we provided drinks and snacks. Handouts and a schedule are very helpful. The impact of having a conference is not immediately measurable, but it is the beginning of the domino effect.
Make contact
The first thing I did was approach an administrator. I chose the one who attends my child's annual review and my monthly team meetings. At first she questioned if there would be enough interest because hyperlexia is not common and is not a medical diagnosis. She asked me to prove the interest, and so I did. I wrote to every school district in lower Michigan. Eighty percent responded with a strong interest in a hyperlexia conference. The second issue was cost. I suggested that we charge outside county professionals $20 to attend and all families should attend free. Donations were also accepted from outside sources, like the state level autism group.
Advertise and inform
We set the date and began advertising. It was a great time to do a story in the newspaper about hyperlexia and the upcoming conference. You have to educate the newspaper on the importance of doing an article. I used the thought of how the paper was helping our children and our community and the impact they would make. I also did a follow-up letter to the editor to praise the writer, photographer and newspaper on the impact they did make. This will encourage them to do more articles like this in the future.
Evaluate to improve
After the conference we received 74 returned evaluationÑthe best ever in returns according to the school district. Eighty percent rated the conference high. Speech pathologists and parents were most generous in their ratings. Most critical were teachers and pychologists. The most valuable input were about intervention strategies, relationship to other diagnoses, educational accommodations, examples, specific material (games, toys, and so forth), the handouts, and video coverage.The suggestions for improvement included an interactive format (this is tough to do in one day over a subject that most have never heard of), occupational therapist representation, more parental input and coverage of older hyperlexics.