It Takes a Sensitive Village to Raise a Child with Special Needs

By Karen Zilberstein, LICSW

Raising a child with a disability is a journey that is never easy. In addition to the emotional challenges, it can be incredibly difficult to gain access to necessary support. Too often, parents feel entwined in bulky bureaucracies that cannot bend sufficiently to their needs.

Well-off parents and those with college educations generally fare better than poorer ones, readily challenging decisions with which they disagree, sometimes by hiring advocates or lawyers to bolster their causes.

But what about those families struggling financially or facing other hurdles such as lacking an understanding of how to self-advocate and access to advice? This makes the journey all the more difficult. Systems of care have simply not kept pace with these challenges. Nor do public policies appear poised to alleviate struggling parents’ toils. In 21st century America, access to means, resources, and knowledge are not evenly distributed, causing many families with disabled kids to get left far behind.

When parents raising children with disabilities need extra help or struggle with basic survival, what can we, as a society, do?

Acknowledge their hardships

This comprises the first step towards funding service systems that are broad and deep enough to relieve, rather than add to, parental burdens.

Encourage innovation

Create services better positioned to provide families improved access to programs. Innovative services are receptive to time and place and accommodate an ever changing social and political landscape.

Remember the lessons of alloparenting

Alloparents, or non-parental caregivers by fathers, grandmothers, aunts, siblings, or others, provide crucial supervision and nurturance. Alloparenting has diminished alongside urbanization and the primacy of the nuclear family, yet its lessons should not be lost. Researchers find that social support is the most important protective factor for sustaining people and improving mental health.

Social supports can be created through more cohesive communities and systems of care designed to augment the tasks of parents. While building a sensitive village takes hard work, struggling families will only do better when they do not have to struggle alone.

Karen Zilberstein, LICSW, is a practicing psychotherapist and Clinical Director of the Northampton, MA chapter of A Home Within, a national nonprofit that provides pro bono psychotherapy for individuals who have experienced foster care. In her latest book, Parents Under Pressure: Struggling to Raise Children in an Unequal America(Levellers Press, March 2019), she provides a candid look at how parents contending with poverty, illness, disability, or other constraints are expected to do so much with so little—and the price they and society pay. In recognition of the families who gave their time and stories to the book, all author proceeds will be donated to charities that aid parents and youth.