Exceptional family opens heart to take care of those with special needs
August 20, 2009
- 2009-The Year of the Noncommissioned Officer
- Exceptional Family Member Program
- Army Community Service
In life, there's the way you want it to be, and then there's the way it is.
Growing up with five other siblings, Staff Sgt. Kathy Seaton-Williams said she never wanted a large Family. But when she comes home from a day at work as the S1 NCOIC for the U.S. Army Garrison Headquarters command, she's met by four children, a husband and a six-month old border collie.
What makes her Family even more special is the exceptional nature of two of the children: her son, Earleo, 12, and niece, Shantell, 11. The other children are daughter, Lauren, 6, and son, Nicandro, 17 months.
Earleo suffers from autism while Shantell suffers from dual cortex syndrome, an abnormality in which a second cortex formed in her brain, said Earleo's father and Kathy's husband, Staff Sgt. Nicholas Williams, Installation Safety Office NCOIC, Fort McPherson.
This second formed cortex often misfires, Nicholas explained, causing Shantell to suffer from seizures. The misfires also cause damage to the parts of her brain that are responsible for memory and learning, Kathy said.
"It is hereditary. We believe it came from her mother," Nicholas said, adding that Shantell's mother, Kathy's sister, is epileptic.
Due to Shantell's mother's epilepsy, doctors in her home country of Barbados merely treated her with epilepsy medicine to no dramatic effect, Nicholas said. Thus, she came over to live with her aunt, where more care was available.
"The MRIs showed what was wrong," Nicholas said. Unfortunately, because the dual cortex matter was integrated with other parts of her brain, it could not be surgically removed, forcing the family to have to rely on different medications to control the impulses.
"The seizures are more spaced out," Nicholas said, since the medicine began to be administered. "Before, she had two or three a week. Now it is more like twice a month."
Because of the success of the treatment, the couple is attempting to adopt Shantell, despite having their own special needs child in Earleo.
"We have guardianship now, but we need permission to be able to adopt because she was born in another country," Kathy said.
It is a long process involving multiple agencies and courts, the Family said, a process they hope to be able to avoid now that Shantell's mother is also in the country.
"Our Family is definitely dynamic and different," Nicholas said.
With so many special needs that have to be met, Kathy and Nicholas give credit to the Army with helping them through various programs offered to those with special needs children.
"The Army has done so much for us. When we see some bills from the psychiatrist, you see that TRICARE has some really good services," Kathy said.
Besides TRICARE, the Army Community Services also offers care for those with special needs through the Exceptional Family Members Program.
Erma Warren, EFMP coordinator, said special needs include physical needs like handicaps, emotional needs such as mental illnesses, developmental needs like autism, and intellectual handicaps.
Currently, she said that 643 children are enrolled in the program at Fort McPherson and Fort Gillem, a large number for the size of the post.
Although the large numbers enrolled might seem to be a problem, the program provides benefits for the child as well as the parents, Warren said. She added that parents and sponsors should never fear for their military career, as having a dependant enrolled does not negatively affect promotion.
"It assists in assignments," Warren said of enrollment, which is mandatory. "We make sure Families are sent to areas where the best care is available; where we can be sure the child can get the care needed."
The program helped the Williams Family end up in Fort McPherson, where better care was available for their son.
Prior to their move, the couple was assigned to Germany, where care was not available.
"We really tried to make it work," Nicholas said, adding that they stayed for 18 months before relocating to Fort McPherson on a compassionate assignment.
Unlike Germany, the couple said the area has been able to provide excellent care for both Earleo and Shantell.
For Earleo, the May Institute, an institute providing comprehensive, research-validated services to children and adults with autism, and the Marcus Autism Center, a not-for-profit organization with a mission to provide information, services and programs to children with autism and related disorders, are both located in Atlanta and work with him and the Family, Kathy said.
Nicholas also said the school systems in Henry County where his children are enrolled, are highly ranked in terms of special education programs.
"They really work hard to teach kids," he said, adding that the schools have small classrooms and challenge the children to learn.
Both Kathy and Nicholas also said their respective commands are very supportive and understanding of their needs, allowing them the time needed to take care of Family emergencies.
Besides the positive effect that enrollment can have upon a sponsor's assignment, other benefits of the EFMP program include resources to help educate Family members and respite care, which provides temporary rest periods for Families with special needs, Warren said.
Through the respite care program, ACS subsidizes up to 40 hours of care per month per eligible Family member, Warren said. Because the Family's comfort and peace of mind is first and foremost, Families are free to choose their own respite care worker. This can range from professional respite care workers to Family members and friends.
"It gives temporary relief," Warren said.
For the Williams Family, the help comes from Kathy's mother, an avid gardener, who has been living with the couple for a year.
"Her mother has a green thumb, she can grow anything," Nicholas said, a skill that Kathy said applies to children as well as vegetables and fruits.
"My mom relocated to help us out. She's extra patient and understanding," Kathy said. "Without my mom's help I probably wouldn't be able to stay in the military."
The two incomes and the various military benefits that the Williamses enjoy are necessary to maintain their lifestyle, Nicholas said.
"It's an expensive lifestyle but we do manage," he said. "We always need a house that is big. A lot of space helps out a lot. If we had a small home we wouldn't be able to do it."
Their current home, a split level house, provides enough space and a chance to get a break from the struggles of raising two special needs children.
"Downstairs is grandma's house and the kids can have weekend-like vacations there," Nicholas said.
Just as the kids can find some escape by taking a walk down the stairs, Nicholas said Families with special needs children can find their own relief by finding out what military and non-military programs and services are available to them.
"Services are there", he said. "You just need to be willing to go out and get them. "Be diligent enough to keep checking back and keep going."
"Things don't always work out the way you want them to, but we love them all," Kathy added.