If you have recently learned that your child has a developmental delay or a disability (which may or may not be completely defined), this message may be for you. It is written from the personal perspective of a parent who has shared this experience and all that goes with it.
When parents learn about any difficulty or problem in their child’s development, this information comes as a tremendous blow. The day my child was diagnosed as having a disability, I was devastated—and so confused that I recall little else about those first days other than the heartbreak. Another parent described this event as a “black sack” being pulled down over her head, blocking her ability to hear, see, and think in normal ways. Another parent described the trauma as “having a knife stuck” in her heart. Perhaps these descriptions seem a bit dramatic, yet it has been my experience that they may not sufficiently describe the many emotions that flood parents’ minds and hearts when they receive any bad news about their child.
Did you know that more than one in five families has at least one child with special health care needs (SHCN) – 23% of families? Families of children/youth with SHCN typically experience greater stress, struggling to meet the needs of their child in a maze of multiple and complex systems of care. Many families find that insurance is not adequate, care coordination is ineffective, and referrals are difficult.
Across the country families of SHCN get help from health care financing programs, community supports, and family-centered health care practices. Please help others learn more about the needs of children/youth with SHCN and how to help these families.