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Early Intervention Speech Therapy

A True Story of Acceptance

Published September 18, 2009 8:30 AM by Stephanie Bruno-Dowling
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 During those weeks of waiting, mom became more and more withdrawn.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:


I think what is important to understand we have to go though these stages of denial acceptence anger and depression we have to grieve for our daughters to a certain point you cant just say your daughter has Rett and now move on each family is unique in how they handle this devastating news. I am going on three years after three years of not being able to get a correct diagnosis its still painful you never really get over it we have to learn to live with RETT it changes who we are it changes everything about your family family turns their back its unbelievable how you life changes right before your eyes. I love my daughter and would not change anything but this is a lifetime issue for her for us.Without Jesus Christ I wouldnt have any hope. He is my hope...

Vickie September 24, 2009 10:36 AM
Littleton CO

Thank you so much for sharing your information - I will pass it along to this mom! I am also going to check it out for myself...Thank you!

stephanie bruno dowling, blog author September 21, 2009 8:39 PM

I think this mom should get involved with the Rett Syndrome Research Trust which will give her the confidence that much research is being done currently, and that treatment for Rett is maybe as close as five years. However, a complete cure will be further away. Nevertheless, a lot of stuff is happening these days. Rett is in line to be the first reversible brain disorder, and the discovery will lead to many other successes. Just wait and let's accept the facts. As Rett parents, I get choked up as well from time to time, but keep the faith alive. Something will happen soon.

Steffen, Financial Services - Vice President September 21, 2009 11:07 AM
Washington DC

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About this Blog

    Stephanie Bruno Dowling, M.S. CCC-SLP
    Occupation: Speech-Language Pathologist
    Setting: Early Intervention in Delaware County, PA
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