Never Say ‘Never’ A clinician finds herself unexpectedly taking on two roles: speech-language pathologist and special-needs mom. First Person/Last Page
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First Person/Last Page  |   August 01, 2015
Never Say ‘Never’
Author Notes
  • Elisa Jankly, MS, CCC-SLP, lives in San Dimas, California. She has worked in schools and in skilled nursing facilities, providing services to adults with aphasia, dysphasia and dementia. helloelisa@hotmail.com
    Elisa Jankly, MS, CCC-SLP, lives in San Dimas, California. She has worked in schools and in skilled nursing facilities, providing services to adults with aphasia, dysphasia and dementia. helloelisa@hotmail.com×
Article Information
Speech, Voice & Prosodic Disorders / Voice Disorders / School-Based Settings / Language Disorders / Aphasia / Speech, Voice & Prosody / First Person/Last Page
First Person/Last Page   |   August 01, 2015
Never Say ‘Never’
The ASHA Leader, August 2015, Vol. 20, 88. doi:10.1044/leader.FPLP.20082015.88
The ASHA Leader, August 2015, Vol. 20, 88. doi:10.1044/leader.FPLP.20082015.88
All my life I have made “I will never” statements. In high school, when my friends took an anatomy class, I said, “I will never need to know anatomy! I want to be a speech-language pathologist.” I was kicking myself as I struggled through my first anatomy class in college.
I never thought I would have a child with special needs either, but I think no one ever does. I hold the official title of speech-language pathologist and unofficial title of special-needs mom—and sometimes those two titles together are a hard burden to bear.
My second daughter was born at 39 weeks after a healthy pregnancy. At birth, Bettina did not cry and almost died. She was born with bilateral vocal fold paralysis. Her vocal folds are closed, and she can’t breathe on her own. At 1 month, she received a tracheotomy and a G-tube, devastating and life-changing procedures for me and our family.

It pains me that even as a trained SLP, I don’t have all the answers. I sometimes get upset because I know I could be doing more. Every day I make a silent promise to Bettina that I will continue to try my best.

What do you say to someone in my position? I have heard it all. From “Thank goodness you are an SLP; you will teach her how to talk and eat,” to “She is in the best hands; there is no better parent for her than you.” I agree with all of it, but that does not make it any easier. Idiopathic bilateral vocal fold paralysis has no known cause and the timeline for the vocal folds to recover is unknown. I have been told she is one in a million.
More than a year later, my beautiful Bettina is happy and healthy with a trach. I have learned to embrace the special-needs mom title, but I still have a sense of sadness that I don’t know how to shake off. Bettina’s language is delayed, and she is still fed through her G-tube. The daily stress and the pressure I put on myself to fulfill both roles are tremendous.
But to be honest, some days I forget to work on her speech and language. Some days we do not work on her oral motor control that she so desperately needs. It pains me that even as a trained SLP, I don’t have all the answers. I sometimes get upset because I know I could be doing more. Every day I make a silent promise to Bettina that I will continue to try my best.
When I was working, I provided services to adults in the aphasia population. I always said I would never work with children. But with Bettina’s experience, I have decided that when I return to work, I want to work with children with special needs so I can share what I have learned with other parents. I feel so very blessed with both of my daughters and am so proud to hold the title of special-needs mom.
2 Comments
August 15, 2015
Anne Kiselewich
Speech Language Pathologist
What a beautiful moving story you have shared. Bettina is so blessed to be born in your precious family.
August 27, 2015
Annette Ellis
You are doing so much
I've made that silent promise to my children, too. I know you are doing as much as you can and more than many could. I can hear it in your words. I would argue that almost all parents feel we could be doing more, special needs or not. No matter the circumstances, I think that is what unconditional love is about. Thank you for sharing your story!
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FROM THIS ISSUE
August 2015
Volume 20, Issue 8