…I am angry. I work with nursing students and I was enlightened yesterday. At my job, I am an RN for an amazing home visitation program for families who have special needs children. As RNs, we visit these families and do assessments and provide support. I did not have any home visits to send the students on yesterday, so I had assigned each student old medical cases and asked them to present how they would medically assess the infant and assist the family in the home.
When they were done, I sat with the students and they said that on one of the cases, they had decided to meet as a group because of how hard it was. I knew the case they were talking about, and I thought that this was a good plan. The baby had some pretty complex medical needs. However, I was absolutely floored when they asked me how they should broach ‘family planning’ with the parents. I must have looked puzzled because they explained that the mom and dad had other kids with this disorder and certainly they needed to be educated on not having more children….These nursing students did not have questions about the medical needs of this complex child, they wanted to make sure the parents did not have another child like this one….and my stomach churned and I bit my tongue.
I walked in my office and grabbed a picture of my son (who has some complex medical issues) and I put it on the table. I said, “the minute you talk to me about family planning and the idea that I shouldn’t have more children like ‘this’, is the minute you will never set foot in my house again”. “You guys devalue a child, when you do this”.
I had hoped that I had gotten the message across, when one of the students speaks up and says, “oh I have heard that kids with down syndrome can now live to be adults”….
This whole interaction prompted me to write some thoughts.
I am writing this to everyone who provides care to children. I am an RN and also a mother to six amazing kids. I spend my days working with families who have special needs babies and children. There are things you need to know; things that these moms and dads need you to hear. Things that I need you to hear..
I wish you would see that my child is flesh and blood, snuggles in the evening, and silly giggles when he’s nervous. He is a child first, and has a diagnosis last.
I wish you knew there were things that I could teach that you’ll never find within a book. I live with his “diagnosis” every minute of the day, and no one is more expert than I. My mother’s heart is in tune to every breath and hiccup, cough or sneeze. He does not speak well, but I understand him loud and clear.
I wish you knew that I desperately desire my child to be valued. I don’t need you to point out his inadequacies or his failure to meet neuro-typical milestones. I do need you to point out how well he is walking today, and how he looked you in the eye when you called his name.
I need you to see the whole picture. I have laid my baby in the hands of a surgeon, opened my home to every specialist known to man, and travelled hundreds of miles to wait hours in a waiting room only to spend 10 minutes with a doctor. I have laid bare my heart and home to help my child. So when I miss an appointment or don’t follow through on a therapy, there is a reason. Most often it is choosing a childhood for my child, instead of a new therapy.
I wish you’d move your eyes from your chart, and look. Look at my child and see that he is more than a piece of paper, a jumble of abbreviations, or a grim prognosis. He is more than a textbook or a medical journal. If you must label him, may I recommend “amazingly awesome”.
There are days I’m lonely in a world of discrimination, ignorance, and judgmental stares. But there are also days I am exposed to the most beautiful kindness and love; days a milestone is actually a miracle, and a hard fought battle is actually won.
I wish you knew that “oh he looks normal” or “you must be a special person to raise a special needs child”, is not a compliment.
I wish sometimes you would just listen…and hear…and see. Perhaps you’d catch a glimpse of who my child really is, not just what you read on paper.