Trading Places An SLP sees disability and treatment through a whole new lens From My Perspective
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From My Perspective  |   January 01, 2012
Trading Places
Author Notes
  • Renena Joy, MS, S-LP (C), is a speech-language pathologist working as an autism specialist in Halifax, Nova Scotia public schools. Certified by the Canadian Association of Speech-Language Pathologists and Audiologists, she has worked in a variety of settings, including family resource centers, child care centers, and schools. She is the past president of the Speech and Hearing Association of Nova Scotia. Contact her at renenajoy@eastlink.ca.
    Renena Joy, MS, S-LP (C), is a speech-language pathologist working as an autism specialist in Halifax, Nova Scotia public schools. Certified by the Canadian Association of Speech-Language Pathologists and Audiologists, she has worked in a variety of settings, including family resource centers, child care centers, and schools. She is the past president of the Speech and Hearing Association of Nova Scotia. Contact her at renenajoy@eastlink.ca.×
Article Information
Speech, Voice & Prosodic Disorders / Hearing Disorders / Audiologic / Aural Rehabilitation / Swallowing, Dysphagia & Feeding Disorders / Special Populations / Genetic & Congenital Disorders / Healthcare Settings / Attention, Memory & Executive Functions / From My Perspective
From My Perspective   |   January 01, 2012
Trading Places
The ASHA Leader, January 2012, Vol. 17, 30-31. doi:10.1044/leader.FMP.17012012.30
The ASHA Leader, January 2012, Vol. 17, 30-31. doi:10.1044/leader.FMP.17012012.30
Renena Joy with her husband, Shawn, and daughters Mackenzie, 7, and Lexi, 4.
Female, 6 years; 10 months. Chromosomal abnormality: translocation 9;15, microdeletion 9. Repaired cleft palate. Previous history of hypoglycemia, gastroesphogeal reflux, and tachycardia. Delayed developmental milestones. History of recurrent ear infections with subsequent placement of bilateral myringotomy tubes. Receptive and expressive language broadly within normal limits. Mild to moderate hypernasal speech with nasal emission. Reduced speech intelligibility. Most recent psychoeducational assessment revealed low-average verbal comprehension index and borderline visual-perceptual scores. Recently diagnosed ADHD (combined type).
Professionals who have been or are involved include genetics, neonatology, endocrinology, cardiology, ophthalmology, otolaryngology, orthodontistry, dentistry, oromaxillofacial surgery, speech-language pathology, audiology, developmental pediatrics, occupational therapy, physiotherapy, psychology, and psychiatry.
Does this profile look familiar? How often have you read files and/or summarized case histories for a speech-language pathology or audiology file? Many files have shuffled across my desk with profiles similar to this one.
Now consider for one moment how the parents of the child outlined in this profile would describe her. Parents have a perspective like no other. The parents of this little girl, when asked to describe their daughter say, “She’s so very happy, pleasant, kind, caring, energetic, sweet, delightful, and engaging. She is social, excitable, funny, beautiful, friendly and loving. She lights up a room and warms your heart.”
I know how very true this is, because this child is my daughter. I am her mom.
It’s interesting how life happens. I often wonder if I became a speech-language pathologist because there was some master plan that this child would come into my life. It seems as each step of my life has prepared me in some way for the new journey that I’m on as a parent of a child who has special needs.
In November 2004, my beautiful Mackenzie arrived into my life. I vividly remember every significant moment and detail of the birth, delivery, and the first few weeks. The beginning was touch and go and often plagued with uncertainty as to what our future may hold.
Immediately after she was delivered, Mackenzie was whisked away by the neonatal team. She didn’t make a sound and was in significant respiratory distress. We spent the next 16 days in the neonatal intensive care unit. The doctors were unsure of what exactly was wrong and we were dealing with many problems.
Mackenzie’s blood sugars were very difficult to stabilize. It was challenging to find IV sites to deliver the fluids that would maintain her sugar levels. She had IVs inserted into every part of her body—hands, feet, legs, head. One of the nurses discovered Mackenzie had a soft palate cleft that made it difficult for her to suck, and as such breastfeeding was not possible.
Mackenzie’s health challenges continued after discharge from the hospital. We made frequent trips to our family physician and many other medical professionals. We were taking Mackenzie’s blood every three to four hours to test her blood sugar and following a strict feeding schedule that began at 4 a.m. and cycled every two hours until midnight. Often it would take Mackenzie an hour to drink one ounce of milk. Sleep was rare and my husband and I were exhausted.
I remember experiencing a lot of intense feelings. I was angry because this wasn’t the way I had planned things. I was upset that my baby had to experience such hurt and pain and that things were just so hard. I was sad that my husband and I were robbed of what I thought was supposed to be this beautiful and amazing experience. I was worried. I felt helpless. It was as if my life was spiraling out of control.
As Mackenzie grew and developed, the usual milestones—sitting, walking, talking—were late. We were continually presented with new health issues to overcome and spent our first year at doctors’ appointments, solving and dealing with one issue after another.
Each situation is etched in my memory, stored and filed. I remember receiving each diagnosis. I remember hanging on every professional’s word, listening for anything that would give us hope and the strength to move forward. I left each of those appointments overwhelmed by the uncertainty of what it all meant.
I’ve filled every role…doctor, nurse, physical and occupational therapist, SLP. After every specialist appointment, there would be recommendations to implement. I would try to incorporate them into our routines. Sometimes that would be easy and other times, not so much. My intentions were always real; however, depending on what we were dealing with at the time (i.e., significant medical concerns), sometimes I couldn’t follow through. It took me a long time to realize that I didn’t have to be—and couldn’t be—everything. At the end of the day, my most important job was to be Mackenzie’s mom.
I wonder what it might be like if I didn’t have my education and expertise. It’s been a blessing in many ways and also a curse. Knowledge sometimes is half the battle and has allowed me to be a strong advocate for my daughter, but it also fills me with worry and uncertainty. I feel lucky and blessed that I have so much to offer her because of what I know.
The journey has been filled with challenges and triumphs. I’ve watched my child be poked and prodded and experience pain and discomfort. I’ve watched my child walk off to the operating room with a physician as I go to a waiting room, praying that everything will be okay and anticipating the phone call that the surgery is complete.
I’ve hugged my beautiful daughter after surgery, tears rolling down my cheeks because I’m so grateful to have her back in my arms. I’ve seen the disappointment on a physician telling my husband and me that a surgical procedure wasn’t successful. I’ve given my child medications that change her behavior and personality and wondered how I can possibly continue to experiment using my own child as the guinea pig. I’ve spent nights awake wondering what lies ahead. I’ve shed many tears thinking about how far we’ve come and where we may be headed. I’ve experienced the joy of celebrating each little step and accomplishment—sitting, standing, walking, first signs, first words.
Has being on this side of the table as a parent of a child who has special needs changed my own professional practice? Definitely. I listen more intently and with more heart to what parents are truly saying. I consider the significance of what I might have to offer and whether it is meaningful to the child and his or her family. It is important to recognize that each family is different, individual, and unique. Each family brings its own dynamics—each child’s special need is different, family structures vary, relationships within families differ, families have different levels of support available.
I consider these points very seriously in my own clinical practice. Sometimes parents aren’t looking for us to add anything extra—sometimes it’s just as or more important that we just listen. It’s not always about providing answers, solutions, or recommendations. Respect each family and what it brings from the other side of the table. Meet them where they are in their own personal journey. Listen and empower them to continue to move forward.
Mackenzie just turned 7. On the morning of her birthday she asked: “Mom, what day is it today?”
I said, “It’s Friday.”
To which she replied very, very excitedly, “No, Mom, it’s MY birthday!”
Indeed it was! I, too, celebrate that day, not just because it was the day my life became richer but because it’s a day to reflect on where we started and where we have come. When I look at her smiling face and watch her experience so much joy and happiness, I think to myself that all I really want for her is that she is happy!
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January 2012
Volume 17, Issue 1