In all societies special children with unique medical problems exist. We know some of these children by special  names such as “autistic” or “retarded”. We say they have  cerebral palsy or brain damage. In England, some children  are openly called “spastics” and are supported by the  “Spastic Society”, the equivalent to our Cerebral Palsy  Society. Many times when my family encounters a family  with a special child, one of my children will ask me  (hopefully out of earshot of the child’s mother) what is  wrong with that child”. We all want to know how to label  the child. What we outsiders don’t realize is that these  children are the special loved ones of dedicated mothers no  matter what label we want placed on the child.

Through my whole career I have witnessed care given to  special children by their incredible mothers as a unique  kind of love. I came into my practice life with many  assumptions about these children and their parents that  were proven wrong through my experiences. Because many of  us have wrong impressions we say or do the wrong things to  mothers of special children. Perhaps by sharing some  lessons I have learned we can support these mothers and  fathers better.

Over the past twenty years I have had children in my  practice with various neurological and medical disorders  that required twenty-four hour vigilance from parents. I  have seen many of these children succumb to their illnesses  at early ages. It is in the losses of their special babies  that you learn the value they held for their families.  Time and again I was surprised at the extended mourning  process these families entered. Families heard phrases  from people such as, “now you can get on with your life” or  “it must be a relief not to be burdened anymore.” Each  time I heard from parents that these comments were wrong.  The parents made it clear to me that these children were  never considered a burden by the family. Often the family  bonded together in the service of their special child.  There was a special bond or love between these mothers and  their child. There was never any “relief” in their child’s  death. The deaths were huge losses for these families and  required months or years of recovery especially after years  of dedicated service to their child.

It is from these lessons of death that we can learn to  support the living. We can support families of special  children in a number of ways.

1. Respect them and recognize the special love that exists in the family bonds.

2. Get over your discomfort. We love to label  children with problems. It helps distance us from them. Accept that mentally retarded, spastic, and brain damaged children exist in every community. We need to accept them as they are.

3. There is no room for assigning fault. There is  no fault. This is very important for extended families. There is no use in declaring whose side of the family the problem “runs in”. Or that “I knew she smoked too much during her pregnancy”. These children exist and there is no need to assign fault or blame.

4. Listen to these families stories. Their stories  can be frightening and amazing. I know families that have rejoiced at every small sign of progress in their child – often a thing others take for granted such as a first step. Some of their stories are the most heartwarming you will hear.

5. Offer little things to help. No family of a  special child expects you to take over their child’s care. But doing something small such as offering to pick up things at the store for them while you are out shows kindness and understanding to that family of a special child.

6. Be a friend to them. Families of special children  get isolated in society and feel that isolation.  Stop by for short times or call to check in. I  know that it helps the family feel part of a  bigger community.

I remember in Honduras when a very ill child, Angela,  with a severely damaged brain from birth died at an  orphanage. The director of the orphanage gave a  wonderful eulogy explaining that Angela made her needs  known to those who were closest to her. And all of  Angela’s caretakers cried because they knew it was  true. The director went on “They knew Angela’s moods.  They felt her love.” It is through these words that  we must remember the value these children hold in the  hearts of those who care for them. And that value  demands respect from the rest of us.