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Parenting Special Needs Children
Top 5 Qualities of Successful Special Parents
By Teri Brown
Organization is essential when managing the ever-present details of living with special children. Greene says the more severe the issue, the more critical it is to be organized. A parent simply cannot risk running out of insulin or not having the epi-pen readily available. "Management of medications, medical treatments and doctor's visits can become a delicate balancing act," she says. "For example, our two children with cystic fibrosis take 14 different medications each day between them, and three are inhaled along with doing chest physical therapy. Some can't be taken within a certain time frame of others, so we really have to be organized to manage it all. That's not to mention managing the stock of our meds with the pharmacy, the multiple quarterly doctors' visits – or more when they are sick – and scheduling hospital stays when IV antibiotics or sinus surgery is needed and managing the insurance/finances of all of this."
On top of that, normal life such as schoolwork, social activities, groceries and laundry need to be managed as well. So being organized is a key to saving time, making sure things run as smoothly as possible, avoiding nasty surprises and cutting down on frustration. Greene says it also helps parents to feel like things are in control. "When the engine of the car is purring along nicely, we are more able to handle the extra challenges that inevitably come up," she says.
Julie Turkoske is an information and referral specialist for children and youth with the Special Needs Family Center at Children's Hospital of Wisconsin. She believes it helps to have medical information documented in an organized way. Each school year, parents must provide basic vaccination records, as well as allergies, reactions and other information specific to a diagnosis. When visiting new physicians or specialists, when applying for community-based services, when transitioning to adult services and at other times, families will be asked for specific dates of surgeries/procedures, medications, inpatient stays and other interventions.