“Tell me about your son.”
These were the words I heard over the phone three years ago while searching for a doctor who could give psychological help to my 19-year-old son who has Prader Willi syndrome. In all my years of raising him, this was the first time anyone ever asked me to do this. Surprising? Well, maybe, but true.
Prader Willi syndrome is a life-long complex genetic disorder (Chromosome 15) resulting in a number of physical, psychological, social, and emotional problems. Affecting growth, appetite, cognitive function, and behavior, it is believed to occur in one in every 12,000 -15,000 births.
Most of the doctors I contacted in my quest to find psychiatric treatment didn’t return my call; the few that did told me they weren’t taking any new patients. But with those wonderful five words, I found myself talking not only to a doctor, but to a person who cared enough about what I was saying to show me what the parent of a special-needs child longs for—concern. We spoke for 30 minutes. I wasn’t rushed. I wasn’t cut off. My answers weren’t assumed, nor talked-over with data or statistics. No, she listened to me, then spoke with understanding and intelligence.
I don’t know what I had done right that day or week or month or year, but this had never happened before, and it gave me much-needed hope. I was also shocked that this smart, patient lady didn’t have to be convinced to take us on. I didn’t have to jump through hoops, cajole, make promises, volunteer skills, or apologize for anything. She wanted to work with us. I began to feel the calming encouragement that having hope brings.
Then we went to meet her. She was everything positive I had sensed over the phone—and a great deal more. In the three years she has cared for my son, we have always left her office having been heard correctly and responded to with clear understanding. We don’t sugar-coat our lives in sessions because that just misdirects the conversation and, therefore, treatment. We are real with Dr. S and our realness is accepted; I continue to see my son’s improvements and his happiness.
When my son was a baby, I was as determined as most young moms to jump over the moon daily to help him with his many challenges. Over the years, the moon got further and further away, and then, when he was nine, my husband left the family, leaving me to jump alone as a single Mom.
The difficulties of raising a child with special needs stemming from a rare condition are quite often downplayed or misunderstood in everyday life encounters. Folks will volunteer their unsolicited, more-than-third-hand-experience of their neighbor’s friend’s aunt’s stepson’s cousin who is “just like your son.” Nope, I say. I doubt it. My son has Prader Willi Syndrome. They continue, “Yeah, he’s just like him.” No, he isn’t. I usually interject that my son doesn’t have autism, a fact they can’t seem to grasp.
I acknowledge that their persistence in linking my son’s disorder to the far more common condition of autism is a well-meaning we-all-have-something-to-deal-with-attempt at comfort. They often seem to be pointing out—by their observance that my son isn’t melting down in front of them at that moment—that I am so much better off than the aforementioned family. In these encounters, I recognize that people are basically good and want to uplift with kind words, and I view their efforts through a magnanimous lens. But in almost 23 years of guiding my son in his daily navigation through the complex world of Prader Willi syndrome, “Tell me about your son” continues to be the priceless gift that I needed—and continue to need every day.
My fervent, paying-it-forward wish is that doctors and educators routinely make this request—“Tell me about your child”—to parents of special-needs children. And that they listen, as Dr. S. listened to me, in order to understand each child’s individual journey. I pray that this gift of hope I cling to, more days than not, will be readily available someday to all the families of special-needs children who need it.