Friday, July 30, 2010

Article Review: The Impact of Childhood Disability - The Parent's Struggle

A blogger friend who writes at Chase and More shared an interesting article called "The Impact of Childhood Disability: The Parent's Struggle" written by Ken Moses, a psychologist who helps people with crisis, trauma and loss. His article describes the grief that many parents of a child with an unexpected disability experience after receiving the diagnosis. It reminded me of the kind doctor who spoke to us after receiving Matthew's diagnosis. He told us that it was ok to grieve and that it was part of allowing ourselves to let go of the child we thought we were going to have. It was a process that helped us move on to love our child as we would any other child we would have and build new dreams together.

Here is an excerpt from the article that accurately describes the grief that I experienced:

Parents attach to children through core-level dreams, fantasies, illusions, and projections into the future. Disability dashes these cherished dreams. The impairment, not the child, irreversibly spoils a parent's fundamental. heart-felt yearning. Disability shatters the dreams, fantasies, illusions, and projections into the future that parents generate as pan of their struggle to accomplish basic life missions. Parents of impaired children grieve for the loss of dreams that are key to the meaning of their existence, to their sense of being. Recovering from such a loss depends on one's ability to separate from the lost dream, and to generate new, more attainable, dreams.

As disability bluntly shatters the dreams, parents face a complicated, draining, challenging, frightening, and consuming task. They must raise the child they have, while letting go of the child they dreamed of. They must go on with their lives, cope with their child as he or she is now, let go of the lost dreams, and generate new dreams. To do all this, the parent must experience the process of grieving.

Have you read it? What do you think?


Cheryl said...

Ria,Thanks for sharing this.What a great article.I think Dr.Moses is right about parents of children with a disability going through a grieving process and needing to talk with others about it.
I started to feel better after I found the community of blog mom's who have children with Down syndrome and could talk about my feelings with people who understood and let me know it was normal and alright.

TUC said...

I think I experienced some grief while she was still in utero (I think my What's She Worth post is a reflection of that grieving process)... and yet most of what I dealt with was overcoming fears... fear that she would die, fear that she would be ridiculed & rejected, fear that she would be dependent on others more so than most of us. Once I was able to deal with those fears (which still do crop up now and then), I was good to go. I wonder how (and if) it is a different process for those who know before and those who are surprised.

Violette's Mom said...

Very interesting article - thank you for sharing this! I went through so much of what is discussed in here (though I didn't delve to far into guilt, lol. I knew enough about DS to feel like it was my fault, plus I felt a very strong pull to have a 3rd child dispite my AMA.)

The big thing that struck me was the part about dreams. I found that after Vi was born I didn't dream for several weeks. At all. I was either asleep, or awake, but I didn't ever dream. I realized it one day, and started thinking about what was safe for me to dream about...that seemed to be a turning point for me!