By: Sharon Pike & Cara Long, Parent Liaisons
It’s graduation season! We love seeing and hearing about the accomplishments of each graduate and their hard work! But for some parents, seeing their child’s peers reach graduation or other milestones, can trigger many emotions, especially if their child has a developmental delay or disability. For some children, these milestones will come much later or maybe not at all. We hope to give you a greater understanding of the process families experience in coming to terms with a child with a developmental delay or disability. We speak from experience as we each have a beautiful young woman with a disability.
First, after the birth of a child with special needs, the diagnosis or incident that changes their child, parents will grieve the loss of the “perfect baby”, they’ve dreamed about. They grieve the dream, not the child.
Dr. Ken Moses is a psychologist who has devoted himself to helping people deal with crisis, trauma and loss. He describes it beautifully and accurately, “Parents generate core level dreams for their children even before the child is born. Disability shatters those dreams. Grieving is the process where by parents separate from those shattered dreams and begin creating new dreams.”
He also says “few would argue that facing the devastating and continuing loss of having a child with a disability is among the most painful experiences that a person can confront. To separate from a lost dream, one must experience and share denial, anxiety, fear, guilt, depression and anger in whatever order or manner the feelings surface.” You can read more in The Impact of Childhood Disability: The Parent’s Struggle.
We recognize that for many parents this is their first experience with a disability and it unfortunately takes time to gain the insight needed. We want to help you work through the states of grief Dr. Moses mentions, so you aren’t stuck in a certain stage and can see the great potential in your child. This potential might be different than you imagined, but is still a wonderful journey.
We agree with Dr. Moses that the process takes time and honestly never really ends. We learn to reshape our dreams with the help of the professionals we surround ourselves with. But grieving is the only way we can move on. The parents who resist this process, become worse not better in response to the loss of the dream.
Below are Dr. Moses states of grief that you may be familiar with but need to recognize and move through them on this journey:
- This stage gives parents the chance to “feel it” and start to find support and ways to navigate this new world they’ve been dropped into.
- It buys time needed to blunt the initial impact, to discover inner strengths, find resources.
- With the loss of a dream, parents are forced to change
- Anxiety mobilizes the energy needed to make these changes
- This stage speak to itself! The questions come “Will he walk, Will she talk,” “Will he go to college or marry?”
- This stage is one that parents can feel repeatedly over the years and it’s depths can be simple sadness to deep, long lasting depression that needs medical intervention.
- This stage also gives parents the chance to “feel it” to “question it” and ask themselves “What did I do to cause it?” “Why did my body fail?”
- This stage parent ask,”Why me, why not you?”
- A parent’s sense of justice is challenged
- Their anger is often directed at someone or something (child, medical professional, or spouse)
Acknowledgement and Hope
- Parents have come to grips with the fact, this is life and with modifications they can still live the dreams they had for their child and family.
- They learn that there is always Hope.
This journey is reflected in this poem from a parent of a child with autism.
What You Should Know About My Child
by Brian Rubin
Remember that he is, first of all, my child.
Let me see him smiling in his sleep.
And let me think how handsome he is.
Help me not lose sight of my son
In the sight of his limitations.
I know that you care for my child,
And that you work hard with him.
I need your expertise to help him become All that he is capable of being.
You need my help in understanding who he really is.
And in the following through at home
With things that are important.
Remember though, that you send him home at night,
And have weekends off and paid vacations.
Let me have the luxury of having a vacation…
Sometimes physically, sometimes emotionally.
For a day… a week… a month..
Without your judging me.
I will be there for him when you are long gone.
I love my child with an intensity that
You can only imagine.
If on a given day, I am tired or cross with him,
Listen to me.
Lighten my burden.
Do not judge me.
Celebrate with me.
Rejoice in who he is and who he will become.
But forgive me if, from time to time,
I shed a tear…
For who he might have been.
This journey is hard and can be isolating, especially for parents of babies with challenges. But you are not alone. We are here to support families through this process. We can be your sounding board and help find whatever resources you need. To learn more about our family services, click here.