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Supporting Parents of Children with Developmental Disabilities on Their Unexpected Journey

As I was preparing for a parent conference, gathering information on autism and making copies to provide to the parents, I realized I was anxious. My stomach was in knots and I asked myself why I was nervous. It dawned on me that I was getting ready once again to tell parents that their child has autism. My experience when delivering such a diagnosis is that it often ends with parents crying, questioning whether their genes were responsible, and asking themselves “Why me?” or “Did I do something wrong?” Hence my anxiety. Their reactions can make it feel as if I’m giving their child a poor prognosis.

A poem I once shared in a parent support group, “Welcome to Holland,” exemplifies the range of emotions I watch parents go through. It compares the experience of expectant parents to that of travelers who are headed toward one destination (Italy) but find themselves in an entirely different place (Holland). To elaborate further, the writer of the poem has a child with a developmental disability; she is using the travel metaphor to explain why it isn’t necessarily a bad outcome to wind up in an unexpected, unplanned destination.

Most couples, for example, are extremely happy and excited about becoming parents for the first time, and look forward to the new adventure of raising a child. But as with people who are planning a trip, the journey can take an unexpected detour—that is, giving birth to a child with disabilities. Suddenly their entire world is turned upside down and their intended destination becomes one they hadn’t planned on. The overall theme of the poem is that families can discover acceptance and happiness even if they find themselves in a place or situation that they didn’t necessarily want or expect. Returning to the travel metaphor: Italy might have been the intended destination. But Holland might turn out to be an equally rewarding place to be.

This poem became personal when I shared it with my daughter shortly after my granddaughter was diagnosed with autism. I spoke to my daughter to learn how she was feeling about this new journey. She had made her peace with it before the diagnosis, she said, having already seen signs and suspected the diagnosis. On the other hand, my son-in-law was in denial, and acknowledged the diagnosis only when the developmental pediatrician confirmed that my granddaughter had autism. The trip to acceptance takes more time for some parents than it does for others.

It was bittersweet to provide my professional opinion to my daughter about the diagnosis. The news was unwelcome, but it meant she was also able to move quickly to investigate resources available to help my granddaughter. The experience also brought me closer to the families I speak to regularly.

As a professional, I make it my mission to help parents process the information they receive, and allow them to cry and question. I also do my best to help them understand that it’s not anyone’s fault.

The trip to Holland didn’t turn out to be what the parents in the poem expected; sometimes plans don’t work out. But now those parents and other parents of children with developmental disabilities are on a different adventure, learning to accept and embrace their beautiful, unique, gifted, and special autistic children. As clinicians for and relatives of these parents we should let them know that they are not going to take this journey alone, and that together we will do all we can to help. It will not be an easy trip, but together we can make it an easier process, allowing them to fully love their children.

Diana Rodriguez is a senior social worker and the cultural diversity coordinator for Rose F. Kennedy Children’s Evaluation & Rehabilitation Center at Montefiore.

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