Special Needs Parents: How to cope with grief

mother baby

Three times in the past two weeks I’ve been asked, “How do you remain so strong?  How do you cope day-to-day?”

The Process of Grieving

That’s a big question for many parents of children with disabilities or medical needs.

The famous “five stages of grief” aren’t necessarily predictable when a parent is dealing with a child’s loss of health or developmental skills.

The denial, anger, bargaining, depression and acceptance may be a whirlwind; one or more stages may pop up unexpectedly when a child misses a milestone (I was hit hard when my 3 year old began to surpass his 9 year old brother in many developmental areas); or the parent may find a completely different way of coping and problem-solving.

The Right Way to Grieve

Married with Special Needs Children

There is no such thing as a “correct” way to grieve.  At one end of the spectrum, a parent may suffer symptoms of Post-Traumatic Stress Disorder, especially after witnessing a child’s medical procedures or life-altering events.

At the other end of the spectrum, some parents report no feelings of grief or loss, and take a pragmatic approach to supporting their children’s needs.  According to Laura Marshak and Fran Prezant, co- authors of Married With Special Needs Children, these are all healthy, natural reactions.

My Losses

When I realized that my son was developmentally delayed and would not have a typical childhood, I felt a sense of loss on many levels.

First there was the loss of my own expectations for my son.  I also walked away from my teaching career and my incomplete doctoral dissertation to care for my son full-time.

I lost my health, partly due to the stress of being a caregiver, with frequent infections, chronic thyroid problems and even cancer.

I lost many of my friendships, professional relationships and family relationships because I was physically and emotionally unavailable to everyone except my son.

Feeding and calming my son required 100% of my energy around the clock, and he did not accept alternate caregivers. I packed up and moved to Planet Autism.

Emotional Memory

Ten years later, I still feel sadness or sorrow from time to time.  Both of my children were screamers when they were little; so when I see relaxed, happy, social babies and toddlers, I am reminded of what I missed.

“But you have two beautiful children,” a friend told me when I confided this to her.  I do enjoy  and cherish my children – even at their fussiest!  But I also remember the stress of not being able to comfort my baby, and knowing that the intense, long periods of screaming were a symptom of a larger, lifelong issue.

Emotional memories such as these can be triggered at any time by a reminder of an emotional event.

OK, so grief and sorrow are normal for parents of children with special needs.  The question is:

What am I going to do with my grief?

1. The Calm Mom

Becoming a Calm MomI’ve found that the same methods that alleviate my son’s panic attacks also help me deal with everyday stress.

In her book Becoming A Calm Mom, author Deborah Ledley recommends tools for developing a calmer lifestyle based on the principles of cognitive-behavioral therapy.  She starts with identifying the negative thoughts and behaviors that a person wishes to change.

It is necessary to allow enough time to make big and small decisions, since those are a major source of stress for parents.  Time is also needed to strengthen communication and relationship skills, because honesty and reciprocity are the fast track to becoming calmer.

When these new habits are in place, breathing exercises, positive visualization, muscle relaxation and other relaxation strategies provide physical and emotional calmness.

2. Spirituality

On many days I think that the only two things going for me are my maternal instinct and my faith in a higher power.  Each day begins and ends with prayer.  During the day, I consciously try to offer every breath of my body as a prayer.

My autistic son has been my spiritual teacher since the day he was born.  Because of him, I feel the connectedness of life more fully, and my perceptions of the world are heightened – colors are brighter, emotions are stronger, moments seem frozen in their sweetness and fragility.  I carry those moments of awareness with me during my darkest hours.

3. Volunteer Work

Volunteer WorkSometimes it helps to remove the focus from my family’s needs and to do something to help others. I’ve been doing various types of community volunteer work with my kids since they were babies.

I once taught an adult education class while wearing my infant son in a sling.  When my son was a toddler, we assisted with worship services at a nursing home.  I always have my younger son with me when I volunteer at his older brother’s school.

Last summer we ran a lemonade stand at a community garage sale and donated all of the proceeds from the lemonade stand to a community group.  If I can’t find a volunteer opportunity where my kids are welcome, I create an opportunity!

4. Research And Advocacy For My Child

I may as well come out and admit it: in my heart, I’m still an Ivy League academic.  I dive right into the medical research databases, and I know what baloney smells like.

I am able to discuss my son’s education and therapy with intelligence and clarity, and I am able to exchange helpful ideas with his team.  I am able to implement the results of my research at home, and I’ve seen my son benefit from my efforts.  That’s empowerment all around.

5. Learning To Enjoy My New Normal

I could complain for a really long time about the 10 years of sleep deprivation torture that I’ve endured.  But complaining doesn’t change it.

Instead I choose to reflect on what those long nights have revealed to me: the hours spent cuddling a wide-awake child on the sofa in the dark; the long walks at the crack of dawn; knowing that I don’t regret my losses, because in return I gained something that I had never imagined.

6. Keys To The Universe

The Autism Mom's Survival GuideI recently discovered The Autism Mom’s Survival Guide by Susan Senator, an outstanding book about everyday coping.

The author emphasizes the importance of self-care for all caregivers.  She interviewed parents in the autism community and drew from her personal experience to produce a list of suggestions for dealing with stress, which she calls “The Keys to the Universe: Small Pleasures That Make A Big Difference.”

Some of the items on the list include:

  • Taking just a few minutes to spend on a hobby
  • Meeting a friend for dinner or coffee
  • Making the beauty of nature part of the day (even if that means just buying flowers at the grocery store)
  • Listening to music
  • Visiting a website that helps you with your overall life philosophy
  • Stimulating your intellect
  • Challenging yourself physically
  • Indulging in a small treat.

Grief, sorrow and all types of intense emotion can change anyone, for better or for worse.  I know that I am a different person now.  But maybe this is the person I was supposed to be all along.

Karen
Subscribe for a free ebook
Meltdown Management
Join the current subscribers
  • http://www.facebook.com/tanyalundberg Tanya Juarez Lundberg

    What a fantastic article! Thank you for your honesty, I’m sure it’s tough to share so much sometimes. I think #4 and #5 are so important. You have been and always will be one of my role model moms – it is amazing to watch you with your children :)  

  • Betsy

    karen, I find your articles very valuable for helping me to understand better the realities of autism for both the child, mother, and family. Thank you for your efforts, including your research, thoughtfulness, and honest sharing!

  • Julie Lublin

    Karen, your courage is inspiring.  Thank you for sharing.  I think this article is helpful and insightful for all parents.

  • Anne N.

    1. You talked about having heightened perception of the world, including stronger emotions. I guess that means stronger “negative” emotions too– thank God for the good ones for balance! 2. Bravo for raising awareness that the experience of grief is real and it’s ok (and I’d say necessary) to go through it. Even with the loved one living in front of you, we grieve a situation, or the loss of expectations we’d carried for ourselves and/or for our loved ones. When I heard a counselor explaining this concept, suddenly my own emotional experiences were framed in a way that made lots more sense to me. And I could validate my feelings. Word needs to get out, thank you

  • Gabriella

    I needed to read this today.  You touched on all of the issues I’ve been dealing with since the beginning… I could easily have written this myself!  LOL!  Thanks for putting it out there in black and white.  It was important for me to look in the mirror – caring for others and complaining about sleep deprivation (and even being angry about it) pays a toll.  

  • Jkschott

    Dancing with Max was also a great book about a mom and her autistic son.  Thanks for sharing your post!

  • http://twitter.com/Catalysts4Hlth blessedbyautism

    Gorgeous post Karen! 

    Autism rights activist Jim Sinclair wrote: “Parents often report that learning their child is autistic was the most traumatic thing that ever happened to them.”  Of course this is not true for everyone and most of us don’t stay in that place of grief, but letting ourselves be okay with it is an important part of the journey to become, as you say in your conclusion, the people we were always meant to be.

  • Tammy

    Dear Karen, as we walk through the similiar pass- climbing the high mountains or walking through the dark valley, your honest sharing and courage help us to feel no alone.  Thank you.

  • Louise Horste

    Thank you very much for sharing!  I would like to post this on my wall on my Facebook if that is okay?  I have a few friends that could use this right now. You will help others as well.   Beautifully written!  I know that when the weather gets nicer we’ll have a playdate with the kids but we could also get together just you and I away from the kids too. It’s always good to have some ”you” time too!   Let me know and we’ll have to get together!

  • Fr Deacon Lawrence

    Great article Karen!  You are an Ivy Leauger & a Champion of the West in my book!  Thanks for all you are & being the woman God called you to be!

  • http://www.veloteca.ro/ Rachel Sinha

    Great read!! Love reading your blog! Keep posting good stuff like this.

  • Pingback: Nuggets of Wisdom on GRIEF from Jolene Philo « MINISTRY MOMENTS

  • Pingback: Links of Interest for Parents 3-20-12 « principalberry

  • Joe Hoskins

    Great perspective. Thanks!

  • Mom

    Thank you for the ideas.  I often feel like I feel sorry for myself, wishing I had what others have, etc.  I’ve been looking for ideas to get over this, so thank you.

    • http://www.facebook.com/profile.php?id=1556774338 Karen Wang

      Thanks for your response, Mom.  You’ve taught me a lot about this subject.  For me, it’s not a matter of wanting what others have, but it’s more like planning to have oatmeal for breakfast, and having scrambled eggs instead.  Since I had planned my life as A-B-C-D, I logically expected it to continue with E-F-G.  But instead, the next steps were 27, ! and orange.  It’s still an intellectually and spiritually rich life, but definitely not what I expected.