In 2003, Phillip Mayer, Angela Mayer's nine-month-old son and the youngest of her four children, abruptly lost his wobbly ability to stand. A Queens, New York resident, Angela watched with growing dread as Phillip ceased most of his gross motor activities, like crawling or flipping from side to side. A neurologist's test confirmed that Phillip suffered from Spinal Muscular Atrophy Type II, or SMA. Even though his Type II form wasn't as severe as Type I, the doctor declared, in somber tones, that Phillip might not live to see his second birthday and that there was nothing that could be done for him.
Angela's maternal instinct kicked into overdrive. "I needed to help him," she recalls now. She worked closely with the boy's physical therapist, participating in weekly sessions. She and her husband purchased a device that allowed Phillip the sensation of standing, bearing weight on his curled feet, even as he was strapped into a wooden frame. At age three, they tried a drug trial at Stanford University. Despite the grave diagnosis, the family fumbled for scraps of promising news. And while there have been setbacks, unlike most SMA children, Phillip never developed major respiratory issues, and only requires support from a BiPAP machine at night as he sleeps.
Six years later, what are the lessons Mayer has absorbed? "Don't be afraid to ask questions, repeatedly," she says today, "especially to the experts who, frankly, don't always know everything. Learn how to pick their brains." And above all else, when that scary diagnosis lands in your life like an anvil, "learn to advocate for your child immediately."
Assuming you have just received a special needs diagnosis yourself, the central pillar in being the best advocate for your child is a detailed, comprehensive plan. At the Center for Disease Control in Atlanta, Georgina Peacock, MD, MPH, a developmental pediatrician, agrees emphatically (See the CDC's Act Early information). Although a diagnosis can cover a staggeringly diverse range of treatment options - a child with, say, a cardiac problem requires different interventions from a neurological case like Phillip - there are a few key guidelines to keep in mind, no matter the condition. We worked with the CDC to develop this approach that will help you feel more control in a whirlwind of emotion.
Seek out a Second (or Even a Third or Fourth) Opinion
An out-of-the-blue diagnosis can leave families like Phillip's reeling from the shock, frightened of asking the inappropriate questions, or not asking enough. It's important to seek out various expertise, both from specialists in the condition as well as online communities of families "going through similar explorations." In this regard, Dr. Peacock feels that the Internet is an invaluable resource, (Search the Care.com Special Needs Groups) allowing patients and their caregivers to learn about leading clinical teams from both formal and casual online communities. Often these communities can steer a newly diagnosed family to the leading clinical teams. "Find a medical team that knows their stuff," Dr. Peacock advises, "the ones that specialize in the treatment of the problem."
Create a List of Questions
A list of germane questions can play a pivotal role during that first uneasy period, and they should encompass the gamut of concerns that can pinball crazily through a parent's mind. How much do procedures cost? Will my private insurance cover them? Does the risk outweigh the possible benefits? How do I help my child through her own process? What will all out lives be like in the coming weeks and months? Don't hesitate to skip from topic to topic. "It really helps to break things down into smaller chunks," Dr. Peacock says. "It makes it all feel more manageable."
Take Notes at Every Appointment
On visits with your child's new medical team, Dr. Peacock says, it's vital to take that pen and notepad, "write down things you hear" or even record the conversation so you can go back and listen, when your head isn't spinning so much. And it's also a wise idea to take someone with you - "a trusted friend, a family member, to listen as well and to take notes." In her experience, this "doubling" of eyes and ears can yield better information and thus better decisions in the long run.
Not that you weren't already attuned to your child, but now it's time to take notes at home on all- physical, emotional, even spiritual aspects of your child's development and happiness. As Dr. Peacock says, "Always remember a child is a child first, and a diagnosis second" - it's easy to lose sight of this fact amid a flurry of doctor appointments, strange new medications, and Greek and Latin terms. She constantly encourages parents to remain attentive to what's going on inside as well as outside the child.
This one is critical, Dr. Peacock observes. Often families will tell her that they've come to rely on a single figure: a doctor, a nurse or nurse practitioner, or occasionally a social worker or clinic administrator. "Find that trusted person," she says, the one who'll return that late-night phone call promptly, who can handle a barrage of frightened, scattered e-mails. Caregivers must take care of themselves in order to take care of their children, especially those with myriad special needs. Parents should make time for "date night" away from the kids, relying on services such as Respite or Special Needs caregivers. "You must conserve energy," says Dr. Peacock. National networks, such as Family Voices, also offer a spectrum of services tailored to individual families.
Continue Being a Family
Dr. Peacock stresses the vital importance of families remaining essentially what they were before their child's diagnosis, to perceive themselves not as a "special-needs family" but "a family with a child with special needs," with rich and textured relationships like other families on the block. One terrific tool is to create a resume of sorts, one that details the child's personality - favorite foods, musical preferences, games she likes to play with her siblings - as well as an overview of the medical history that professionals can refer to without losing sight of the child as a person. It's also important to continue nurturing your relationships with other children, maintaining one-on-one time with each child, even if it means hiring a babysitter or restructuring your day to find quality solo time.
The father of a ten-year-old boy with a neuromuscular disorder, Hamilton Cain has written for the New York Times, Men's Health, O Magazine and various online venues. He is also the author of a memoir, "This Boy's Faith". He lives with his family in Brooklyn, New York.