CARE COORDINATION AND PERSONAL CARE
There are known factors about being a parent. Parents respond naturally to their infant’s cries and work to provide nourishment, clean diapers, clothes, and shelter. As children age, they are brought to the pediatrician or family practitioner where immunizations and well child checks are available. Parents enroll their children in a school and maintain contact with the school professionals.
There are many additional factors for parents of children with multiple medical and developmental complications. For children and adults with CdLS, additional preventative visits should include an eye doctor, an audiologist, a pediatric dentist, and early intervention therapists in addition to the primary care doctor. Other specialists may be needed, including cardiology, gastroenterology, urology, neurology, genetics, child psychiatry, and behavioral psychology. Acute care may require visits to Emergency Rooms or Urgent Care.
One significant benefit of your child’s insurance (e.g., Medicaid/Medicare/private insurance) or primary care office will likely be a Case Manager (a care coordinator) who can help you navigate the health care system. You may have to ask specifically for this benefit, but it should be provided.
Often this care coordinator can help with making/attending appointments and with things like hard-to-find formulas or expensive medications. Each state has a Developmental Disabilities Services office (they all have different names) that helps coordinate targeted case management and provides community (social) services. There may also be a similar coordinator in the school system. Below are some websites that may be useful.
Throughout all the care needed for your child/adult with CdLS, caregivers have to focus on their own mental health. This involves having a supportive partner in parenting and taking some personal time for errands, appointments, meals, and sleep. Hopefully, this time also involves exercise, pampering, reading, watching tv, gaming, and puttering around – whatever increases happiness and satisfaction. In addition to taking responsibility for others, please take care of yourself!
