More and more parents are realizing that homeschooling is a great option for children with physical or mental challenges. The one-on-one attention provided by a loving, caring parent helps special needs kids thrive in a homeschool environment.
Such is the case with James Laberee of Medford, New Jersey. He was born with a life-threatening seizure disorder and was not expected to survive his first year. Overcoming the odds, James is now 18 years old. Despite his early setback, the teen is a world traveler and is mastering several languages.
James has three older siblings. His parents, Peter and Rosemary, homeschooled their kids after mom “decided to apply my managerial skills to raising and teaching them myself.”
When Baby James was born, he experienced up to 100 seizures per day and had to spend several weeks in the NICU. He was diagnosed with Malignant Migrating Partial Seizure Disorder of Infancy (MMPSI), a severe form of epilepsy that does not respond well to treatment. Here is a description of MMPSI from Epilepsy Action:
The outlook is usually very poor. This is because the seizures never come under control for more than a few days or a week at a time and sometimes they are never controlled. Sadly, many children with this syndrome die in childhood due to the complications of the disorder, including repeated chest infections. Infants and children will be dependent for all their care and will have problems with feeding. Most children will need to have a gastrostomy feeding (PEG) tube inserted to ensure they can receive all the fluids and nutrition they need. Those who do survive will usually have severe neurological and developmental problems, even if the seizures are partly controlled.
“We were very scared,” Rosemary told The Epoch Times. “Scared for him. Scared for our future. Scared for the pain and loss this represented for our whole family.”
The heartbroken couple’s most challenging task was explaining the baby’s condition to his three siblings who were age 9, 7, and 4 at the time.
“[W]e told them that God might want to have James back, that we might not get to keep him,” Rosemary wrote in a Quora post titled, “What’s the hardest thing you have ever had to tell your children?”
“It broke my heart to give my kids such sad news about our newborn baby,” Rosemary shared. “Our three children were quiet. Then they cried. But rather soon after (that same day!) they wanted to know when ‘our baby’ could come home, so they could help care for him. They wanted to ‘cure him.’ Their sweet naiveté and their desire to fix him….well, that broke my heart a little more.”
The thing is, they made good on this determination and hope to fix the baby. When he did come home, “they believed they would heal him with their love,” said Rosemary. “Maybe they did.”
“[T]hey held him constantly. Sang to him. Read to him. Played music for him. Fussed over him. Called 911 when he wasn’t breathing after a particularly long seizure, or watched over him when I called 911. We have home educated our kids, so they were together almost all of the time in the year that followed,” Rosemary explained in her Quora post.
“We had strong faith. We had each other. We prayed,” Rosemary told The Epoch Times. “I wasn’t sure how we’d cope if James died, but I knew the best path forward was to make our days as normal as possible.” James accompanied his family for hiking, birthday parties, playdates, outings, and church activities, albeit heavily sedated.
Then they began to notice a change: James was having fewer and fewer seizures. Encouraged by what she witnessed, Rosemary sent videos of James to the neurologist where he was alert for long stretches of time and had not seized once.
His neurological team admitted him for a four-day observation, drawing an incredible conclusion after just 24 hours: For the first time in James’s life, his EEG activity was normal. “They were delighted and flabbergasted,” Rosemary said.
James Laberee was gradually weaned off his medication over the course of a year. By 18 months of age, his seizures slowed to almost none. He started to sit up, move, and crawl. By age 2.5 he was walking with some support. He learned to read soon after learning to walk. By age 3 he was running.
Rosemary wrote, “Once James began to walk and was weaned off of all the meds he was on, he developed normally, to the complete astonishment of his neurology team. That said, because he missed a key window of development (birth to age 2) his motor skills – fine and gross – were affected. He moved very little during this time. He was often cognitively alert and entertained by what went on around him, but the meds suppressed a lot of movement.”
James Laberee’s official records in the hospital, and his diagnosis, were changed when he was 10 years old. However, James never did quite catch up to his peers when it came to gross and fine motor skills. “Despite a decade of physical and occupational therapy, it was clear to us and to him that he’d never be an athlete in a sport that requires coordination, catching, throwing, dodging, quick pivots, etc. His words: “Big deal.”
Rosemary said, “I will never forget the day his oldest brother finally succeeded in teaching him how to ride a bike. Took forever. But, he persisted.”
In high school, James Laberee gained strength and confidence through his participation in the South Jersey Rowing Club. He acquired leadership skills and played the role of a CIA agent in the Junior State of America, a student-run organization that sets up a mock government of sorts.
Now James is a healthy, thriving young man who can “run like the wind.” He loves lifting weights, running, rowing, swimming and fishing. He also loves reading and gaming. “He is very funny,” said his mom; “he makes us laugh out loud every day.”
James Laberee also has a remarkable aptitude for languages. “He is very bright, with a gift for learning new languages,” Rosemary said. He learned Latin at an early age. “He is completely fluent in Macedonian and can get by in Bulgarian and Russian, too,” Rosemary told The Epoch Times. “Now, he is becoming fluent in German.”
James’s language skills won him a scholarship to the Balkans, where he lived for seven months. In August 2021, James will depart for a year in Germany.
“I feel like the luckiest mother in the world,” Rosemary reflected. “Every day, I am grateful beyond measure.”