Mourning Our Child

In most parenting workshops and books about children with special needs labels, time is spent on the idea that parents must mourn the loss of the child they thought they were going to get in order to appreciate the child they did get. It is a constant challenge to take what life gives us and find meaning.
A well-known story by Emily Pearl Kingsley describes what it is like for parents when they discover that their child has a disability. Imagine that you have planned a trip to Italy. You have learned the language and the culture, and you are excited about being in Italy. But when you finally arrive and get off the plane, you realize that you have landed in Holland instead. Now you have to plan differently, learn a whole new language, get to know a whole new set of people with different customs and ways of being, and you also have to give up on your dream of being in Italy. But as Kingsley writes, “if you spend your life mourning the fact that you didn’t get to Italy, you may never be free to enjoy the very special, the very lovely, things about Holland”  Many parents know this story but feel there is not a lot that is lovely about parenting a child who struggles or perhaps rages at life. It takes awhile to understand that letting go of the belief we were supposed to have a different life or child is necessary to create the space for the lovely things about parenting our child to occur.

Another way to lessen the grip of mourning for the child you hoped for and expected to have is to see the world through your child’s eyes. The grief may feel real but it has nothing to do with the child. Too often when we label a child with a disability we follow by saying I wish my child did not have autism, Down syndrome, dyslexia, attention deficit disorder, bipolar disorder, or whatever is your child’s label. What parents are actually saying is they wish their child did not exist and they had a different “normal” child. Imagine what this conveys to your child and how they feel. Loving your child unconditionally means loving all parts of your child, the stuff you do not understand and makes you uncomfortable as well as the good stuff. We do not want to get sucked into the shame and blame game; however children’s behavior changes when they are accepted for who they are. Imagine adults joining the child’s world in total acceptance rather than forcing the child to join the adult’s world.

People within the autism spectrum have been around long enough for the adults to now write about and express what it is like to grow up with autism and they have much wisdom to impart which is applicable to all the different labels we give children. Jim Sinclair an adult with autism writes, “You didn’t lose a child to autism. You lost a child because the child you waited for never came into existence. That isn’t the fault of the autistic child who does exist, and it shouldn’t be our burden. We need and deserve families who can see us and value us for ourselves, not families whose vision of us is obscured by the ghosts of children who never lived. Grieve if you must, for your own lost dreams. But don’t mourn us. We are alive. We are real, and we’re here waiting for you.”  (

Categories Beyond Labels | Tags: | Posted on January 10, 2010

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