Anticipating a child with special needs is in some ways like preparing for a storm. For this event, the doctors and other professionals are your meteorologists. So many possibilities run through your mind as one awaits the impending storm: Will the storm be full strength by the time it reaches land? Will our insurance cover any damage that occurs? And do we have enough food and water to last us? Regardless of how thoroughly you prepare, there's no way you can know exactly what you will need and what will occur. You can, however, count on people—even health-care professionals—to put their foot in it on occasion.
Managing all the unknowns is not always enhanced by the doctors, therapists and educators. During the first week of my son's life, he was cared for in the neonatal unit of a hospital. A nurse, unaware that I was the parent, said to me, "Oh, that poor little boy makes me so sad." In the moment I ignored this Debbie Downer comment, but I later spoke with the nurse's supervisor about some bedside-manner training for her team. At best, the trained staff could keep their pessimistic comments to themselves.
The day after my son was born, an older doctor visited my hospital room. He said hello, looked at our chart and then began looking for "signs" of Down syndrome in my son. Was he floppy? (Floppy is a term used when children have low muscle tone.) Did he have space between his big toe and others? He did several other tests, none of which seemed to point to a diagnosis. I finally asked the doctor to leave because we were tired, and that if our son had Down syndrome, which he does, we'd have a lifetime to prove it.
" ... most of them stop learning at age 7."
During our first visit to the pediatrician, the doctor told me that children with Down syndrome have a higher risk for leukemia than other children. While doing an Individualized Education Program (IEP) for our son, a special-education program director shared that she had worked extensively with children who have Down syndrome, and that she discovered that most of them stop learning at age 7.
At the very beginning of this journey, I learned to question the doctors and professionals. Even though they are well educated, they often do not have the answers or experience to determine the future of any particular child. But because they are the pros, and parenting a child with special needs creates deep feelings of vulnerability, it is easy to believe that the doctors are all-knowing.
Yet, in the face of many uncertainties, I believe it is my job as a parent to offer my child as much love and as little fear as I can possibly provide. There is nothing that anticipating leukemia can do to help me with getting out of bed, preparing breakfast, kissing my son good morning and starting our day. Some crazy %#*$ doctors say to this parent of a child with special needs just goes in one ear and out of my booty.