A True Story of Acceptance
Last December I was assigned a new child to my caseload. She was already being seen by several of my co-workers who each informed me of their grave concerns regarding her development. At the time, she had not yet been diagnosed with anything other than a developmental delay; however two of my seasoned staff members confided that they were concerned it was Rett syndrome due to the symptoms she was exhibiting.
When I first visited the home and met mom, she was very hopeful about her daughter. She knew she was delayed; however she was confident that she would one day walk, talk and do all the things her other children could do.
Over the next few months, I began to see mom's behavior and disposition change. She no longer seemed as hopeful and decided to take her daughter for genetic testing to try to get some answers. During those weeks of waiting, mom became more and more withdrawn. She was rarely in our sessions (often grandma was instead) and when she was present she seemed increasingly uninterested in therapy. Mom confided that she "is really hoping it's nothing too serious" but also shared that she was researching several disorders on the internet. Looking back, I now see that she was quite appropriately in the third phase of acceptance: Bargaining.
Then, in mid-spring, the dreaded diagnosis came: Rett syndrome. It was during this time, that mom promptly tumbled into the fourth phase: Depression. Over the next several weeks, I saw mom become increasingly sad and she cried during several of our sessions. She seemed very uninterested during therapy and shared that she wasn't sleeping much. Week after week, she looked tired, lethargic and overwhelmed.
Looking back over the last 10 months since our therapy began, I've watched this mom transform from one phase of acceptance to the next. As a team, my coworkers and I have supported her through the process by asking questions and providing educational literature and information about the syndrome. Acceptance was never forced, but quietly encouraged.
In the last month, a change has occurred. Mom has decided to use her personal medical insurance to pursue some private therapy for her daughter. She is taking a more proactive role in her development and growth. She seems open to suggestions for useful therapy ideas, but is also realistic about her child's current level of functioning and how much she can handle at this stage in the process. Mom is increasingly talkative and inquisitive and our sessions have become more interactive and productive as we problem-solve together. Mom got to this phase on her own and it is important to note that it really began when her daughter was only a few months old and took until now - she will be three in December.
For additional information, the following resources are two websites that offer more detailed information about Elizabeth Kübler-Ross and her Five Stages of Acceptance:
http://www.ekrfoundation.org/index.html
http://www.businessballs.com/elisabeth_kubler_ross_five_stages_of_grief.htm