Click To Play
Brought To You By:
This week on TWT, we share the second half of Rachel’s interview with Carly Stoltenberg! Carly is an SLP who was diagnosed with Guillain-Barré Syndrome (GBS) two years ago. At one point in her recovery, Carly was paralyzed and unable to speak. In the second half of the episode, Carly shares what she has learned about valuing the uniqueness of each person in our care, and why honesty about her struggles with GBS has led to greater, more meaningful connections with others!
Key ideas this episode:
🔑There are many ways to acquire AAC, and successful implementation doesn’t always require the involvement of an “AAC expert.”
🔑The “wrong” AAC is often better than no AAC at all.
🔑We should respect the differences in each patient, because there no “one size fits all” when it comes to a person’s treatment and care.
Before the Interview:
- Rachel’s camping trip hiking down the Grand Canyon.
- Chris presenting about AAC at a conference in Connecticut for students with Autism. Expects there was more family at the conference than clinicians and speech therapists. Parents are a great audience.
- Cathy Binger – New Mexico professor – IMPAACT model, developer of RAAP (read, ask, answer, prompt) who wrote an article about families’ need for guidance before buying a communication app for a person with autism. Author was concerned that parents get apps marketed to them and they are not always given the best information.
- Rachel & Chris had concerns that this article may encourage the idea that AAC always requires an expert to do an assessment and make a recommendation. The expert model is not the only model for acquisition of an AAC app (e.g., a specific learning system approach). The article also appeared to bother some parents because they don’t believe a parent should have to go through an expert.
- We need collaboration, especially from parents of kids with CCN. Guidance from a person with AAC experience is important, but parents don’t always have access to experienced clinicians
- “The wrong AAC may be better than no AAC” One system may have better features than another, but getting an AAC user started on any robust language system may be more helpful than no AAC at all. Fear of making the wrong decision can stop inexperienced clinicians and parents from ever getting started. It is better to encourage people to go learn about AAC from quality sources of information.
- Parents often tell Chris, “I went to someone who said they were an expert, and that person was giving me bad advice”
- One size doesn’t fit all for acquiring AAC, there are many avenues to success.
- There are myths about best practices in AAC, and some “experts” are limiting the potential of children. If we say people must go to an “expert” that may stop parents from moving beyond bad advice.
- Using a framework for the decision making process that involves a collaborative approach with the team, such as the SETT framework (student, environment, task, & tools) is better than asking an “AAC expert” to make every decision.
- Author mentions that it isn’t a quick fix – Chris agrees and points out its more like building a house where there is a team of people putting it together, it takes a long time, and the work is never done.
- Author’s article is valuable from a professional perspective and raises good points (eg., some parents, without guidance, may buy AAC apps that aren’t a good fit), but it could do more to recognize the challenges for families in getting the help of an experienced AAC clinician.
- Asking parents to seek out guidance from an AAC expert may no longer be “best” practice but one of several good choices for acquiring AAC.
During the Interview:
- Parents know their child more than any therapist.
These are the lives are these families – their goals and what they want to see happen.
- Patients know their body best.
- Every patient comes in with a unique perspective, and we can’t assume we know more than anyone else because each case is different, especially with GBS.
- Carly has always had her own list of personal goals, not just those given to her, such as wearing high heels and driving a car.
- Importance of reaching out to others on Facebook and social media about GBS so people don’t feel like they are the only person dealing with GBS.
- You have to be real about your struggles, it helps people feel more connected with you.
- Importance of human touch was felt by Carly when she went 3 months without getting a hug while in a wheelchair.
- Not being at eye level made her feel invisible. Treating people like normal people is so important.
- Giving people love can be even more important than meeting a speech and language goal.
- Make sure you understand that what you are saying about a patient can have an impact down the road. Carly’s insurance claim was denied because someone made a note in her file incorrectly stating she wasn’t a candidate for acute rehabilitation.
- One of Carly’s top words when using her own AAC was “sad”. Clinicians don’t always think about teaching emotions because they are too abstract. However, should afford everyone the opportunity to be understood.
- Everyone has emotions, and we should incorporate emotion words as early as possible to give AAC users a chance to communicate about their feelings.
- What would Carly’s billboard say? Everyone is different and there is no “one size fits all” when it comes to a person’s treatment and care.
- Links:“Families need guidance before buying a communication app for autism” by Cathy Binger
AAC Agreements: bit.ly/aacagreements
Top 5 Parent-Friendly TWT Podcast Episodes: https://www.rachelmadel.com/blog/nonverbal-autism-resources-top-5-parent-friendly-podcast-episodes
Carly Stoltenberg: Behind the Ventilator: An SLP finds her voice as a patient with Guillain Barré syndrome. https://leader.pubs.asha.org/doi/10.1044/leader.FPLP.23092018.72
GBS Carly Recovering Like a Champ, and Looking Good Doing it! Facebook Group https://www.facebook.com/groups/1057840921027306/
Interested in earning CEU’s by listening to “Talking With Tech”? Check out our course at bit.ly/twtcorepd.
Hosts: Rachel Madel and Chris Bugaj
Producer: Luke Padgett
Audio Editing: Michaela Ball
Music: “Ebb and Flow” by Fabian Measures