Nadine Vogel, a mom from Short Hills, New Jersey, knows firsthand the challenges of raising a child with multiple special needs, as both of her daughters fall into this category.

When Vogel’s 10-year-old daughter was born, doctors didn’t expect her to live more than two days. She was born with an undiagnosed neuromuscular disorder that left her unable to swallow on her own. Vogel’s daughter, who is now 8 years old and attending a regular third grade class, also suffers from left side orthopedic issues and speech problems. Vogel’s second child was diagnosed at birth with Wolf Parkinson White syndrome, a condition that affects the heart and can potentially cause congestive heart failure. She also has an irregular heartbeat and a leaky heart valve.

Vogel turned her life experiences as a mother into a career when she founded MetLife’s Division of Estate Planning for Special Kids in 1998. She was determined to inform parents of the many important aspects of raising a child with special needs. She has devoted her life to this mission and has become an inspiration to many parents.

Ready to Rumble
It should come as no surprise that Vogel is committed to fighting for her daughters and all special needs kids. When she gets up in the morning, Vogel puts on the boxing gloves and asks, "Who am I going to have to fight today on behalf of my daughters?"

In order to find specialists, financial aid and educational resources, parents are forced to battle their way through many systems. Support is there, but parents have to learn how to find it and then fight for the best for their kids.

"The challenges are many," says Dr. Maricel Cigales, a board-certified behavior analyst and president of Advance Behavior Consulting in Miami, Fla., an agency that provides behavior analysis services. "This is true for a child with even one significant disability but is compounded exponentially when there are multiple disabilities or needs."

Vogel and her husband learned this the hard way. Having to struggle through the processes and various systems looking for help, Vogel became an expert on special needs rights. Now she fights for the rights of all special needs children and their families.

Educate Yourself
"Becoming educated as to their children’s rights under the law is a challenge for most parents," says Dr. Cigales. "Some parents, for example, are not aware of the Individuals with Disabilities Education Act (IDEA) – the federal law that states what schools must do for children with disabilities."

Dr. Cigales points out that no one will come knocking on your door with this kind of information – you have to educate yourself. While not always easy to find, there are programs offered federally and privately that provide medical and therapeutic services at no cost to the family. "Unless families are informed, they miss out on many opportunities," she says. "Then there’s the battle of getting the services rendered – the waiting lists can be long."

Dr. Cigales says the system is known to be under-funded, overwhelmed and in some cases even incompetent, making it even more imperative that parents become educated about all that is available. "Some programs provide home and/or community-based services," she says. "Through these programs, working parents can sometimes find service providers who can come to their home after work hours."

The problem that arises with these types of services is that they are generally in high demand. Often children end up going without a service provider because both parents need to work, and the demand for after-hours services means being placed on a long waiting list.

"A parent must learn enough about the child’s conditions to determine a scientifically sound treatment plan," says Susan Barton, an internationally-recognized expert in the fields of dyslexia and Attention Deficit Disorder (ADD) and founder of Bright Solutions an educational outreach firm. "This is not just about medication, but how to create the best environment at school and at home," she says.

Diagnosis of Multiple Special Needs
"It is extremely challenging to be a parent of a child with more than one disability because your child doesn’t easily fall into any one category," says Barton. "Children with ADHD, for example, often have more than one disability."

Attention Deficit Hyperactivity Disorder (ADHD) rarely travels alone. It is often accompanied by one or more co-morbid disorders, such as bipolar disorder, depression, obsessive-compulsive disorder and/or Tourette's. This makes it challenging for parents who are left to wonder why their child is not thriving. It’s fairly common for a physician to diagnose a child with ADHD and stop there, missing other special needs.

"Often it takes three to five years for someone to suggest the child might have another issue," says Barton. "Then they have to go through another round of professional testing and treating, renegotiate education programs and more."

Understandably, this can be very taxing for parents. "Many children need physical therapy, speech therapy and more in addition to applied behavior analysis," says Dr. Cigales. "Finding all of those providers, coordinating those services, scheduling and getting to appointments can be a strain. This usually works well if one parent is at home or works only part time."

Dr. Cigales has seen lots of mothers break down in tears because of the pressure. "It’s usually the moms who carry most of the weight in terms of getting their children adequate services."

Vogel stresses to parents that the impact on the family is huge. "You need to create and accept a new sense of ‘normal,'" she says. "There are new and greater demands placed on all members of the family and therefore increased stress, and this affects everyone."

The Final Reward
Witnessing their child successfully face many of the struggles that go along with their multiple special needs is a rewarding experience for many parents. "Strength for me comes from within, but it also comes from the positive reinforcement of seeing my child succeeding in so many ways due to my desire to fight the fights and be the advocate," says Vogel. "My children, in spite of their needs, will be successful, independent adults, in part because they are taught that they are like everyone else – they can do anything they dream of and never let anything stand in their way."

Want to see more?

• Welcome to Holland
• When Motherhood Takes on New Meaning: Parenting a Child With a Disability
• Beyond Surprise and Shock: Learning Your Baby Has Special Needs
• Talk about it!