Stronger Together: Support Resources in the Disabilities Community

Every parent reacts differently when a child is born with, or develops, a complex medical condition.  Common reactions and emotions might include disbelief, shock, confusion, denial or worry—and all of these emotions can change based upon the given day or situation. It’s important for parents to know that however you’re feeling, it’s OK.  Many parents find that feelings of distress often fade in time, giving way to acceptance, validation, relief and a sense of belonging.

Whatever your family’s circumstance, one thing’s for certain:  You and your child are not alone. Connecting with other families can offer comfort, hope and the chance to share your questions. Support networks can be invaluable forums to seek out answers and, if needed, obtain further understanding of your child’s condition.

• Family Voices of Minnesota is a nonprofit organization that puts parents and caregivers with similar needs in touch with one another. If you have questions about a surgery being recommended for your child—or if you’re looking to speak with a family whose child has similar needs—this could be an ideal resource for you.
• PACER  is a national nonprofit created by parents of children who have disabilities to help families facing similar challenges. The organization is located in Minnesota and offers a wealth of resources for parents and individuals of all ages who have complex conditions.
• Parent 2 Parent USA is a national group offering emotional and informational support for families of children who have special needs.
• Facebook groups provide an opportunity to pose questions and share experiences with other parents. A quick Facebook search will likely yield many different groups, depending on your child’s condition or need. Gillette Children’s Specialty Healthcare hosts groups specifically geared toward cerebral palsy and spina bifida.
• Many care providers, including the experts at Gillette Children’s Specialty Healthcare, offer resources for children and families. Social workers, music therapists, child life specialists and others can offer support depending on your area of need.

Ultimately, it’s important—for you and your child—to stay connected. Surround yourself and your child with supportive family, friends and professionals. Talk with loved ones and other parents. Listen, learn and share. We all benefit when we have supportive relationships with one another.   

Richard DiPrima, PsyD, LP, is a neuropsychologist at Gillette Children’s Specialty Healthcare.

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