Landau-Kleffner Syndrome: Where do we fit in?
By Andrea Tyler
My daughter has a rare brain disorder, called Landau-Kleffner Syndrome. (LKS) By all technical definitions she is not considered “deaf” or “hard of hearing”. She has lost the ability to speak verbally, does not process spoken language or environmental sounds, and appears most of the time to be completely mute.
Landau-Kleffner Syndrome (LKS) usually has an onset between three and seven years old. My daughter developed normally and hit all of her milestones on time or early. At eight months, months, she started saying “da-da”, and by ten months, she had a burst of words that included “kitty” and even “thank you”. When she turned two, she seemed to be losing some of her vocabulary, and we began seeing little eye blinks. We took her to her pediatrician and she thought she was having seizures, later confirmed by an EEG. By the end of that month she could no longer speak at all, appeared to be deaf, and was having about 30 seizures an hour. Fortunately, we were referred to an early childhood program, and it was the skilled clinicians there who first recognized the signs of LKS. Many children with LKS go undiagnosed or misdiagnosed, often with autism. We were set up with a 24 hour video EEG to determine if my daughter did in fact have LKS and the results were confirmed. Children with LKS are hit with seizure spikes in the brain during their sleeping hours which affect the communication area of the brain
When I started this journey with my child, as she rapidly lost the ability to respond to sound and to communicate, appearing to be deaf, I did not know where she would fit in. I felt isolated, alone, and very unsure of her future. As I searched the internet for information, it was clear this was a hard syndrome to treat and often difficult to regain the lost speech, especially if the child is very young at the onset of LKS. The “not knowing” if she would ever talk again, or how she would function, was overwhelming and scary. She was regressing in all areas, not just her language skills. She wasn’t walking or running like a child her age, and she was withdrawn and appeared autistic at times as well.
Soon after her diagnosis, we were referred to a New Mexico State organization called Step-hi to see about learning sign language. I thought: “Sign language? Why would we need that? Certainly my daughter will speak again.” But as the weeks went on, and I continued to research, the more I began to realize that we just might need an alternative means of communication. In the beginning, I never realized how true that would become not only for my daughter, but for our family. It has now been two and a half years since my daughter has been able to speak verbally. I cannot even imagine where we would be right now if we had not gone begun to learn sign language.
My daughter attends the New Mexico School for the Deaf Preschool in Albuquerque where she has friends she can communicate with, and has found a community where she fits in. She is an eager learner and is becoming very aware of words and letters and is being prepared for Kindergarten this year. She continues with occupational and speech therapies. It is still unclear if she will ever speak again. We continue our struggle with getting her seizures under control and gaining the clear EEG we desire.
My daughter being welcomed at the New Mexico School for the Deaf preschool in Albuquerque gave my family a new community to connect with. I am now the Co-Director for the New Mexico chapter of Hands & Voices, where I remain passionate about communication access for deaf and hard of hearing children. My daughter attends school daily where she plays, learns, smiles, laughs, is thriving and has friends.