When a child doesn’t seem to be developing and learning in the way parents expect, it can be a confusing time. What are we doing wrong? Why is my child having temper tantrums over such little things? How can I help my child do better in school? Why isn’t she gaining weight? Why doesn’t he respond to his name? Am I a terrible parent?
These are just a few common questions and concerns parents have about the way their child is developing, learning and behaving, and some of the common self-doubt we may have when our children aren’t thriving.
Families want the best for their children, yet sometimes it can be hard to find what we need. At every stage of a child’s development, we often have more than one concern regarding the way the child is learning, behaving, sleeping, eating, moving and getting along with others. This is common for most parents, especially those who have a child with special needs.
What about for those parents who have an undiagnosed special-needs child? If the youngster has yet to be diagnosed, parents typically don’t know where to turn. They might know there is something wrong, but don’t know what steps to take to help their child, including what kind of expert should assess their child.
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The first step is seeing your pediatrician. Your child’s primary-care physician will be able to direct you to the correct specialist after examining your youngster and getting a medical history from you. Whether it’s an issue pertaining to a physical condition or behavioral health that is impacting your child’s development, your pediatrician can refer you to the correct specialist and will continue to oversee your child’s care when treated elsewhere.
If your child has just been diagnosed, be careful about jumping online and flooding yourself with information that can often be overwhelming and incorrect. Ask your child’s pediatrician or specialist for printed literature on the condition, and where you should go online for accurate information.
If you have been living with your child’s condition or disability for a while, you may need guidance about coping as your child enters a new stage of development, manages a new school transition or has a change in the way the condition presents itself. You could also have questions about what your family can do to help your other children adjust to their sibling’s medical condition and the impact on the family.
At this point, it might be wise to engage the services of a family navigator program, as can be found at the University of Miami Health System’ Mailman Center for Child Development. A family navigator program is designed to improve the lives of people with disabilities and their families. Patients are assigned a navigator who listens and learns about each family’s needs. Based on a family’s strengths and problem areas, they can connect you with additional resources and services.
At UHealth, each family navigator is a parent of a child with special healthcare needs, who has gone through his or her own medical journey. The navigator has experience dealing with the health and educational systems that support children with special needs, and can emotionally connect with the feelings and anxiety families often face.
When meeting with your physician or navigator, relax and open up, sharing all your concerns. You won’t be judged — and by being honest can better help the doctor identify an effective treatment plan.
If you are concerned about how your child is walking, talking, learning, behaving, or if you are wondering if you are getting the right services for your child, contact the Family Navigator Program at 305-243-5330, or visit pediatrics.med.miami.edu/mailman-center/family-navigator-program.
Helen Scarr is the executive director for patient advocacy and experience at the Mailman Center for Child Development at the University of Miami Health System. For more information, visit UHealthSystem.com/patients/pediatrics.
Common questions parents have
▪ Is this behavior at home or school appropriate?
▪ What should I do if my child isn’t getting along with other children?
▪ Why is my child sad, mad, anxious or easily frustrated?
▪ Why isn’t my child responding to their name?
▪ Is my child’s weight in a healthy range?
▪ Is my child eating the right food?
▪ How often should my child be watching TV or have screen time?
▪ Is my child getting enough physical activity?
▪ Is my child getting enough sleep?