Category Archives: social work

Understanding the Grieving Process for Parents of Special Needs Children

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.

Sharon & Alison 2.jpgFirst, 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.

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Photo from Rich Howe

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:

shockDenial/Shock

  • 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.

Anxiety

  • With the loss of a dream, parents are forced to change
  • Anxiety mobilizes the energy needed to make these changes

Fear

  • This stage speak to itself! The questions come “Will he walk, Will she talk,” “Will he go to college or marry?”

Depression

  • 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.

anger

Pain/Guilt

  • 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?”

Anger

  • 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.

renee

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.

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How to Talk With Your Child About Their Disability

By: Susan Diver, MSW, LSW

I have been working with families and children with disabilities for more years than I care to admit.  It is a great job that I love very much.  The best days are when you feel like you have made just the smallest difference in the life of a child, a sibling or a parent.  I talk to parents every day about a large variety of topics dealing with their children; potty training, behavior, siblings, school, anxiety, bullying, respite, the list goes on and on.  If I was to address every topic that caused a family to be stressed, this blog would turn into a very long research project.  For today, I am going to talk about a topic that parent of children with a disability often ask me, “how do I talk to my child about their disability?”

You know your child the best; you understand their many moods and your strong personality will get you through a difficult but necessary conversation.  So put on your gym shoes and jump right in and get started.

Here are a few suggestions to remember when you have that conversation with your child about their disability:

  • Think about your child’s cognitive level, start there.
  • Be comfortable in what you are saying, rehearse, practice, talk it thru several times before talking to your child.
  • Be honest!  My Grandmother told me, if you always tell the truth, you’ll never have to remember the story you told and tell it again, stick with the truth, it’s safe, easy and there is nothing to remember. if you always tell the truth, you’ll
  • Be Consistent…….once you have decided on what to say, how to say it, always use the same story, wordage to talk to your child.
  • Be strong!  You cannot be sad, cry or talk about how bad you feel.  You are simply telling your child what is their disability.  The stronger you are, the stronger they are!  The more positive you are about who your child is, the more positive they will see themselves.
  • Check your guilt at the door!  You cannot use this as a time to relieve your guilt about your child’s disability, this is a time that it’s not about you, it is about your child!
  • Pick teachable moments; when your child brings up the topic, when a question is ask, when he’s in the back seat of the car, when something has happened at school or a party.  But make it when your child is calm, not upset or crying.  This is not a good time, when your child is upset, just like you; they won’t hear you or what you are saying.
  • Follow your child’s lead-Long before they ask you about being different, they will know they are different!  Use questions to see what they know, what they have overheard, what they understand.
  • Try to talk when your child is alone.  You will know their cognitive level, what they understand, how best to talk to them, a sibling or other family member may have a higher or lower level of understanding and they will ask too many questions that will interfere with your talk.
  • Be ready…the time will come that your child will ask, “why am I different,”  “why can’t I run like Billy?”  It’s coming, so the sooner you are ready, the better prepared you will be!

Siblings will want to know too! Use the same skills we’ve just talked about, use the same “story” you have used with your child.

For more information about Easter Seals DuPage & Fox Valley please visit EasterSealsDFVR.org.