Mommy. Daddy. I love you.
One of the joys of parenthood is hearing your child say these words and phrases for the first time. Toddlers and teenagers alike are notorious for having
their own opinions and preferences. Being able to share these thoughts and control some parts of their world is an important step in child development.
But what do parents do when their child isn’t able to talk?When sign language isn’t an option?
Rett syndrome, and other similar neurodevelopmental disorders, robs individuals of the ability to communicate. When verbal communication is no longer an
option, families develop incredible means to communicate. Spend time with a family of a girl with Rett syndrome, and you will witness the incredible
bond between parent and child. Parents can tell you which look means “I’m hungry,” which sigh says “I’m bored,” which laugh says “This is so much fun,”
and which glance is a request for a favorite movie. The love and trust that a child feels for a parent or sibling shines through without speaking.
Excitement over a new toy or skill is palpable. Just as parents of infants can interpret a cry, parents of older nonverbal children learn what different
sounds and expressions mean. As one mom shared, “The instinct just grows.”
Called augmentative communication devices, these can be as simple as a cards with the words “yes” and “no” to as complex as a computer that can track eye
movements. These options have obviously been a positive step forward. Amazingly, some parents and families have developed their systems that can be
quite complex and attempt to give their family member the ability to communicate more complex ideas. As wonderful as these systems and devices can
be, there are parents who say that their daughters connect with them better than devices. Additionally, communication on the go is faster and easier
without carrying around pictures or computers.
As incredible as this unspoken communication may be, parents of children with Rett syndrome continue to fight for their daughters. Augmentative communication
devices, medication to ease seizures and breathing irregularities, speech therapy, and, most importantly, a CURE. These families continue to fight.
Fight for the awareness that being nonverbal doesn’t mean that you can’t understand what is being said to or around you. Fight for their daughter’s
right to advance in school and prove her ability to learn.
October is Rett syndrome Awareness Month.
Previous social media campaigns have been built around #notspeaking and #LOUD to highlight the difficulties of those who are nonverbal. Advocates for Rett
syndrome continue to use their voices for those who can’t. Maybe you can too. And we can all work together for the day that a girl with Rett syndrome
can say “I love you” out loud. You can learn more by visiting www.rettsyndrome.org.
“There are some people who could hear you speak a thousand words and still not understand you. And there are others who will understand without you even speaking a word.”—Yasmin Mogahed
By: Lauren Baggett, MS, CGC