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Does Your Child Have Special Health Care Needs?
Information from the Massachusetts Family-to-Family Health Information Center
Massachusetts Family-to-Family Health Information Center

Special health needs may be physical, developmental, behavioral or emotional, and may first become evident in a child of any age. With or without a specific diagnosis, children with special health needs often require health and other related services beyond those needed by other children, due to the complexity and chronic nature of their conditions.

Pre-natal testing can identify some genetic conditions and birth defects before your baby is born. Other conditions are diagnosed at birth, or with additional testing, soon after the baby is born. Sometimes children develop special health needs due to illness, injury or accident. However, many families have nothing more than a “gut feeling” that something is not quite right with their child. Their child’s development and behaviors, like puzzle parts, are pieced together over time before the whole picture emerges and special health needs are determined. As a parent, you know your child best; follow your instincts. If you think your child has special health needs, speak with your pediatrician. This primary health provider is your partner in caring for your child’s health and well-being. It is important to share your concerns and get the doctor’s input. It may take several visits to sort out your child’s symptoms. When you make appointments, ask for extra time for a thorough discussion with the doctor. Write down your questions and concerns before each appointment.

Does your child have special health needs? Consider the following:

  • Are you concerned about your child’s eating, weight gain or loss, and sleeping patterns?

  • How does your baby respond to light, touch and sound?

  • Does your young child learn new skills (walking, talking, playing) about the same time as other children his age?

  • Has your child stopped learning new skills or lost skills she had?

  • Does your child need treatment for on-going health issues that are unique for a child his age (for example chronic ear infections, asthma, joint pain, or frequent stomachaches)?

  • Has there been a distinct change in your teen’s eating and sleeping patterns, hygiene, general attitudes and emotional health?

This is not an exhaustive list. These questions are only a starting point for further discussion with your child’s doctor. You and the doctor will work together to “solve” the puzzle and develop a course of treatment, which may include referrals to doctors that specialize in a particular area of medicine. For example, a cardiologist will provide consultation about suspected heart defects; for problems with the stomach, colon and intestines, your child may need a gastroenterologist.

If your child does have special health care needs, it will be important to keep records about your child’s health condition and medical services. The American Academy of Pediatrics has created a Build Your Own Care Notebook section on its National Center for Medical Home Implementation Web site at www.medicalhomeinfo.org/tools/care_notebook.html. You can pick and choose from a variety of forms, many in English and Spanish, that were designed to help families organize information, keep track of doctors, health plans, medications, school and health services, and other supports your child and family might need. Even if a care notebook is not how you organize and track information about your child, the materials may provide helpful ideas about the types of information to include in an organizational tool that better fits your style.

What does it mean to have a child with special health needs? You are still the parent of a wonderful and unique child, but your parenting experience may include more than teaching your child to share, play ball, and handle the disappointment of not making a sports team. You may also have to help your child cope with medical tests, hospitalizations, unique feeding routines, and other demands that are different from most families’ parenting experiences. You are not alone. Your medical team will explain treatment options and help you make decisions. In addition, other families may provide an important source of support and can help you find useful information and resources. For this type of support and information, connect with Family TIES of Massachusetts. Learn more by calling 1-800-905-TIES, or visit www.massfamilyties.org.

For information about working in partnership with your health providers, and information about healthcare financing, call the Massachusetts Family-to-Family Health Information Center at 1-800-331-0688, ext. 210, e-mail massfv@fcsn.org or visit www.massfamlyvoices.org.