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Ask any parent and you'll get agreement: Raising children today is no easy task. Then again, the defense of a nation isn't especially simple, either. In order to thrive, our society needs dedicated people willing to devote themselves to these difficult tasks 24 hours a day, seven days a week. Across the country, millions of families are taking on both of these vital responsibilities. And some are also coping with a child with a neuromuscular disease.

Being a parent means holding the future of our civilization in the palm of your hands. Being the parent of a child with a neuromuscular disease means an already difficult task becomes exponentially more complicated.

And our armed forces defend so much more than just the land within our nation's borders. Our soldiers, sailors, airmen and Marines are also charged with defending the ideals of freedom and democracy throughout the world.

These days, however, Kristie Manchester's thoughts are a long way from these philosophical concerns. She's far too busy trying to convince her three children that bedtime actually means going to sleep and, yes, she really does mean right now.

'Business Trips'

It's not especially unusual to see one parent taking care of the kids alone while the other is out of town on business, but it's a little different for a military family.

Kristie Manchester's husband, Staff Sgt. Michael Manchester of the U.S. Air Force, has already been gone for almost three months, working in a command post to help monitor the peace in Bosnia. This leaves Kristie at the family home near Luke Air Force Base in Phoenix with 10-year-old Michael, who has attention deficit hyperactivity disorder (ADHD), and Kassie, 8, who has spinal muscular atrophy (SMA). And her daughter Sydney? "She's 6," Manchester explains - enough said.

"I told Michael that next time I was going to go to Bosnia," she says, only half in jest. "It's hard. Kassie just had hip and knee surgery, a few weeks after Michael left for Bosnia. She needed constant care, changing the dressings and so forth.

"Sometimes I get frustrated with it all, and the kids pick up on it," she admits.

The Military Lifestyle

U.S. Marine Master Sgt. Ken Carter and daughter Lauren.

Traci Carter knows a thing or two about both raising children and military life. A former member of the U.S. Army, Traci is the wife of U.S. Marine Corps Master Sgt. Ken Carter and the mother of two children - 5-year-old Dalton and MDA National Goodwill Ambassador Lauren, 9.

Lauren was not quite 2 years old when she was found to have SMA. When Traci was informed of her daughter's condition, her husband was entering the last two months of an assignment in Japan.

"As a communications chief, my husband is serviceable anywhere," Carter says. "As a result, we move about every two years on average. Sometimes we get a month's advance notice, sometimes not even that. It becomes just a part of life. It's hard, because you have so much extra to do."

When it comes to neuromuscular diseases, nothing is simple - not even the initial diagnosis.

"My daughter, Chanel, spent six weeks at Walter Reed Hospital just to get an accurate diagnosis," says Andrea Washington, wife of U.S. Army Staff Sgt. Roy Washington. Chanel, 7, also has SMA. Other families report similar experiences. In fact, most people find they have to go to an MDA clinic for an accurate diagnosis.

U.S. Army Staff Sgt. Roy Washington, with daughter Chanel and wife Andrea.

"Sometimes, when Chanel gets sick with something simple like a cold, I find myself having to explain spinal muscular atrophy to different doctors and nurses," her mother says. "I don't usually mind, but sometimes it gets frustrating. I feel like saying, 'Look, I know what my daughter needs. Can't you just give it to me and let me be on my way?'"

In addition to the changes in the home and the daily routine of the entire family - not to mention the seemingly endless list of appointments with doctors and physical therapists - the frequent moves in the military life affect special arrangements for the child's education.

"You have to develop an Individual Education Plan (IEP) for your child," Washington advises. "And you have to be prepared to stick with it - no matter what happens."

Exceptional Family Member Program

There's help available to military families trying to cope with the special needs of family members with neuromuscular diseases.

First introduced in 1978, the Exceptional Family Member Program covers all branches of the U.S. armed services. Its primary purpose is to ensure that service members are stationed in areas where their families' special needs can be met. "Special needs" covers a lot of ground - ranging from physical disabilities and medical conditions to psychological disorders and special educational needs.

Washington reports that the Exceptional Family Member Program helped her husband gain his current assignment to Fort Knox, Ky., a good location for Chanel's medical needs. She says the Fort Knox EFMP office has been an invaluable resource during the past two years since the family arrived.

"They're awesome," she says simply. "They provide terrific support, including a monthly newsletter, different social activities like bowling and swimming, and they get different speakers to come and talk about all of the various conditions that we're all trying to deal with. Basically it's a support group to keep us from getting lost."

Traci Carter agrees. "When Ken was stationed in 29 Palms [a rural station in the California desert], it used to seem like I spent most of my life just driving Lauren from one appointment to another."

Soon after enrolling in the EFMP, the Carters were transferred to an area much closer to the facilities Lauren needs. Today, the family is stationed at Camp Pendleton near San Diego.

Making the Program Work

Each military base has a staff person, either civilian or military, responsible for administering the EFMP program. Staff Sgt. Eric York is the EFMP administrator at Davis-Monthan Air Force Base in Tucson, Ariz. York sees his responsibility as serving both inbound and outbound EFMP members.

Kristie Manchester with children Michael, Kassie, and Sydney.

"I conduct an orientation for incoming EFMP families," he explains. "We try to help families with special needs get themselves set up once they arrive, and we try to let them know what services are available - both here on base and out in the community."

The Air Force EFMP can also get parents a much-needed break through its Respite Care program. This allows parents to bring their special needs children to the youth center for 12 hours per week, and for five hours on one or two Saturdays each month.

"Sometimes you need that, just to keep your sanity," says Kristie Manchester. Manchester has her own respite plan. "Michael says he's going to take the kids camping when he gets back from Bosnia. I told him that he and the kids should have a wonderful time - and I'll look forward to hearing all about it when they get back!" she says with a laugh. Michael Manchester was scheduled to return from Bosnia in September.

Later, when the military member receives orders for a permanent change of station, the EFMP office initiates a facility determination inquiry to ensure that the new base has the medical and educational services to meet the member's special needs.

"It's a great program," Staff Sgt. York says. "We have a lot of connecions and can really help get the ball rolling for families."

Education Is the Key

"The big thing is education, letting people know we're here," says Staff Sgt. York.

"People don't realize that we can help them with a wide variety of needs, even with less disabling conditions like asthma.

"Also, a lot of people have the misconception that the program harms your career, but it absolutely does not. It just helps you take care of your family."

"I've heard of families who tried to avoid enrolling in the program," Traci Carter echoes. "But I don't understand that. In our case, it also helped us get priority housing. And it hasn't hurt Ken's career in any way. In fact, the EFMP information is not allowed to be attached to your service records, so promotion boards don't even see it."

Andrea Washington talks about her family's arrival at Fort Knox, and the difficulty in making arrangements for everything from the family home to Chanel's school to establishing new relationships with the various health professionals Chanel needs. All of this was in addition to learning the ins and outs of a new base and a new community.

"The EFMP office was fabulous," she says. "They helped me in so many ways. It's hard to know what's available in a new community."

Charlotte Peterson, the EFMP administrator at Fort Knox, agrees. "The Army tries their best to let people know about the program, but a lot of people don't pay attention because they think it doesn't apply to them. That's a big part of what I'm there for. I try to point families in the right direction, let them know what's available to them, and they choose."

An Experienced Guide

"She really knows what's going on," Andrea Washington says of Peterson. "And she'll fight to help families get what they need. If you really want to understand what EFMP is all about, you've got to talk to her."

EFMP's effectiveness varies from base to base, Peterson acknowledges. "It depends on the base. Some bases put a lot of emphasis on it, and some have other priorities." But it offers a great deal more than anything she's seen in the civilian world, she says.

That's why, in working with families like the Washingtons, Peterson has developed a great respect for the services MDA provides its client families.

She proudly adds that "Fort Knox has the military's only service dog training program, to benefit both EFMP families and veterans with service-connected disabilities." (For information on the AIM HI program [Animals in the Military Helping Individuals], call (502) 624-8986 or visit wwwiach.knox.amedd.army.mil/vets/brochure.htm.)

Peterson and other EFMP administrators can also refer families to state and federal programs that assist children with special health needs.

EFMP Benefits the Armed Forces

With the armed forces' legendary single-minded focus on "the mission," it's tempting to ask why they're willing to devote time and resources to a program that helps enlistees' families.

"It simply doesn't make sense to send a soldier to an area where his family's special needs can't be met," Peterson explains.

"You've already spent a lot of money moving the family there, and then you have to deal with a request for a compassionate reassignment. Now you have a unit that's shorthanded until the Army can find another qualified soldier to fill that position, and so forth.

"By identifying the special services that a family needs before they're reassigned, EFMP has more than paid for itself in terms of cost savings to the military," she adds.

But the most direct benefit that the military realizes from EFMP is on a much more basic level, Peterson says.

"If you've got families that feel like they're being taken care of, then you've got a soldier who can concentrate properly on the mission."