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New Jersey Alliance of Family Support Organizations

NJ Family Support Blog

By Pamela Wilson

It is often difficult to find a good local pediatrician or clinic for a child with a disability, chronic health condition, or other special needs.

Parents of newly diagnosed babies may be asking about the implications of their child's specific diagnosis from a doctor who heard only a few minutes mention of it during medical school and has had less actual experience with patients.

Even the strongest advocate-parent may not realize the importance of finding credible resources to share with their doctor so that a well trained physician can become an actual expert on the topic. For parents whose children have a condition or health problem that is new to the family, it may be helpful to seek out an adult with the same diagnosis to learn more about their children's healthcare needs.

Knowing what health care procedures to avoid as well as what to seek can sometimes make all the difference. Another serious consideration is how comfortably staff and doctors relate to the child during medical visits, exams and discussions.

When we take our children in to their medical appointments, we are teaching them how to be lifelong advocates for themselves. Staff who do not treat babies and children with respect, consideration and kindness teach them to expect very little from alternate caregivers.

Like other adults who will meet and get to know your children, medical professionals can take cues from a parent. It's often helpful if you take the time to explain what is going on, apologize or use gentle humor to ease or distract them from the stressful part of the examination, and include them when you are talking with their doctor.

Only one in ten doctors graduate in the top ten percent of their class. It could be that it is easier and of greater benefit to your child to establish a relationship with a good doctor and provide them with up to date information about your child's condition than to trust in a medical professional who seems to have the reputation of having 'many patients' with your child's condition.

A doctor who knows your child as an individual is much more likely to attribute uncharacteristic behaviors or other symptoms to an additional developing medical condition. Families of children who do have or will develop a dual diagnosis need medical professionals who will listen to their concerns and observations. That in itself can save a child's life.

Following all the recommendations that healthcare advocates advise for mainstream patients works well for children with disabilities. Any 'red flag' that they mention can be doubly important to notice in medical staff for a child with special needs.

It's well worth the trouble to find a great doctor or clinic so that our children get adequate care from the start and medical staff can build a relationship with each child that will lead to greater health benefits as they grow up.


Alliance Partners & Sponsors

NJ Department of Children & Families National Federation of Families for Children's Mental Health Statewide Parent Advocacy Network of NJ Substance Abuse and Mental Health Services Association National Technical Assistance Center for Children's Mental Health Village Wrap Lighthouse Youth Move National