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In July I was privileged to attend and speak at the 12th International Fragile X Conference in Detroit, MI. The conference is dedicated to sharing information, challenges, and successes around Fragile X Syndrome (FXS) and associated disorders. FXS is the most common cause of inherited mental impairment. Its effects range from learning problems to significant intellectual disability and autism. Symptoms often include behavioral disorders and delays in speech and language development.
The conference draws families, clinicians, and researchers together for five days of sessions focusing on a wide range of topics including results of clinical medical trials, strategies for maintaining a balanced emotional state, and effective teaching methods. It is jam-packed with information and ideas to help individuals with FXS live more productive, happy lives. It also brings together scientists and clinicians working to improve existing interventions and develop new treatments including, ultimately, a cure.
My husband and I are blessed with two sons who both have FXS. Gabe is 6-and-a-half and Tama is 4. Both are developing verbal language skills but they are quite delayed. Instinctively we knew that they understood much more than they were able to express so we sought ways to help them communicate. Since Gabe's diagnosis four years ago, we have used a combination of augmentative/alternative communication (AAC) including sign language, picture exchange, picture schedules, multi-talk buttons, interactive computer programs, and finally MyTalk on the iPod.
At the International Fragile X Conference I teamed up with Bick Pratt, founder of MyTalk to present Augmentative and Alternative Communication in the iWorld: Two Parents' Personal Experience with AAC Applications for the iPhone, iPad & iPod touch. Advances in technology, such as the new iPod touch, iPad and iPhone technology can offer a more affordable, portable alternative to traditional AAC devices and offers a platform for AAC software. The software displays visual symbols (or buttons) that, when pressed, play pre-recorded messages or sound clips. These messages can be played individually or in sequence to create sentences. You can use symbols, downloaded images from the web, or take pictures with the camera phone. Both of my children quickly learned to navigate the iPod touch and to use the software to get their needs met. Older kids and adults like the technology and portability.
Our presentation addressed several common language complications among those with FXS and explained how AAC can help overcome each.
Approximately 15 percent of males with fragile X do not develop language and many who do have limited vocabulary. Obviously AAC can assist expressive communication but it can also help extend vocabulary by offering new and different choices. Since individuals with FXS have difficulty with auditory processing causing receptive language delays AAC can be offer visual cues to increase comprehension for those who learn better visually. Unable to express themselves, many individuals exhibit challenging behaviors. AAC offers an outlet for expression, helping individuals feel understood.
Kids and adults with FXS often have difficulty with language recall. Adding visual aides through AAC to help tell a story, asking a question or offering choices supports their ability to find the words they need.
Anxiety can be a significant problem for those with FXS. Transitions or any deviations in schedule, environment, or personnel can increase one's arousal level. AAC can provide a selection of choices or a visual schedule and can help them to understand and prepare for changes in routine.
Many people with FXS have difficulty putting words together to form sentences. By pairing auditory and visual stimuli, AAC can show how words are combined to create sentences. Phonics and often an ineffective reading strategy for individuals with FXS. AAC offers an alternative method by encouraging memorization of sight words.
For More Information:
Kelli Ngariki can be contacted at kelli_strand@yahoo.com.
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