5 Jun 2018 — SpeakUp Editor
Today we are pleased to welcome Rebecca Sobolevsky to share her firsthand perspective about how becoming a parent to a child using AAC has changed her practice as a speech-language pathologist (SLP).
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As a young speech-language pathologist (SLP) working with children with complex medical challenges in early intervention, I worked with many incredible families.
I was often called to join the team later than I should have been. I dreamed of developing optimal conditions for
communication for these children from infancy – switches set up from birth
in their cribs with access to a variety of accessible toys and modeling of aided language at a very young age.
When I finally became a parent to premature triplets, one with significant medical challenges, I no longer dreamt of the optimal setup. I focused on trying to feed my children and their change diapers. I walked and rocked my son with cerebral palsy all hours of the night. I worried about reflux and seizures and a plethora of doctor appointments and new diagnoses that seemed to come all the time – epilepsy; cortical vision impairment (CVI); hearing impairment; etc. Making it through doctor appointments, planning surgeries and having energy to get through the day were my primary concerns.
Life settled down a bit and we had our first AAC assessment at 18 months. I was mom and I counted on my professional SLP friends to be the therapists. We started with a Tech Talk and moved onto a dynamic device by the time he was 2 1/2. I decided to be super mom. I modeled for my son all the time, something that was much easier when we had a dynamic device with more language. I felt solely responsible for my son’s communication and tirelessly used his device and provided partner-augmented input (PAI).
When my son was three and demonstrating some behaviors, we called in a therapist skilled in Applied Behavior Analysis (ABA). She observed our family dynamic and after an hour of observation she asked if what she observed was typical. I was unsure what she meant. She explained every time my son communicated with his communication device I stopped whatever I was doing, responded, expanded and continued our conversation. I did this even if my other children were communicating with me or I was engaged in another activity. She explained that the control he had to completely take over all of my attention for an extended period of time was not okay and that there had to be another way to support his communication.
She was right. She taught me that I did not need to be super mom to only one child. I had two other children who needed my attention as well. I was reluctant to give up the role, but she taught me a valuable lesson. I knew I needed to immerse my child in language, but it did not have to be and should not only be me. It was the best thing that ever happened to our family. I taught his siblings, my husband, our family, friends and everyone else who came into contact with our son how to model on his AAC system. My son did not need one communication partner. He needed and deserved a community of communication partners. What a relief it was to have others communicate with him and provide models for him during the day.
My experience as a parent of a child with complex communication needs has helped me understand the families I work with so much more. I recently was called in for an AAC evaluation for a two-year-old with multiple disabilities and medical conditions, and a mom who is struggling to manage her needs. As we discussed device options, mom honestly explained that it was not something the family was ready for at this time. Before becoming a mother myself, I probably would have spent a long time explaining the benefits of the speech generating device. Instead, I explained my rationale but respected the mom’s input, and the team decided to trial a system that was less complex. In order for an AAC system to be implemented it has to be a team decision that the team and family supports. Otherwise, it will be abandoned and considered a failure when in fact the team may not have been ready, not necessarily the child.
Becoming a mother to a child with complex communication needs has affected my practice in many ways. It has underscored fact that people who use AAC systems may utilize a variety of communication modes with different people and in different environments and that’s okay. My son and I can have a conversation with his sign and verbal approximations quickly and easily but others would never understand. Through respecting and reflecting (Senner & Baud, 2016), we’ve taught him how to communicate those things on his device for others who don’t know his gestures, but the method he chooses to communicate with at home is up to him (i.e., when he communicates something through another modality, we respect or honor the communication but then reflect or model a word or phrase to communicate the same idea or feeling without making him repeat himself).
It has taught me how important it is to have the whole team trained. And by training I don’t just mean how to program a symbol or back up a system. Training in PAI has been crucial for my son since preschool. We recently moved across the country to a new district late in the summer. Unfortunately, training wasn’t discussed and planned prior to the beginning of the school year. As a new 7th grade student and only device user in a middle school of over 1,000 students how comfortable do you think he felt using his system without anyone knowing his language? His sister didn’t even feel comfortable not blending in and wearing the same shoes every other 7th grader appeared to be wearing. It was a while until my son began communicating at school and it happened when his team and his new friends were willing to learn how to use his system.
Most of all, it’s taught me to meet parents, school teams and other providers where they are. I love meeting a new team member who tells me “I really don’t know much about that but I would love to learn more.” We are all at different stages in our journey and I have learned that there is so much value to being a team member who truly listens and respects the other members of the team and family’s input.
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References:
Senner, J. E. & Baud, M. R. (2016). The use of an 8-Step instructional model to train school staff in partner-augmented input. Communication Disorders Quarterly. DOI:10.1177/1525740116651251
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Rebecca Sobolevsky is a pediatric speech-language pathologist and owner of Team Speech in Denver, CO. Rebecca has worked with children with complex communication needs for twenty years in the schools, early intervention and in her private practice. Rebecca is a frequent presenter, PODD certified trainer and proud mom to triplet thirteen year-olds.
Ms. Sobolevsky has no relevant financial or nonfinancial relationships to disclose.
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Jill E Senner, PhD, CCC-SLP
SpeakUP
Editor-in-Chief