Special Needs Families, Part I

“It’s like this…when you’re going to have a baby; it is like planning a fabulous vacation trip to Italy.  You buy a bunch of guide books and make your wonderful plans…it is all very exciting.  After months of eager anticipation, the day finally arrives…several hours later, the attendant comes in and says, “Welcome to Holland”.   Holland??  What do you mean Holland??  I signed up for Italy!  All my life I’ve dreamed of going to Italy.   But there has been a change in the flight plan.  You have landed in Holland and there you must stay.”  ~ Emily Perl Kingsley once wrote about having a child with a disability.

When parents give birth to a baby with special needs, their vision of the future is immediately and permanently altered.  But they do not cease to have dreams for their children; indeed, their goals become more focused and even more intense.

“Special needs” is an umbrella term for an overwhelming array of diagnoses that range from mild learning disabilities to profound mental retardation; from food allergies to terminal illnesses, from developmental delays to serious psychiatric problems.

Although each special needs child is unique and each family will face different challenges, most of these families share common concerns:  getting appropriate and affordable care; promoting acceptance of the special needs among their extended family, friends, school, and community; and planning for a future that is unpredictable in ways they could not previously have imagined.   These parents must learn to reach out, even if their instinct is to burrow in.

It takes a village to raise every child – and special needs families must build a village that includes not only their pediatrician but also nurses, therapists, nutritionists, clergy, and social workers.  Without this circle of support, special needs families will find their days so consumed with caregiving for the child in need that they can neglect the needs of other children in the family and their own relationship.  It is vitally important that special needs parents spend “alone time” together and make special time for their other children.  These parents must let go of the belief that they must be with the special needs child at all times; they must move past the guilt that could overwhelm, isolate, and exhaust them.

Special needs families will experience setbacks, grief, hardship, and worry.  They will also experience joy, hope, and the incomparable rewards of raising children.  This makes them like every other family, no matter how extraordinary their circumstances.