By Elisa Sanchez Wilkinson, Mom and Family Resource Specialist, Project for New Mexico Children and Youth Who are Deaf-blind
Abstract: The author walks the reader through current literature on the process families go through when they learn their child has a disability by relating it to her personal experiences.
Keywords: Family Wisdom, deafblindness, grief process, adapting
In our everyday lives we often wonder why some things make us happy and some things make us sad. It is the fulfillment of dreams and expectations that makes us happy. It is the loss of a way of life or of a dream that makes us sad, possibly even grieve. I am the mother of two beautiful children. My eldest child has dual sensory impairment and ambulatory issues. I grieve about many things. Do you?
I was watching the television show, Bridezillas1. I saw women who were typically nice, reasonably likable people turn into crazed, frenzied women with no regard for others feelings. I was amazed at their transformation. Why would a nice person change so drastically? These women have expectations of exactly how their wedding day is supposed to be. They have dreamt about the dress, the flower arrangements, the decorations, and the cake ever since they were little girls. To then have a wedding that may not live up to their expectations is beyond reason. They become a person they, themselves, would not recognize. Why? Because dreams are powerful. Fulfilling a dream means being successful and happy. Anything less means shattered dreams, disappointment, and sadness.
Loss and grieving are such complex emotions. This has become an interest of study for me. The loss of dreams/expectations is part of our everyday lives. So, that means that grieving is also a part of our everyday lives. So, how can these emotions be so foreign to us? Why do we try to repress grief when allowing ourselves to grieve may be as healthy for us as exercising? Dr. Ken Moses, PhD., a noted psychologist in the area of crisis, trauma and loss, has stated that people’s dreams can be shattered, even dreams that we are not conscious of having. Having children with perfect health, or living until we are old and dying in our sleep are a part of life that many of us expect to happen. What happens when those expectations are not met? We grieve.
Grief is profound. It is life altering. It happens everyday to everyone over situations many of us don’t even realize. The other day I was taking my son out to lunch. I was going to take him to a little deli that is delicious. When we got there, the deli was in the process of closing…for good. I was so disappointed. He was not ever going to taste the best meatball sandwich in the entire city of Albuquerque. It was an experience I wanted to share with him that is not going to happen. Yes, this is trivial compared to other losses in people’s lives yet it reminded me of what people often say to me regarding my son, “…he never knew what it was like before, so he really won’t miss it.” You see, my son has a below the knee amputation, this is the ambulatory issue he lives with. A procedure was done to save his life as a newborn, but with life altering complications. A catheter was placed in an artery and because of poor circulation in a premature baby, he threw a clot. After weeks of intrusive procedures nothing could be done. At four and a half weeks old, with pulmonary problems, my son experienced a below the knee amputation. Many people have said this to me, “…oh, well, he’s never known anything different so he’s okay.” Right? Wrong! Every time I think about the limb my son has lost, even if it was to save his life, I grieve.
How does a family react to the birth of a child that is different, a child who is not typical, a child with special needs? Ask a new dad who has already gone out and bought the little baseball glove and is dreaming of being his sons little league coach someday. Talk to a young mother who has carefully packed away her wedding gown in the hopes that someday her daughter will want to wear it. When the baby is born and he or she is born with a disability, the future is unknown. Dreams are shattered. The grieving has begun. How does a husband react to the loss of his wife, of many years, to a disease that slowly robbed him of her? The grieving continues. What does a person do when he/she loses a job that is desperately needed to support the family? The grief is real. The stories go on, so does the grief.
How do we deal with it? The Four Stages of Adaptation is a method of understanding where a person is emotionally, some of the issues they are dealing with in that stage, and how to be more comfortable with where he or she is. The four stages are Surviving, Searching, Settling In, and Separating. Every person is an individual and can move through the stages in his or her own way and time. It is empowering to know that there is no wrong way to adapt. A person can move into a new stage and then move back into a stage they may have been in previously. They actually have more of a circular quality than a linear one. Nancy B. Miller, Ph.D. M.S.W. wrote this in the book, Nobody’s Perfect – Living & Growing with Children Who Have Special Needs.2
The Four Stages of Adaptation are very real. Surviving is what you do to keep going when feeling completely overwhelmed because something totally out of your control has taken away your child’s equal chance at life. Searching is a stage where you are looking for answers for your child. You will probably have periods of Searching during your whole life with your child. There are two kinds of Searching, outer and inner. Outer Searching is looking for a diagnosis or services while Inner Searching is trying to find your identity as the parent of a child with special needs. Settling In is another stage when the frantic pace of Searching lets up. You begin to choose your battles and balance your child’s schedule and your family life. Not only has your Outer Searching subsided for a while, but more importantly, your attitude about it settles down. Separating is a normal, gradual process that occurs in tiny steps throughout childhood. When a child has special needs, the process may need to be altered or slowed down. Extra parenting may be required— you may have to initiate separation, plan it, find it, and make it happen. Letting go on your part is also necessary.
My son is 15 years old now. I move consistently between Inner Searching and Separating. I have protected him, taught him, and always tried to foresee any obstacles in his path. I have my dreams for him and his future; yet, I struggle with the need to “initiate separation and let it happen.” I have to find my identity as the parent of a child, turning into an adult, with special needs. As I look back on all the obstacles we as a family have overcome, I realize that I can adapt my dreams to match and support his. It won’t be easy but nothing worth having ever is. Will I still grieve? Of course, every time I see the obstacles he will face for the rest of his life.
In a way, I felt like the brides that envision a perfect day; I wanted my life, and the lives of those I love, to be perfect. My perceptions of “perfect” have changed. Grieving is part of my life and so is adapting to what comes my way. I wish I could tell those brides that the wedding is just one day. It’s the marriage you want to last a lifetime. Perfection is an illusion not worth grieving over if it is not achieved. Happiness is in learning how to adapt.
1 Bridezillas, where brides go from sweet to certifiable. (WEtv, Sunday 9/8c).
Taken from Nobody’s Perfect - Living & Growing with Children Who Have Special Needs by Nancy B. Miller, Ph.D., M.S.W., adapted by Laura J. Warren, Pilot Parent Family Resource Center, The Arc of the Capital Area, 1/96.