When you first learned your child had Down syndrome, you probably had a whirlwind of questions swirling through your mind. The doctor who delivered the news may have been sensitive and thorough in addressing your concerns, giving you confidence about the road ahead. Or, the doctor may have been brusque, launching you into the journey to special parenthood feeling isolated and unprepared.
For many parents, that early experience evolves into a powerful memory and influences their attitude toward future encounters with physicians. Ultimately, the experience highlights the influential role a doctor can play — for better or worse — and the importance of striving for the best possible relationship with your child’s healthcare providers.
Let’s face it, doctors are likely be a prominent part of your life if you have a child with Down syndrome. The condition comes with many potential medical complications, the need for special screenings for health maintenance, and the complicated task of coordinating care offered by specialists, therapists, home health aides, and others. Throughout your journey, your child’s pediatrician can be a valuable resource for support.
Ideally, the relationship between parent and physician is a partnership, with each member bringing their individual goals, responsibilities, and expectations to it. The partnership is more likely to be productive when communication flows smoothly and conflicts are resolved quickly and respectfully.
When considering your child’s healthcare, what are your goals as a parent? Of course, you want to do what’s best for your child. That includes helping your child remain as healthy as possible, quickly addressing any medical complications that may arise, and maximizing your child’s potential to develop, grow and learn.
You also want to feel confident in your parenting ability. This includes feeling comfortable recognizing problems, making responsible medical decisions, and controlling excess worry.
You also want to strike a balance between meeting your child’s special medical and developmental needs and integrating him into your family, fostering peer relationships, and engaging in recreational activities.
Your child’s doctor also wants to assure the best interests of your child, in many of the same ways you do.
The doctor wants to maintain your child’s best possible health status, prevent future problems, and maximize developmental potential. He or she wants to provide accurate and complete information to guarantee you understand your child’s issues, and to offer guidance in making necessary decisions.
Your child’s doctor also wants to provide comfort and support to you as parents, so you don’t feel alone when addressing your child’s challenges – whether they are large or small.
As in any relationship that requires teamwork, the parent-physician partnership can be strained when expectations fail to be met. Parents want doctors to be knowledgeable, sensitive, good listeners, and willing to spend time with patients and families. Doctors should respect the opinions of parents and encourage them to participate in decision-making about their child’s future. A positive relationship can be built between parent and physician over time if the family sees the same physician consistently.
In the past, the dynamic between doctor and parent was mostly one-sided. The doctor advised, the parent complied. There was no discussion, no feedback, and no adjustments.
Today, the relationship between parent and physician is evolving. Through self-education, information from advocacy organizations and internet resources, parents have become empowered to play a more active role in their child’s health.
While doctors may continue to initiate the communication process, parents can help build positive relationships with physicians. The following tips can help you be an active partner in your child’s care, ensure you make the most of your time with them, and help you maintain a positive parent-physician relationship that will mean the best care for your child.
- Make the most of your time in the physician’s office. Most doctors allow a 15-minute time-slot for each appointment. This may not be enough time to comfortably address everything on your mind. Ask for extra time when you book the appointment. It’s usually an easy request to accommodate and is mutually beneficial, as it will allow the doctor to feel less rushed during your child’s visit.
- Keep information organized. If your child sees multiple specialists, you may find it helpful to keep a binder with sections for each individual. Having past records at your fingertips saves time when you’re trying to recall dates and details. Other advance preparations, such as a list of questions and bringing medications to the visit, can serve as prompts to assure that nothing is forgotten.
- Tell the truth. The doctor is there to help you and your child, not to judge you. If you didn’t pursue certain recommendations (didn’t give a medication, didn’t schedule a test or appointment), just say so. It will give you the chance to explain your difficulty with the doctor’s orders and will give the doctor a chance to explain its importance or negotiate a new plan.
- Be familiar with national guidelines. While parents are not expected to know all there is to know about Down syndrome, reviewing guidelines for health maintenance (such as those issued by the American Academy of Pediatrics) can provide a foundation for the dialogue that you can expect to have with your child’s pediatrician.
- Speak up. If you don’t understand something or disagree with the doctor’s advice or approach, it’s OK to say so. In the end, decisions about your child are in your hands. A questioning attitude will ultimately lead you to greater comfort with those decisions, and your child’s doctor understands this.
- Trust your doctor’s intentions. Your doctor dedicated his or her career to taking care of children. It should be safe to assume that he or she really cares about your child. If you suspect otherwise, perhaps this doctor is not the best match for your family and it may be time to choose another.
Building a brighter future — together
As a parent, there is no stronger advocate for your child than you. One of the most effective things you can do to protect your child’s health is to assemble a healthcare team that works together — with you as an integral member of that team.
Because you and your child’s pediatrician share many of the same goals for your child, together you can conquer the challenges and celebrate the triumphs you encounter on your way to a happy and healthy future for your child.