By: Deb Tomarakos, SLP-CCC

Reprinted with the express permission of the author as it originally appeared on her blog Speech Gadget, April 23, 2012
Through this blog, I have shared a bit about my kids but I haven’t gone into too much detail because I was always on the fence about how much was too much to share.  Due to some recent frustrating experiences as a parent of children with special needs, I felt compelled to share more of our family’s personal story. I still have reservations about public sharing and I wonder if one day my children will be angry with me for sharing too much. That said, I think that sharing some of our experiences can be helpful to other parents and to SLPs.
When my daughter was about 15 months old, I thought she probably had CAS.  Around that time, I scheduled an appointment at the clinic where I was working for a full speech/language eval.  One of my co-workers completed the assessment and agreed that she saw red flags for CAS. Of course, due to my daughter’s young age, my co-worker did not officially diagnose CAS.  So, with a diagnosis of “other speech deficit” and an “expressive language delay,” we went forward into therapy 2 times per week for 30 minutes at the center.  I also went forward trying to devour all the info on CAS that I could find.
CAS is a difficult diagnosis because it is not extremely common and because there is some research to suggest that CAS has been over diagnosed.  In graduate school, most of us are taught about CAS as a disorder, but few of us get hands on practical experience in the diagnosis and treatment of CAS.  This became apparent to me as I was observing one of my daughter’s speech sessions a couple of years ago.  My co-worker and one of our clinic’s graduate student interns were in the session. A little bit into the session, the grad student noticed that my daughter’s spontaneous speech was rather unintelligible and that her speech pattern consisted of accurate vowel productions with rather accurate intonation patterns. This speech pattern, while not extremely intelligible to an unfamiliar listener, was progress for us as we had already spent months focusing on maintaining intonation patterns and improving vowels within various syllable shapes.  Much to my dismay, the student intern, said something along the lines of, “wow, she has the most bizarre speech I have ever heard.”  My internal dialog as mom was, “You idiotic student do you realize that you just insulted me and my baby girl?”  My internal dialog as a SLP was, “Wow, she probably has never heard the speech of a child with CAS or the speech of a child with a severe phonological deficit.”
I walked away from that session with the student intern having learned 2 lessons.  Lesson number 1 was that we really needed to talk to our interns about watching what they say when parents are observing.  Lesson number 2 was that our grad students probably hadn’t seen many, if any, children with CAS prior to their internships with us. As a mom, it was disheartening to realize that our future Speech-Language Pathologists are leaving graduate programs without the experiences they need to help children like my daughter.
Fortunately for us, I worked with wonderful SLPs who had experience with CAS.  We were are able to set up a therapy plan that allowed for progress.  That is  not to say there was quick progress. Therapy progress was slow and at times painfully slow. We took steps forward and steps back.  There were times when I thought both my daughter and I could recite the list of words in the Kaufman Card Kit in our sleep. I took it upon myself to find ways to keep her engaged and moving forward.  When progress was slow, I spent hours searching the Internet for more answers and more suggestions.  I spent hours making photocopies and printing out PECS cards and other picture cards.  I made photo books with pictures of our family and my daughter’s favorite things so we could read and practice the names and words that were important to her. I bought pre-made articulation and CAS cards and books with words we were targeting.  We even had a trial period of supplementing with fish oils.
As I parented a child with CAS, I learned that when there aren’t clear answers, parents will move mountains to search for answers.  Parents will search libraries and the Internet. They will seek out expert professionals and they will start support organizations.  CASANA was started by one such parent of a child with CAS.  As a professional, it is also your responsibility to seek out answers.  If you are faced with treating a child with CAS and you are not experienced with the diagnosis, please seek out information, continuing education or a mentor who is experienced with CAS.  If you are unable to provide quality therapy, then refer the family to a SLP with experience in treating CAS.
Parenting a child with special needs in not easy. Being in the field and parenting a child with special needs has its own challenges and its own rewards.  I once met a parent of a child with CAS who told me, “God knew what he was doing when he made you her parent.”  She was referring to the fact that as a professional I should be better equipped to help my child.  I can say that there are definitely days when I felt better equipped and days when I felt I was drowning. Sometimes, especially in the early days of her diagnosis, I wished that I didn’t know all the long term difficulties that could accompany a diagnosis of CAS.  At times I was wishing for an “ignorance is bliss moment.” In the end, I knew that I was able to use my skills to make life easier for my daughter despite my fears that came from “knowing too much.”
We have come a long way from my initial fears and concerns when my daughter was an infant and toddler.  My daughter is a thriving pre-schooler who now receives speech just one time per week at her preschool.  Right now we are taking a break from private therapy.  We continue to have our “at home speech sessions” and I doubt that those will ever stop.  An ongoing concern is that she is not always intelligible with her peers and that has led to some difficulty with making friends. We are working through these issues with the help of her pre-school teacher and SLP. One of my greatest fears has recently been eased as she is learning to read.  Despite my fear that her CAS would be accompanied by reading struggles, she seems to be progressing well.  I am pleased with her phonemic awareness, her knowledge of sight words and her early decoding skills.  I now spend fewer nights worrying that her CAS will cause long term struggles when she is old enough to go to school.
At the risk of repeating myself, parenting a child with special needs has challenges, but the rewards are vast.  I have seen there is truth to all the sayings that remind us how hard work pays off, that challenges make you strong, and that life’s lows make the highs so much sweeter.  A couple of weeks ago, my daughter’s preschool performed a play for all the parents. As I sat in the front row and listened to her speak her lines, I felt the same sense of pride as all of the other parents in that room.  I also felt a much deeper sense of pride at how far she had come to be able to clearly speak these two lines: “Can I come in?”  “There’s always room for one more.”  They were short lines, but they carried a strong punch for a mom who had wondered if her child would ever be able to speak in complete sentences.  And so one of life’s little moments, a pre-schoolers’ play, became larger than life.  My love and my pride was bursting at the seems that day.  I thought my smile would explode off my face.  Oh yes, parenting a child with CAS has it’s challenges but when given a moment of accomplishment the reward is so much sweeter. So we move forward and meet our challenges head on and we wait for those moments of accomplishment because when it comes to accomplishments, “There’s always room for one more.”

That’s all from me for today.  I  know this post was a bit lengthier than most of my posts and if you read this far, I appreciate your willingness to listen to my story. 
 
Featured Guest Blogger:  Deb Tomarakos, SLP-CCC
Deb Tomarakos is an ASHA certified and licensed speech-language pathologist. She has been practicing in the field of pediatrics for over 15 years. Her work experience has included both the public schools and out patient pediatrics. Her strongest areas of interests include Childhood Apraxia of Speech, early reading skills, and using technology to increase children’s speech/language skills.
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