Parents have Special Needs, too!

150812161635-stressed-parents-stock-super-teaseIn my 25+ year career as an SLP, I have worked with a wide variety of students with a wide variety of special needs:  vision and hearing impairments, physical disabilities, cognitive disabilities, degenerative diseases, autism, and lots of different syndromes.  I’ve also gotten to know many of their parents, and find that they are as varied as the children and their disabilities.  In my last post, I wrote about how we can often learn and grow as professionals when pushed by challenging (aka “difficult”) parents.  Granted, that can sometimes take a tremendous amount of self-control and willingness to embrace other points of view, even when expressed in a less than pleasant (aka “hostile”) manner.  And that brings us to today’s musings:  why are some parents so challenging? Why can’t they just be nice and cooperative and supportive?  Well, when we take a little time to find out what life is like for these children and their parents, the picture becomes a little clearer.

I must say from the outset that I have met many parents who are absolutely wonderful.  They are cheerful, supportive, appreciative — strong advocates for their children, but always in a pleasant, cooperative way that engages all team members and addresses any issues with a positive attitude.  I have been in awe of the way some parents handle what has to be a stress-filled life with amazing grace and fortitude.  I’ll never forget the mother of a young boy who was born with multiple disabilities and who fought multiple medical battles in his young life.  He was in our program for four or five years, so we got to know the family well.  When he passed away, the mother came to school to make sure WE were okay. She went on to start a foundation in her son’s memory that raises money for modifying bedrooms and bathrooms for other parents who have children with severe disabilities, and that foundation is still going nearly 20 years later.  Another parent of two sons with autism came to every meeting with a box of donuts and a smile.  “Tell me something good,” she’d say, “and then we’ll get into the rest of it.”  I loved this proactive attitude and found that it made the team look for the good when dealing with her sons.

I’ve also known a number of “challenging” parents, parents who are angry, belligerent, depressed, and otherwise stressed to the max.  Rather than becoming resentful or defensive, let’s look at where they are coming from.

  • Some parents are stressed financially.  Having a child with significant needs can be expensive: diapers, surgeries, medications, adaptive equipment, outside therapies, and nursing services are just some of costs facing these parents, above and beyond the usual food, clothing, toys, and childcare.  But, you are thinking, insurance should pay for many of these expenses.  That brings us to the next stressor.
  • Some parents are stressed by insurance.  Whether private insurance through an employer or a policy funded by Medicare/Medicaid, dealing with insurance companies for even the smallest claims can blow your mind.  As an assistive tech consultant, I’ve been engaged in epic, year-long battles with insurance companies on behalf of my students, and I can tell you that my own life was severely impacted by the struggle.  When parents have to fight insurance for every little thing their child needs, they are in no mood to be denied anything at school.  Constant struggles can put some parents in battle mode all the time, causing them to come off as more aggressive than you might feel is warranted.
  • Some parents are stressed in their relationships.  It is not uncommon for marital issues to arise when dealing with the special needs of a child. Those needs may severely impact time and opportunity for the attention and activities typically shared by couples. The needs of other children in the family may suffer, and that can have far-reaching ramifications.  Friends often disappear and extended family members may be less than understanding, leaving the parents without a social life or safety net of support.
  • Some parents are stressed by employment.  In many cases, both parents of a child with special needs have to work.  It can put a strain on the workplace when parents have to miss work for IEP meetings, doctor appointments, and the child’s illnesses.  Employers may not be tolerant of this, and parents are acutely aware that losing a job means losing a paycheck and insurance, which takes us back to the first two stressors mentioned.   I’ve known couples who have decided that one parent, typically the mother, will give up employment and stay home so she is available 24/7 for the child with disabilities.  Besides taking a hit financially, this can take an emotional toll on the parent who has to give up the rewards and fulfillment of a career.
  • Some parents are stressed by a life that is far different from what they expected.  I’ve known parents for whom medical emergencies are the norm;  one couple had two children with a very rare syndrome that left them virtually locked-in, and each required a nurse to be with them 24/7.  Imagine sharing your home with a succession of strangers, night and day, and living with equipment buzzing and alarms beeping at all hours.  Another family had a child who was so destructive that furniture was bolted to the floor, the TV was hung near the ceiling, and every room was locked.  This was not a house to which one would ever invite guests.  The majority of parents have a lot to learn about their child’s disabilities and all that is involved with navigating the day-to-day needs, as well as planning for the future, but they may not have access to the supports they need to get through this.  Being a new parent can be overwhelming.  Imagine being a new parent AND having to deal with serious medical issues.

I try to keep all of this in mind when dealing with all parents, especially those who come off as “difficult.”  Years ago, I cross-stitched the saying, “Be kind, for everyone you meet is fighting a hard battle.”  This serves as a daily reminder that we never fully know what another person is dealing with, what burdens they are carrying, and how that stress is affecting them.  For a more personal perspective on this topic, I encourage you to read these excellent articles, written by parents of children who have special needs.  They can tell you, far better than I can, what they wished people knew about their lives.

37 Things Special Needs Parents Want You to Know

12 Things You Should Know About Special Needs Parents

Finally, here’s an article about understanding parent concerns and providing supports; but it applies to SLPs and other educators as well:  Understanding the Concerns of Parents of Students with Disabilities.

Sticks and Stones

Screen Shot 2018-11-10 at 9.45.31 AM“Sticks and stones may break my bones, but words will never hurt me.”  Baloney!  As experts in the field of communication, we all know the powerful effect — positive and negative — that words can have.  In fact, bullying (verbal and written) is a leading cause of depression and suicide.  Clearly, words hurt, but they can help, too.  One of the best unintended perks to come out of creating Speaking of has been the personal connections that have formed with SLPs all over the world.  There have been times (especially the two times when I had to recreate the entire site from scratch — ugh, the memory still makes me shudder) that I’ve been tempted to pull the plug on the website.  After all, the costs in time, energy, and money to keep it going for nearly 20 years add up, and I start to wonder if the site is really worth the effort.  Without fail, I’ll get an email out of the blue from a faithful follower or someone who is new to the site, telling me just how much the site has enhanced their practice and benefited their students.  Or the emails will be a personal response to something I’ve shared about my life in my newsletter.  Those words of encouragement, gratitude, and personal connection touch me deeply, and I can honestly say that this positive feedback is the reason the site still exists.  Words are that powerful.

I recently received a message from Jeanne Kleinman Williams, M.A.CCC- SLP about the power of words, and that inspired this post.  Jeanne is a long-time follower of Speaking of, and, although we’ve never met, she has become a dear friend through emails, messages, and Facebook posts — a relationship forged solely by the power of words.  Jeanne has acquired much wisdom and experience in her 44-year career.  Her message to me, in part, was this:  “I am committed to making children feel safe, cared for, and nurtured. It is my responsibility to establish guidelines that help them to develop confidence in themselves, respect for themselves, and to be their advocate. If along the way I also help close that achievement gap, I’ve made a real difference. We are the ones who love the children who come to school with dirty clothes, mismatched socks, who look a little bit different from others, may act a little different, and definitely have communication deficits. When you can make a middle school student feel like they are a winner, it makes me emotional. It’s all in the little nuances of how and what we say to the children, the students. When they walk out with their head held a little higher, then I, a down-to-earth woman, will advocate to the end of time, for my students. I think this is to make a point that it takes little, small words sprinkled with kindness and compassion, to make others feel like a winner.”

Jeanne makes an excellent point:  “the little nuances of how and what we say” are so critical to relationships, not only with our students, but also with their teachers, peers, and even family members, and can have influence far beyond the moment.  I’d like to believe that, as caring SLPs, we are always supportive and encouraging to our students, and that all of our students leave therapy sessions with a good feeling about themselves.  After all, “establish rapport” is the first lesson in Speech 101.  So let’s go with that assumption and think instead about the words of others and how they impact our students.  Are we doing enough to protect our students from unkind comments and even bullying related to their speech/language disorder?  Here are some eye-opening experiences I’ve had that touch on this question.

I was once pulled from my assistive tech assignment to be a short-term sub for an SLP who was out on medical leave.  When I walked into one of the special education classes, the teacher introduced me to the students and said of one girl, “this one doesn’t talk at all.  She can but she refuses to.  Come on, Susie, say something to the speech teacher.”  I don’t know whose expression was more horrified, mine or Susie’s.  This 8 year-old girl was a selective mute, and I quickly discovered that everyone in the school — specialists, the school secretary, the recess aids, and even the principal — badgered this child every day, “come on, you can talk, say something!”  Clearly, nothing had been done to educate the staff about selective mutism and to make them aware that their words were only making the situation worse.  I’d like to think the inservicing I immediately did made a difference for that little girl, but I left that position after a month and didn’t have the opportunity to follow up with the SLP, except to let her know what I had observed and what I did to help her.

An elementary Life Skills teacher with years of experience suddenly had 3 students in her class who used iPads with communication apps  — a new development in AAC at that time.  She observed that the boys stayed together and didn’t interact with their regular ed peers when included in specials, recess, etc.  We took a good look at the vocabulary on the devices and realized that (1) the vocab didn’t really lend itself to age-appropriate social interactions and (2) the boys needed to be taught how to engage with their peers.  Creative juices flowed and the devices were made much more conversational.  The teacher created dialogues and word games that got the kids talking, and even elicited suggestions on topics and expressions from the regular ed peers, which immediately invested them in the AAC.  She invited each 4th grade class to visit her room for a demonstration of the AAC;  she explained how and why the boys used this technology, then had the boys answer questions from their peers.   It didn’t take long before new friendships were formed and the boys were viewed by their peers (and other staff) in an entirely different light.  Again, the power of words — the words the boys used on their speech-generating devices, the words the teacher used to educate their peers.

I was recently assigned to a new school and held my first preschool transition IEP with parents and a wonderful kindergarten teacher.  The incoming student had multiple articulation errors, not all of which were developmental.  I explained to the parents the nature and severity of the errors, described what the articulators needed to do to correct production, and gave examples of how I was going to cue the student to elicit those sounds.  When the parents left, the kindergarten teacher said that she learned more about speech production in that IEP meeting than she had in her 30+ years of teaching, and asked if I would please do an inservice for all K-1-2 teachers. It was clear that she gained a new respect for just how hard these speech students have to work to correct their sounds, and now felt more empowered to support them in the classroom.  I was happy to share with her a copy of my children’s book, “The Mouth With a Mind of Its Own,” which I had written several years ago to make this very point.

I could go on and on…..classroom presentations to acquaint peers with hearing aids, teaching sign language to peers of deaf students included in regular education classes, educating parents and teachers about voice disorders and speech dysfluency, creating a functional curriculum for high school students in Life Skills and Multiple Disability Support classes that built relationships about the school with peers and staff.  All exemplify the power of words to educate, enlighten, and encourage not just our students, but also the adults and peers with whom they interact.  Speaking to Jeanne’s point about how our words affect how our students feel about themselves, I was tagged on a Facebook post by the mother of a young boy who stuttered.  We had worked for a couple of years in elementary school on fluency-enhancing strategies and also on acceptance of stuttering.  Her post was a video of him in middle school giving a presentation to his class, proudly and confidently.  Her tag said “he never would have had the confidence to do this without your encouragement and instruction.”  Wow, my words made a difference in this young man’s life, and his mom’s words brought me to tears.

For a first-person account by a parent on struggles with words, read “My youngest isn’t just quiet, he has a serious speech disorder.”

Creating Communication Opportunities for Students with Complex Needs

Screen Shot 2018-09-19 at 12.34.35 PMIn August, I had the distinct (and more than slightly scary) opportunity to participate in my first podcast.  The topic was “Creating Communication Opportunities for Students with Complex Needs,” and the interviewer was Char Boshart, SLP extraordinaire and creator of Speech Dynamics , where Char shares her endless wealth of knowledge on all aspects of articulation and school-based therapy (more on her later).  The podcast was made for and will be aired at 7 PM on October 4, after which I will be live to answer your questions.  My jitters were understandable, given it was the first time I was interviewed and recorded, but I was quickly put at ease by Char, who, among many other talents, is an excellent interviewer.  I am also fortunate to call her my friend and mentor, having established a connection through workshops and the web over the years.

So, how did it go?  Well, I guess, given this was my first time, it went rather well. For one thing, all of the technology worked, so that was a huge relief!  It was weird, I must say, sitting at my dining room table with a laptop, headset, and elaborate microphone on a stand (thanks to my son, a professional musician). But we eased through all that to get to the discussion at hand:  how to get students who have significant communication impairments to communicate more.  I have done 3-day team trainings on this very topic, so you can imagine that I had to jettison a lot of information to fit into the 50-minute format.  There is so much excellent information out there regarding presuming competence, aided language input (modeling), considerations for AAC system and vocabulary selection, expanding messages using core and fringe vocabulary, and ways to measure the efficacy of an AAC system, that I figured the podcast listeners didn’t need to hear me spout more of the same.

Instead, my focus was on how to change adult behavior and intervention strategies to increase a student’s participation in and communication during daily routines.  I chose this focus because I find that adult behavior can be the #1 barrier to communication for our students with complex learning needs.  This barrier manifests itself in a number of ways:  low expectations of the student’s abilities;  a focus on what a student can’t do, rather than finding ways to enable him so he CAN do;  a lack of training with instructional assistants;  instruction that follows the traditional teacher-led agenda, rather than taking the lead from and building on the students’ interests;  a lack of routines that have a clear beginning, familiar steps, and a clear ending;  a mismatch between the adult’s spoken message and body language, facial expression, and tone of voice, and a lack of awareness of how important these nonverbal cues are to a student; characteristics of adult behavior that have the unintended consequence of creating passivity and learned helplessness (or, at times, aggression); failure to recognize behavior as communication;   and — one of the most important, in my view — inconsistent or absent use of pausing with a prompt hierarchy.  Pausing is a challenge for most adults, even well-trained SLPs, and we often do not give the students time to process, formulate a response, and then deliver that response in a way that is understood by others.  The use of a prompt hierarchy with pausing keeps adults aware of how much assistance they are providing by moving from a least-to-most progression of prompting, which, in turn, promotes an increase in student independence. As mentioned in the podcast, videotaping and then viewing the interactions of adults and students can be extremely powerful in raising awareness in adults of their interactional style.

For those adults who are resistant, for one reason or another, to a student’s use of an AAC system (yes, there are adults like that; I see them all the time, and that is a BIG barrier), I recommend an assignment I gave my graduate students when I taught in the special education departments of two colleges:  be absolutely silent for 24 hours.  You can tell people ahead of time that you will be doing this.  You can wear a tag that says “I can’t talk today.”  You can use any other means to communicate (text, paper/pencil, sign/gesture), but you cannot talk.  It’s important that the 24 hours include typical activities of daily living — work, social activities, errands in the community.  Without exception, my grad students were profoundly shocked by their own experiences and the behaviors of family, friends, colleagues, and community members during this experiment.  And, without exception, I’m sure that each of these grad students changed their perceptions as to the importance of AAC and the need to break down barriers to its use, largely through making changes in adult behavior and expectations.

Throughout the podcast, which seemed to pass by so quickly, I tried to provide real-life examples and suggested two books with a powerful message for anyone who interacts with children or adults who have severely limited expressive communication:  “My Stroke of Insight” and “Ghost Boy,” both previously mentioned in previous posts and in my post, “The Therapy Voice.”  I also touched on the importance of scripting routines to be sure that (1) communication opportunities are built into each daily routine, including transitions, and (2) that routines are done consistently, no matter which team member is involved.  Other important points I hope got through, albeit briefly:  how to move beyond choice-making to include all functions of communication and the importance of visual supports for receptive and expressive communication.

What I didn’t have time to share are some amazing resources for ways to build and expand communication in routines and how to help all team members to become more effective facilitators of expressive communication.  Below are some of the resources that I encourage you to explore and share with your team (hint: a great way to spend your next PD day!).   You’ll notice that PrAACticalAAC is referenced often — an incredible wealth of information that I’m barely touching on here!

Autism Classroom Resources:  Functions of Communication and How to Expand

Autism Teaching Strategies:  Free social skills materials

Autism Teaching Strategies:  Visual supports to build appropriate non-verbal behaviors

PrAACticalAAC:  Using Video to Teach Vocabulary

PrAACticalAAC:  Scaffolding language

PrAACticalAAC:  S’MORES and Partner-Assisted Input

PrAACticalAAC:  Be the FUN in FUNctional Communication (goals and spreadsheets)

PrAACticalAAC:  Selecting and teaching new words

PrAACticalAAC:  Creating communication opportunities for the older learner

PrAACticalAAC:  Autism and AAC:  5 Things I Wish I Had Known

PrAACticalAAC:  Supporting Reluctant Communicators

PrAACticalAAC:  Using Aided Language Input to Build Communication Opportunities (scripting)

PRC AAC Language Lab:  yearly subscription, plus free resources, Language Stages and goals for teachers and SLPs, activities for parents

Kidz Learn Language Blogspot:  games with core words, summer activities and much more

AAC Intervention Tips of the Month from Caroline Musselwhite

Saltillo’s Chat Corner:  ideas for Saltillo speech-generating devices, but that also can be used by any AAC system

Keep Talking by Call Scotland:  a 70+ page book that you can download -free! – full of ideas on how to increase communication throughout the day

News-2-You and Unique Learning System:  lots of ways to build communication around these subscription-based materials

Using Video to increase communication:


Increasing communication with peers:

Thank you for all you do to support the communication needs of our complex students!  I hope you enjoy the podcast on Oct 4 and will look forward to talking with you at its conclusion.  Please visit for more information.  Stay tuned to this blog for upcoming posts on the amazing resources offered by Char Boshart and the use of LessonPix for visual supports.

Summer Reading List

One of the best things about summer is finding time to read!  During the school year, my reading time is limited to a few minutes before falling asleep at night.  But in the summer, busy though I am with lots of chores and activities, I still make it a point to carve out some time each day to read, especially on rainy days which I feel Nature provides specifically for that purpose.  Getting lost in an exciting mystery, an inspiring biography, or illuminating historical fact or fiction book clears my head and recharges my batteries.  And as much as I relish the escape from work, I do try each summer to read one book related to our field to gain new insights and renewed compassion for people whose lives are very different from mine due to disability.  Here are some of the books I’ve read over the past few years that I would strongly recommend.  I’m linking the titles to Amazon so you can read more about the books, but encourage you to visit your local library or patronize your local bookseller, both so very worthy of our support!

My Stroke of Insight:  A Brain Scientist’s Personal Journey by Jill Bolte Taylor, Ph.D.  41xxS5wUJtL._SX330_BO1,204,203,200_This is the brutally honest biographical account of a young, healthy, brilliant neuroscientist who was devastated by a massive stroke.  Amazingly, she was able to regain functioning through incredible determination and countless hours of therapies.  The account of her eight-year journey to recovery includes her memories of being completely helpless and unable to communicate, yet perceiving the attitudes and emotions of caregivers, even when she could not comprehend their words.  I always share this information in my workshops with school staff who deal with students who have significant disabilities.  You can view Jill Bolte Taylor’s TED Talk here, but read the book, too!

Ghost Boy:  The Miraculous Escape of a Misdiagnosed Boy Trapped Inside His Own Body by Martin Pistorius.

Screen Shot 2018-07-19 at 9.35.36 AMWell, the title pretty much says it all!  Martin was a perfectly normal and healthy boy until he was completely debilitated at age 12 by an unknown virus that left him locked in his body for 10 years.  I did a review of this book on this blog in 2015;  you can read it here.  I always include information from this book in my workshops, as the memories of Martin as a profoundly disabled school-age boy are eye-opening and shocking, and serve as a reminder to all educators to always presume competence.  Through Martin’s recollections, we also get a glimpse of the effect his condition had on his parents — another important insight that I share.  Martin Pistorius also has a TED Talk entitled “How My Mind Came Back to Life — But No One Knew,” but read the book first so you are even more blown away by his recovery.

51HsAQlyqFL._SX321_BO1,204,203,200_41QZ3WNoKNL._SX329_BO1,204,203,200_Two other uplifting come-back stories are “In an Instant: A Family’s Journey of Love and Healing” by Lee and Bob Woodruff, which recounts the recovery of this ABC News journalist after a devasting head injury in Iraq, and “Gabby: A Story of Courage and Hope” by Gabrielle and Mark Giffords, about the US Congresswoman who survived an assassination attempt but was left with lifelong challenges.

31-E5HeYuEL._SX334_BO1,204,203,200_A fictional story that I really enjoyed — and would recommend for young teens as well — is “Out of My Mind” by Sharon M. Draper.  This is the compelling story of a young girl with CP who is the smartest girl in her school, but is considered by all to be mentally challenged because she is unable to speak.  Her determination will warm your heart and change the way you view people with disabilities.

41fxsXxLq9L._SX322_BO1,204,203,200_There are scores of books about autism.   Any book by Temple Grandin is worth reading, as she generously shares her “insider’s view” of being autistic and offers valuable advice to parents and educators. The writing of “The Curious Incident of the Dog in the Night-time” by Mark Haddon perfectly captures the voice and thoughts of a young man with autism who relates well to animals but has no understanding of human emotions, who hates to be touched and can’t abide the color yellow.


This immensely popular story was made into a Broadway play.  Unlike some of the others I’ve mentioned, this book makes for light reading but will keep you thinking, long after you close the book.

519TerFSCjL._SX331_BO1,204,203,200_I am currently reading the 560-page tome, “Neurotribes:  The Legacy of Autism and the Future of Neurodiversity” by Steve Silberman.  The author presents a fascinating and sometimes horrific history of autism research and treatment from its earliest days, and spotlights many people on the spectrum who have used their unique talents and perspectives in important, but often invisible, ways (think computer programmers, NASA, etc.).  Indeed, he makes the argument that autism and ADHD are not errors of nature but rather natural variations in human development.  I’m only half-way through the book, so I’m just about done the section devoted to the history of autism and look forward to reading about the author’s view of the future of neurodiversity.

41JNxY4tU-L._SX326_BO1,204,203,200_For a compelling and honest account from a parent’s perspective, I recommend “The Child Who Never Grew” by Pearl S. Buck.  Pearl Buck’s daughter, Carol, was born with disabilities at a time when such children were hidden away in institutions to avoid shame on the family.  Ms. Buck was determined to provide the very best care for her daughter and others like her, championing the rights and acceptance of people with disabilities.  She candidly shares her struggles as a parent in this story that still offers timeless wisdom and encouragement, nearly 70 years after its publication.

These are just some of the books that I have found to be entertaining, enlightening, and thought-provoking.  What books would you recommend to your SLP colleagues?


The “Therapy Voice”

In grad school way back when, SLP majors were partnered with a classmate and sent out to observe SLPs in a variety of workplace settings.  We observed in a nursing home, a rehab center, a public elementary school, a hospital, a residential facility for clients with multiple disabilities, and a state school for the deaf.  Of course, the goal was to gain insight into each of these settings, into the types of clients who were served, how treatment was delivered, and personal reflections of each of the practitioners.  Following each visit, we were to write up our impressions.  This exercise was one of the most valuable experiences of my education, as it helped me to determine my future goals — the type of setting in which I did or did not want to work and how I envisioned my future self delivering services.  Much of this experience has faded from memory, having taken place over 25 years ago, but one observation has never left me:  the “therapy voice.”

It was in a hospital that my partner and I first heard the “therapy voice.”  The SLP met us in her office and we had a lovely conversation about the profession and her experiences with inpatient and outpatient therapy.  Then we followed her to bedsides and into the clinic.  While her therapy activities seemed appropriate to our novice eyes, what really struck us was the way her voice changed whenever she addressed her clients.  Louder, slower, and higher pitched, her voice took on a whole different persona — one that signaled, to us at least, the message that “you are so impaired, you don’t know what I’m saying so I will shout it at you.”  My partner and I looked at each in disbelief, that her friendly, conversational voice could immediately become so seemingly condescending.  Now, mind you, I fully understand that she had years of communicating with people who presented with strokes, brain tumors, neurological disorders, hearing loss, and dementia, and I fully understand that one’s communication style has to accommodate those conditions.  But we observed this same “therapy voice” when she was treating outpatient children and adults in the clinic for articulation, language, and fluency.  It was amazing to us, the way she could switch back and forth when treating clients with the “therapy voice,” then turning to us with comments in a conversational manner.  This wasn’t the last time I heard the “therapy voice” but it certainly was the first, most dramatic, and most memorable.  My partner and I vowed, as we walked out of the hospital, to never, EVER, use the “therapy voice” in our practice.

The bulk of my 25-year career as a public school SLP has been spent with students who have moderate to profound disabilities.  Obviously, I have had to adjust my language level with these students — shorter sentences, simplified vocabulary — but I have held to my promise and ALWAYS speak in a conversational tone of voice, one that presumes that “I know you understand what I am saying,” even when there is little or no outward sign of this.  In other words, presume competence!

Two books I read recently bear out my intuitive use of conversational tone:  “My Stroke of Insight” by Jill Bolte Taylor, and “Ghost Boy” by Martin Pistorius (reviewed on this blog HERE).  Both authors were suddenly stricken with profound injury to the brain, one by stroke, one by an unidentified virus, and were essentially trapped inside bodies that would not, could not respond or be controlled.  Both eventually recovered to a remarkable degree, thanks in no small part to their own strong will and the support of therapists, caregivers, and family.  Both relate horror stories of how they were sometimes spoken to by people (family and medical staff) who didn’t think they could hear or understand.  Jill Bolte Taylor includes a list of “do’s and don’ts” in her book, including the importance of communicating presumed competence and respect through words, but also through tone of voice and body language.  I highly recommend these two books to all SLPs in any treatment setting, as they provide a rare, detailed, and highly personal account from people who experienced traumatic loss of communication.

Beyond reading these books, I really haven’t given much thought to the “therapy voice” in years, but this spring, I saw how damaging it can be.  On May 10, my dear father suffered the first of several strokes.  He was flown by helicopter to a nationally ranked medical center and was given the “clot-buster” drug within the “golden hour.”  The stroke was on the left side of his brain, which initially caused right side paralysis and the inability to speak.  Twenty-four hours, he had regained movement on his right side and could speak, although aphasia was obvious in the “word salad” and word-finding problems he exhibited.  Within a few days, the aphasia lessened, and he was able to speak in longer, more accurate sentences.  We were so encouraged by this and assured him that progress would continue.  Unfortunately, less than a week after the first stroke, he had a second that required emergency surgery to clear a blocked carotid artery and to remove some of the new clots in his brain.  Clots from the first stroke were left in place, due to the risk of bleeding.  Dad again regained movement on his right side, albeit with weakness, and again could talk, but the second stroke wiped out the progress he had made and he was back to being more significantly aphasic.  One only had to look in his eyes to know that he was fully aware of what had happened and was very afraid.

Once medically stable, Dad was released to the local hospital in a small town near his home for two weeks of rehab — OT, PT, Speech.  Dad was evaluated by the SLP and therapy began immediately.  Due to work obligations and distance (85 miles from my home), I could not be with my dad during these first few days, but I did get out there on day 4 so I could meet with the SLP and observe therapy.  This observation was welcomed by the SLP and the rehab director, and I had a good conversation with the SLP about Dad’s status and goals.  Then, when we walked into his room, I heard it — the “therapy voice.”  “HELLO, RICHARD!  DO YOU REMEMBER ME? I AM HERE TO HELP YOUR SPEECH.”  This was said just inches from his face.  Dad immediately recoiled and looked stricken — facial expression, eyes, and body language all expressed this.  After a few minutes of this, I gently told the SLP that Dad’s hearing was fine and that his intellect had not been affected, only his ability to produce spoken language, and said that she could speak to him conversationally.  I also said he was having trouble with yes/no questions, but I was sure that he understood.  Dad shot me a grateful glance, but it didn’t change her approach.  She opened up a book of aphasia therapy exercises and asked him “WHAT GOES WITH —” questions.  When he couldn’t answer, she said, “YOU CAN’T DO THIS SO WE’LL DO SOMETHING ELSE.” She moved on a series of yes/no questions.  When he answered “yes” to “ARE YOU A WOMAN?,” she answered, “NO, YOU ARE NOT.  YOU ARE A MAN” and closed the book.  Dad looked even more stricken.  The next activity was naming photographs. He failed on the first three, so that activity ended, again with “YOU CAN’T DO THIS NOW SO WE WILL TRY AGAIN ANOTHER DAY.”  By this point, it was all I could do to keep from taking the cards from her and modeling, “Look at this picture, Dad.  What is this?  I’ll help you, it’s a ball.  What do you do with a ball?  Can you show me?   Yes, you can throw a ball like this; now you do it. You throw a ball.  You can kick a ball, too, like this. Now you show me, kick a ball.  Look at the picture again — see it is a ball, a red ball.  Can you say that with me?  Ball.”  But I didn’t.  After a few more failed activities, Dad watching all the time as data was collected, the session ended with Dad looking devastated and Mom in tears.  I left the room with the SLP and repeated, very calmly, that Dad’s hearing was fine and suggested that he’d respond better to a conversational tone of voice and instruction, rather than just data collecting (the eval had already been done, remember) to show what he couldn’t do, and perhaps she could be more instructive when he couldn’t name pictures. Dad was a very intelligent and proud man, and failure at questions a toddler could answer cut him to the core.  When speaking with the SLP,  I was very aware that I am NOT a hospital/rehab SLP and did not want to say or do anything that would make Dad’s next two weeks more difficult.  But I know how I would teach my students with disabilities — key word is “teach,” not just collect data.  It’s very easy when people have impairment to only focus on what they can’t do.  My approach is always to focus on abilities, no matter how limited, and build from there.

Well, according to my mom, nothing changed in those two weeks.  Dad responded very well to the OT and PT, gaining skills and trying again with positive effort when he didn’t perform to his highest level, but became increasingly despondent as speech therapy time approached.  After two weeks, he was sent home with in-home therapy.  Because I was up to my eyeballs in the crazy end of the school year, I was not able to get out to their home during the week when the new SLP was there, but after a few frustrating sessions, Mom told her I was an SLP and she immediately asked for my phone number.  We had a very good discussion in which she revealed that Dad would become emotional and even hostile when she was taking data on the same kind of tasks that he had been exposed to in the hospital.  Mom had already told me this, saying that the OT and PT did not take data in front of him and worked on skills that were functional in his home and related to his personal interests and goals, whereas speech therapy was limited to drilling him with questions.  I suggested that she put away the aphasia therapy book and cards for a while, and instead engage him in conversation about his family, his career, his hobbies, his dog, etc.  I told her that Mom had many photo albums of family members, present and past, and brochures from many places that they had traveled;  these would be great conversation starters for him.  Dad was an accomplished woodworker, so I suggested that she take him to his workshop and talk about the tools and the things he had built.  Dad lost the ability to read due to the strokes, but he was still able to put together jigsaw puzzles, an activity that he and Mom did every winter to pass the time;  that would be another way to work on language skills in a relaxed context. And I stressed that, although Dad was 85 years old, he was 100% independent in all areas of life prior to the strokes — drove a car, cut his own grass, handled affairs without any difficulty.  When I visited Dad weekly throughout this time, we had many great conversations about people and events in the past, conversations that he initiated and participated in fully, even if a word or two was wrong here and there.  He talked about his concerns for my mom and the future.  He could tell time and knew when his favorite shows were on.  I’ve never seen so many episodes of “American Pickers” as I did this past spring and summer, and Dad was always able to make insightful and relevant comments about this and other shows we watched together each evening.  I did not evaluate my dad and did not want to be his therapist, but it was very evident to me that his intellect was not affected. When we went out for a drive in their rural area, Dad was able to give me directions all over the countryside to point out places of interest, to get to a farm stand he particularly liked, and always found our way home — an errorless and most enjoyable change of scenery for him that gave him a sense of control.  All of this, I shared with the SLP, giving lots of therapy suggestions that Dad would respond favorably to.  I said I totally understood about the need for data (the bane of my school-based therapy existence), but suggested it could be done more discreetly.  The conversation ended very well, with the SLP expressing her gratitude for my suggestions, as it was clear that she wanted to do her best with Dad and that she was as frustrated as he was.

Well, I’d like to say it ended well, but it didn’t.  The picture cards came out again;  Dad blew up and refused any more therapy from anyone — no OT, PT, or speech.  We hoped after this meltdown that he would relent, and we encouraged him as much as we could to try again, but it was clear to him, and to Mom and I, that he was actually going to make more progress on his own, engaging in daily functional activities, having conversations about things that interested him, commenting during his TV shows, giving us directions when driving or about how to change the water filter, than he would be getting from an aphasia therapy book. And so, I started giving my mom strategies to help Dad that didn’t feel like therapy.  That Dad was so soured on speech therapy, right from the beginning, just killed me, as you can imagine, and I have to think that a more conversational approach that presumed competence would have yielded a more positive outcome.  I completely understood and explained to both of my parents that Dad’s anger and frustration was a very common bi-product of stroke and that it would ease with time and healing.  However, Dad was too demoralized by his experience with speech therapy, and then extended that to all therapies and medical interventions.  He didn’t feel any of it was helping him, and he was done with it all.  Once he made this decision, his anxiety level dropped noticeably and he had a good month of small steps forward.  I could see a positive change in his abilities and attitude every week and we were all greatly encouraged.  Unfortunately, Dad suffered additional TIAs and complications from which he could not recover.  On August 14, this proud, wonderful, admirable, and loving husband and father passed away.

Please understand that I write this not as an indictment of the SLPs who treated Dad.  SLPs are the most caring, compassionate people I know.  These SLPs were no exception. Both seemed to be genuinely nice and caring people, and I’m sure they have helped many patients in their careers. I especially appreciated the home-based SLP who reached out for ideas when she saw Dad shutting down.  As stated earlier, I’m not a rehab therapist, so my practice is not shaped by years of dealing with adults with strokes, dementia, etc.  Maybe rehab SLPs are more strictly bound to certain therapy materials and lessons;  as a school-based SLP, I have free reign to do whatever I think will be helpful to my students, be it traditional therapy or materials/strategies that are highly personalized and even unconventional.  That didn’t seem to be the case with the SLPs who treated Dad. I acknowledge that data must be collected to satisfy insurance requirements; it drives the IEP in schools, and I work hard to keep a balance between measuring progress and actually teaching.  I certainly acknowledge that Dad’s strong personality and damage caused by the strokes also contributed to his very negative reactions.  All that said, I guess I felt the need to write this for a few reasons.  I am still very much hurting over the loss of my dad.  I’m very saddened to know that he wasn’t helped by speech therapy and, in fact, was turned off to all therapies and medical treatment as a result.

This is the first time I’ve been a close observer of therapy with a loved one — very different from being the SLP treating other people’s loved ones.  It was an eye-opening experience;  I viewed the therapy professionally and my dad’s reactions to it personally, and found that very hard to reconcile.  While a person’s prosody may seem inconsequential, Jill Bolte Taylor and Martin Pistorius would disagree, and so would Dad and I. Even if he hadn’t been able to understand the words that were spoken to him, he immediately sensed that the “therapy voice” was an affront to his status as a successful, intelligent, dignified man, and that was his introduction to speech therapy.  I witnessed how Dad perceived each session as a series of tests on which he was found deficient, and saw how badly this wounded his pride and confidence. And I have to agree with him — the activities were rote and without instruction, strategies, or prompts to help him succeed.  No amount of encouragement from me could convince him that he would improve if he would just cooperate and try. This was heartbreaking for my parents and for me;  more than anything, I wanted to do whatever it took to help my dad recover his independence and dignity, and obviously, my mom desperately wanted that, too.   Mom and I saw how Dad watched data being collected after every question, visibly wincing and withdrawing more and more with each tally mark, and that has made me much more aware of the way I keep data with my students. I feel guilty that I didn’t speak up more strongly with the rehab SLP when I saw how offended and saddened my dad was by her approach and tone of voice.  I am not good at confrontation, I never pass judgment on a colleague, and I was in a very fragile place myself.  As a result, I feel that I was overly cautious in expressing my concerns. I also knew that the SLP was not trying to do any harm;  she was just unaware of the effect her manner was having on Dad.  If I had been more clear about my observations, would therapy activities and the relationship have improved?  Would Dad have been more accepting and willing to go along with therapy?  That’s all water under the bridge now for Dad, but maybe by voicing my concerns now in this post, an SLP somewhere might rethink his/her approach and somebody else’s loved one will benefit.  Indeed, shouldn’t we always engage in self-reflection about our practice and do our best to adapt our manner and therapy to each individual? That’s the first lesson in speech 101:  “Establish rapport.”  Right?  If nothing else, maybe the reason I felt compelled to write this post is to finally release some of the feelings that have been bottled up all summer.  It’s been a tough one.