In September 2012, Holden's team of pediatric neurologists diagnosed him with a rare form of epilepsy called Landau-Kleffner Syndrome, or LKS, also known as "acquired epileptic aphasia." LKS impairs his ability to understand spoken language and express himself with verbal fluency; in fact, he regresses from the disorder's onset, which we believe began in 2010 when he was four years old.
Holden experiences the world as if everyone else speaks foreign language and occasionally throws in a word or phrase in English. Like most people who experience aphasia, he often cannot find the right word to express his thoughts, feelings, and needs. Because the seizure activity occurs during sleep, Holden's ability to convert short-term to long-term memory is disrupted. Like other children with LKS, his hearing and intelligence are normal, but his challenges with language and difficulty sleeping result in decreased attention and occasional episodes of depression.
Holden's prognosis is uncertain. Although the seizures usually resolve during puberty, residual language problems often remain. Holden, his father, and I are learning American Sign Language to increase the possibilities of effective communication for his lifetime.
How a Service Dog Can Help
Pawsitivity in St. Paul, Minnesota has paired Holden with Haven, a three-year-old Golden Retriever. Haven's trainers have taught her effective methods to help children with behaviors similar to Holden's. Specifically, Haven can help keep Holden from wandering off in public places or even outside of his own home. She can also provide direct sensory input"”learning by touch"”by sitting near or leaning on Holden, which can help mitigate his emotional meltdowns and overall stress. Haven can also provide social therapy for Holden; Holden is not the outgoing kid of his preschool days. LKS has made him more fearful of interactions with peers. As a "social bridge," Haven can invite other kids to play and interact. Many kids, and grown-ups, do not quite understand why Holden looks "normal" and moves "normal" and "seems normal" but cannot hold a conversation. Haven will be a signal to others that "things are not what they seem."
One of my goals as Holden's mother is to keep him engaged with the world and not mired in frustration, discouragement, and disappointment.
Haven will be a stellar companion: another set of eyes on Holden when I am making dinner, a secure friend when Holden is having trouble sleeping, an ice-breaker when meeting new friends, someone (besides me) to snuggle with when sad or frustrated, and a good "listener" to books. (Holden is struggling to learn to read but has many books memorized and likes to try to tell his version of the story.) Plus, as a Certified Service Dog, Haven can accompany us to our many blood draws, hospital stays, and outings.
How You Can Help
To purchase Haven, we must raise $16,500. You can help us achieve our goal by donating any amount you wish.
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