Special needs parents: Getting past our grief

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In our previous article, A Question of Forgiveness, we talked about the people in our lives we should forgive, including ourselves. This article addresses the grief we experience when we find out our child has a disability.

by Holly Olmsted-Hickey, One Place for Special Needs


Stages of grief: It's just a guidelinegrieving istock photo

Depending on where you are in your life, you may treasure every accomplishment of your child or grieve at every reminder that your child is different.

Elisabeth Kubler-Ross wrote a pivotal book in 1969 called On Death and Dying.  There is a psychological model that grew from that book known as The Five Stages of Grief.  It involves the reactions of a person to illness, death or overall loss -- life-changing or altering events. 

Kubler-Ross meant for The Five Stages of Grief to serve as a guideline or parameter – not to be taken literally or felt in a sequential order. Each reaction is as unique as the individual experiencing them.  Parents may not experience all, but probably at least two of them.  They may switch stages or go through two stages at once, while getting stuck in another.  They may surface at different times in your family’s life and return you to a state of anxiety, anger or depression. 

What are some things that you might think or say to yourself when going through the five stages of grief as a parent of a special needs child?

“Everything is just fine.”
Welcome to the denial stage.  This is the stage where there is almost unbelievable shock or understanding that there could possibly be a problem with the perfect vision you have of your life, your child or your future.

“This is YOUR fault!”
The powerful feeling of anger erupts in this stage.  No longer believing that everything is fine, you might start blaming circumstances and questioning facts.  This is a stage where you feel it is unquestionably unfair that this is actually happening to you.

“I will do anything to change this for her.”
The bargaining phase can be a dangerous phase for some people.  You want so much to make life different that you are willing to try or do anything to make the situation and yourself feel better.  It can also be a phase of empowerment for a parent to actually try to divert the plan to something new and different.  Regardless, there is a sense of desperation and being out of control.

“Why should I even bother?”
The depression phase is where the actual grieving process happens.  The feelings of hopelessness, helplessness and sadness are intense.  Parents in this stage see no silver lining.  There is no happy ending.  There is a void.

“I can deal with this.”
Acceptance is the stage where there is an understanding.  It is an understanding that in spite of the circumstances and in spite of the obstacles in front of you, there is still happiness.

Consider counseling
Do you have difficulty in dealing with the stages of grief?  Consider counseling or the support from others going through the same thing. “Treating the family as a whole is important,” notes clinical psychologist Aimee Koerner-Frank, PsyD. of Charlie’s Gift Autism Center in Downers Grove, Illinois. The ability to address families’ needs seamlessly is difficult, but is a task that can be overcome. Dr. Koerner-Frank says,  “Parents of younger children are often mourning the child that would have been.  Parents of an older child may need more specific life transition services” while moving through different stages of grief and loss.  Dealing with loss is ongoing for families with special needs.

Psychologists like Dr. Koerner-Frank can offer support and recommendations on other developmental specialists including psychiatrists, occupational or speech therapists.  They can also help set priorities when the tasks of working with so many specialists, diagnoses or issues are overwhelming. 

Consider volunteering
Participating or volunteering in an organized group of faith can help fill voids and work through feelings.  The V. Rev. Dr. Steven C. Salaris, M. Div., Ph.D. of All Saints of North American Orthodox Christian Church outside of St. Louis, Missouri, offers these faith-based thoughts, “First & foremost, the Church recognizes a person with a challenge, special need or disability as a whole person.  There is still dignity to all people regardless of their disability or challenge.” 

Father Salaris not only offers all things spiritual and sacramental to his parishioners, but he also helps families and individuals with counseling, contacting appropriate services, and making sure they are fully-integrated into the community.  

Families facing disabilities or special needs require and deserve a welcoming, loving, accepting faith-based community.  Father Salaris tells the story of a young boy with autism who now serves as an altar boy during church services.  “To see the pure look of joy on the parishioners’ faces for this boy who had come so far cannot be described,” he says. “We’re all God’s people.”

Working with people within the community to find a place for the gifts, talents and “holy noise” (the sounds and distractions that might come from parishioners during a church service) while educating the community “is just part of what I do,” he says.

Consider online support
Grieving parents can find ongoing support, camaraderie and resources from a variety of online social communities. Sonya Fox, one of the owners of Baby Center’s Children with Autism Spectrum Disorder group talks about her own experience with online support.  “This group has seen me through pre-diagnoses, diagnoses and post-diagnoses. It has seen me through denial, anger and acceptance. I could not have gotten the kind of support that I get from this group within the outside world.”

In many cases, parents can share their most intimate feelings with an audience that is fully understanding of special needs issues.  “I have come to find that many parents on this board do not have a great support system at home,” says Fox.  “There are struggles within the marriage, their family and their friends.  There are issues of doubt, judgment upon what you have done to help treat your child, lack of understanding and support and mostly, lack of knowledge about our children’s disorders.  None of that exists on this board and it allows me to get through troubling times and provides me with comfort and support to get through each day.”

Finding a supportive group can be the equivalent of a new “best friend” at a time when a parent is hurting and needs the most support.

Quality of life
Emotionally there needs to be resolution for a parent with a child who faces special needs.  Inclusion is important.  Figuring out how to live with one another is important.  There needs to be more overall understanding, support and forgiveness all around. Your emotional quality of life is just as important as your physical or spiritual quality of life. Find outlets that build up your emotional well being so you can function at your best when raising your child with a disability.

More reading

Coping with stress - Articles on handling the daily stress of being special needs family
Overcoming grief about the disability - Articles on getting through the grieving process after your child's diagnosis
Taking care of yourself - Articles on taking care of you

Holly Olmsted-HickeyAbout the writer

Holly Olmsted-Hickey is the married mom of two boys, an autistic spectrum teenager and a typically developing six-year-old, each with their own gifts and challenges.  She is the Development Manager for One Place for Special Needs and, in her spare time, the leader of The Windy City Chicagoland Apraxia Network and blogger/writer at waitingroomtherapy.wordpress.com.  She drinks a lot of coffee, plays softball to relieve stress and enjoys an occasional nap. Reprint permission granted if you include: Reprinted with permission from One Place for Special Needs http://www.oneplaceforspecialneeds.com

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