The Tough Decision to Move Our Son to a Residential Community

Kevin at the beach

My husband and I had an “Aha!” moment right before our niece’s wedding. As our niece was moving to a new chapter in her adult life, it occurred to us that we had no idea what our son’s life apart from us might look like. We always included Kevin—our 31 year-old son with cerebral palsy and a severe communication disorder—in extended family get-togethers. So, we didn’t hesitate to call for a family meeting after the wedding to talk about our thoughts and concerns for his future. My husband and I wanted to keep Kevin at home until we could no longer care for him. Both having been diagnosed with cancer—although successfully treated—we recognized the need to plan for Kevin’s future without us.

We began to search for a residential community with a secure financial base that offered Kevin a safe, homelike setting. An only child, he appreciated not sharing a bedroom. His private space is important to him. Kevin works with a job coach and has since high school. He enjoys workplace interactions, so the provision of scheduled work activities was also vital in our decision.

KevinDivingKevin loves being “on the go” and participates regularly in church services and a variety of recreational activities. We identified a community with a new church home and leisure activities in addition to all of the other criteria we expected for our son. In our small rural community, Kevin developed relationships with the same therapists and caregivers for most of his life. We realized that any change would cause issues for him, so positive interactions with caregivers remained another non-negotiable feature. Finding a facility able to maintain his level of physical strength and flexibility for walking presented another challenge. That created another requirement—access to quality health care, various therapy services and fitness programs.

Communicating with unfamiliar listeners posed his greatest challenge. Kevin uses oral speech, gestures and some idiosyncratic signs to communicate. His love of his smart phones and technology drove his increasing use of oral and written language since high school. Any time a new communication app became available, a speech-language pathologist and an occupational therapist provided treatment to help Kevin use it. Kevin learned word prediction, which greatly expanded his ability to discuss topics or clarify his comments via text. Therefore, we insisted the community we selected would need to embrace technology and facilitate his use of it.

When we found the place that met all of ours and Kevin’s needs—Innisfree Village—executive director Carolyn Ohle asked us why we wanted to wait to move Kevin. She explained that younger residents adjust more easily when family members actively support the resident through the transition. This also allows parents or caregivers to visit frequently and take their child home for vacations and holidays.

Her words made sense and, once our emotions caught up with our reasoning, we decided that moving him sooner was better for Kevin even if it was more difficult for us. Kevin has now been at Innisfree Village for almost three years. He works in the bakery, vegetable garden, community kitchen and on the farm. He receives physical therapy and exercises regularly in a fully equipped gym. Kevin especially enjoys going to the local coffee house and attending sporting events in Charlottesville. His life is rich and full.

My husband and I continue to grieve the loss of Kevin’s presence in our daily lives. But we made the right decision for his present and future, and that gives us peace.  Whatever happens to us and no matter when it does, he’s in a comfortable and caring community, which won’t change with our passing.

 

The Unexpected Empty Nest,” in Exceptional Parent’s December 2013 issue shares more about Kevin’s life and transition to Innisfree. A condensed version appears on the Innisfree Village website, which CSD students can explore for volunteer opportunities.

Ann M. Darby, MA, CCC-SLP, Kevin’s Mom, retired SLP, spent her career working in the public school system as an ASHA certified SLP, preschool special needs teacher and preschool specialist. amdarby70@gmail.com

The Road to Success in the NICU is Paved with Questions

nurses talking

When I first started in the NICU in 1985, I was excited but also concerned that I could potentially cause harm working with such fragile babies. And this was even after I already had nearly eight years of experience treating complex pediatric feeding/swallowing patients ages birth to 3.

The NICU is a different world: the medical terminology, the co-morbidities and their impact, and the fragile population. Working there, I thought of many clinical questions. Was what I saw normal feeding behavior for a preemie? A variant of normal? Immaturity? Or pathology? I started to build my knowledge base and framework for problem-solving by asking questions. I asked questions of neonatologists, nurses and respiratory therapists at every juncture. And I still do today!

So my number one tip for success in the NICU is ask questions! It paved the road for my success and will help you too.

  1. A question is like a flashlight that we shine into the darkness allowing us to move forward into the unknown and uncertain. We can organize our thinking around what we don’t know, as a guide.
  2. For various reasons, we tend to ask fewer questions as we mature. Students get graded more for their answers than their questions. Bosses get impatient when their staff ask too many questions, especially ones that challenge assumptions.
  3. Some often stop asking questions out of fear of looking foolish or appearing uninformed. Not asking often leads us down the wrong path, be it the wrong path for diagnosis or the wrong path for intervention.
  4. Advanced clinicians contemplate these two questions, repeating the cycle many times: “Why?” and “What else?” (What else do I need to consider? What else might be the etiology? What else might make a difference?)
  5. But who has time to pause and question? We’re so used to getting quick answers on Google, but clinical questions call for a different search. You may have to follow them into unfamiliar places, grapple with them and change them over time. Einstein said: “It’s not that I’m so smart, it’s just that I stay with problems longer.”

In the NICU, answers may become obsolete or insufficient over time. Only the questions endure.

If you are thinking about moving into NICU practice, feel free to comment below, email me or read my previous posts. And stay tuned for more tips to guide your journey!

 

Catherine S. Shaker, MS, CCC-SLP, BCS-S, works in acute care/inpatient pediatrics at Florida Hospital for Children in Orlando. She specializes in NICU services and has published in this practice area. She offers seminars on a variety of neonatal/pediatric swallowing/feeding topics across the country. Follow her at www.Shaker4SwallowingandFeeding.com or email her at pediatricseminars@gmail.com.

Five Tips to Help Students Review Skills Over Summer Break

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According to the website of the National Summer Learning Association, “all young people experience learning losses when they do not engage in educational activities during the summer.” I want to help support my middle-schoolers’ language skills during this time. This year, I put together a handout with suggestions on what families can do over the break:

1. Visit a Museum

  • While at the museum, go on a scavenger hunt. There are plenty of pre-made hunts online. Some scavenger hunts ask simple “wh” questions and others may require critical thinking. The best part is that the students are learning without even realizing it!
  • Ask students to come home with three facts they learned. They can take pictures (if allowed) as a reminder and/or jot down details.
  • On the way to museum, review common museum terms such as exhibit, ancient, extinct, era, discovery and more.

2. Write a journal

For students who need to work on writing skills, suggest journaling. Ask them to create a summer writing journal and decorate it. Students can write what they do day-to-day, or print a list of pre-made writing prompts. I found a sample list of writing prompts online.

3. Play language games

SLPs often collect and hoard board games that we use to reinforce target goals. Why not share some of these with parents? Common games played in my room appropriate for middle school include:

  • Apples to Apples
  • You’ve Been Sentenced
  • Trigger
  • Baffle Gab

4. Read, read, read.

I know this seems obvious, but it’s so important for kids to continue reading over the summer. In my school, we charge kids with reading every day for at least an hour. Send home a list of books that kids in your caseload may enjoy reading. Also, encourage parents to ask their kids questions about characters, problems, solutions, settings and other story details.

5. Cook

Why not try a new hobby while home for the summer? Older students can make many yummy dishes and cooking offers another fun way for parents to engage with their kids. You can find plenty of no-bake recipes online for kids who stay home alone during the day. Reading a recipe teaches following directions, comprehension and vocabulary. It’s also a pretty important life skill (in my opinion).

These are just some ideas to help your kids get going and keep busy this summer! What summer activities do you suggest for your older kids?

Gabriella Schecter, MS, CCC-SLP, is a full-time SLP working in a grade 6-12 school. She posts regularly on Instagram (@middleschoolSLP), sharing ideas and activities for this age group. Check out her blog or contact her at MiddleschoolSLP@gmail.com.

Create a Career Roadmap Using 3 Key Questions

New grads deciding on career path

Well, it’s that time of year. Students everywhere recently celebrated graduation, breathed a huge sigh of relief about finishing theses, then partied after passing comps and licensure exams. Whew! All done. Right?

Nope! Your journey as a new audiologist or speech-language pathologist begins now. How thrilling is that? You chose a field with so much opportunity. However, many grads choose the population and setting where they want to work and consider career planning done. But there’s more …

To create your career roadmap, think about these three questions:

  1. Where do you want to go? Not just: “Where do I want to go right now?” Think about where you see yourself in five or 10 years. What do you want to do down the road? Do you want to grow in a particular setting, or do you see yourself building experience then moving to a different setting? For example, you might choose to work in an outpatient private clinic to gain experience and understand more about business as a springboard to opening your own private practice.
  1. What tools do you already possess and what do you need to help build future skills? Think about this in terms of your clinical skills as well as your professional skills. Are there areas in which you’d like to grow clinically or eventually specialize? If so, how will you obtain that experience? Think about what continuing education courses you can take. Look objectively at your communication skills, emotional intelligence, leadership skills and organizational abilities, to name a few. Which areas are your strengths? Where do you need to grow? If you have trouble evaluating yourself in this way, ask someone you trust to provide you with some perspective.
  1. Who can help? Find people to mentor and guide you. Maybe choose a colleague or two in your workplace whom you admire professionally. Pick their brains about how they developed their career paths. Don’t be afraid to ask people for advice. Most experienced clinicians want to share experiences and guide new colleagues. We were once were you were—just a little longer ago! In addition, your state association and ASHA offer great avenues for connecting with others in similar settings. Get involved!

During this time, stay flexible. Things change and that’s OK. Creating a career roadmap provides a framework, but you might put the pieces together in a different order once you start building. So congratulations to you on your graduation—relish this exciting time in your life and the start of a new adventure. Enjoy the ride!

 

Suzanne Bonifert, MS, CCC-SLP, manages rehabilitation services at Cook Children’s Medical Center in Ft. Worth, Texas. She frequently mentors and helps guide new clinicians. suzanne.bonifert@cookchildrens.org

‘You are Lifting People’s Voices and Lives,’ StoryCorps Creator Tells Conference Attendees

family photos“Every life matters equally and infinitely.”

That lesson is one that Dave Isay has learned in the process of compiling more than 60,000 conversation through “StoryCorps,” the project that collects recordings of conversations between everyday people. The author, documentarian and StoryCorps founder opened the 2015 ASHA Schools Conference and Health Care Business Institute by sharing some of those stories in a joint plenary session.

The project began as a single recording booth in New York City’s Grand Central Terminal and now includes mobile audio booths that travel throughout the country and a recently launched mobile app. Millions of listeners tune in weekly to hear them on NPR’s Morning Edition.

The premise is simple: Come into the booth with someone you care about and, with the assistance of a facilitator, conduct a 40-minute interview.

What often ensues, Isay says, is a discussion centered on “If I had 40 minutes to live, what would I tell the person I love?”

storycorps
He shared recordings of an older couple, both before and after the husband was diagnosed with cancer. The story of a renowned surgeon, who reveres his late father—a janitor and chauffeur—and who says, “I hope I can be just half the man he was.” A conversation between a woman and the man who, at 16, murdered her son, about forgiveness and the deep relationship they have since forged. The actor who stutters and who concludes, “Who would I be if I didn’t stutter? I would be a completely different person.”

A man with Alzheimer’s disease is interviewed by his two daughters. “I have no regrets,” he says. “I have a family I love and they’re loving people. That’s the biggest thing you can leave.” And a daughter responds, “You created such love. We want to be around you.”

A mother who has developmental disabilities tells her interviewer—her teenage daughter—“I am thankful because you love me and understand me.” A mother asks her 10-year-old son—who at 4 asked Santa to allow his younger sister to hear—about growing up with a sister who is deaf. “Well, I get to meet a lot of hearing-impaired people I wouldn’t have gotten to know,” he responds. “And when kids make fun of her, I tell her they’re just jealous because she gets to do cool things like learn sign language and stuff.”

The recordings often evoke deep emotions, as evidenced by the number of session attendees reaching into pockets and purses for tissues.

This “collection of the wisdom of humanity,” as Isay describes it, is testament to the work of communication sciences and disorders professionals. “You work very hard,” he told the audience, “and you love your work. You are lifting people’s voices and lives. You help give them voice, love and hope.”

Speech-language pathologists are “so much about what we do at StoryCorps,” Isay said. “We shake people on the shoulder and say, ‘This is what’s important.’”

Isay concluded with a favorite quote of Mr. Rogers, the beloved children’s television host, but attributed to a Philadelphia nun: “It’s impossible not to love someone whose story you’ve heard.”

“We love you for the work you do,” Isay told the audience. “Keep loving and listening.”

Carol Polovoy is managing editor of The ASHA Leader.
cpolovoy@asha.org