Camille and Martin: Seizure Disorder

Martin and Camille have four children.  Three of which have a seizure disorder. Camille and Martin were pioneers in getting appropriate services for their children.  Camille and Martin were candid about first learning about their children’s seizure disorder and are grateful for them in their lives. Having Multiple Children with a Disability Being born with no issues Camille explained that all three of her children were born presenting no issues.  Around five to seven months, is when they started having seizures. Camille said, “The oldest one was considered a genius.  She was able to put a puzzle together at the age of four months, and she was able to walk into the doctor's office three or four steps on her own by the age of seven months, and then she had her first seizure.” The medication that she was given to control the seizures was phenobarbital which Camille said will cause an intellectual disability. Her three children took phenobarbital and all developed an intellectual disability. No explanation for seizures “..they never found a specific reason for it or a name for it.  They all had the same issue, and then the learning disabilities on top of that were all slightly different.” Camille explained. With their first child, Camille said she had a really hard time dealing with the onset of a disability.  She said, “..she had been doing so well and was so bright and cheerful, and then suddenly began having so many problems.”   As her seizures increased, so did the doctors appointments.  Martin was working so Camille had to go to those alone. Something that Camille said “..it was quite difficult.”  As she was talking to the doctors, she said, “I started to think, ‘You know, this is what we’ve got to deal with, and we’ll just figure it out.  We’ll make it work.” She shifted the focus of trying to solve the issue to more of, “Okay, how can we make it better for her?” Hardest part was the best part Camille and Martin chose to have their children home with them instead of placing them in an institution.  This meant they needed to advocate for their children to get them the support and services they needed to be in a traditional school.  Camille said that they were met with pushback from the school districts. She said, “They would say, ‘Well, you’re the only parent that wants that.’  And we’d say, ‘Well, we have three kids like this, so we have three children that we want this for.’ and so by having the multiples, we had a little more push for them to consider it. “  Her advocacy for her children started to help with the organization of local programs in their city.   IDEA bill give access to services For Martin, he said that introduction of the IDEA bill made access to services easier for them.  IDEA or the Individuals with Disabilities Education Act is a federal law that ensures that people with disabilities get free appropriate access to a public education.   Even though this law was passed, Martin said that they were still met with resistance from the school district.  He said, “..we had to educate the local public school system as to what was best for our kids rather than what was convenient for them to present to us.”  The school would argue that they were the only parents pushing for services and other children didn’t need them. What they learned was that other parents needed and wanted services, but they weren’t aware that they could ask for them. “I think the districts were caught in the middle because they had a financial issue regards to these kinds of services and at the same time, they were obligated to take care of business by federal law.  That was a struggle too, that was difficult.” Martin said. The impact multiple children with disabilities have Camille and Martin both shared the impact having their children had not only in their life, but the life of their neurotypical daughter, and their community.