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Jun
18

Temporarily Abled

Pause your day for a moment and deliberately gather a handful of some things you regularly do every day. Think of some things you do without thinking too much or without putting much effort forth. Making coffee, emptying the mailbox, carrying my own towel to the shower, walking through the front door of the grocery store or doctor's office, carrying an onion from the refrigerator to the cutting board with a knife, are a few such activities that come to my mind. I want you to keep the activities you thought of readily accessible, perhaps, even write, type, or dictate them into a quick note. I'm actually going to ask you to make two lists, so here's a template for you to use, with two columns and some ideas to get started, if helpful.  

visit link for access to 2 column chart for use with this blog
Now, I'm going to make an assumption that many of the readers of this PATINS Ponders blog are educators or other professionals working with learners who struggle with one or more aspects of their daily world. ...some of my most favorite people in the whole world, by the way. I'd like you to now think of why you do this work. Write, type, or dictate the top three reasons you do this work. You've probably stated this many times when people tell you, "I could never do what you do," or "You're a very special kind of person," and then ask you, "What makes you want to do this work?"

Place your second note next to your first note now. Compare them. Do any of the items (activities) from your first list appear, in any way, on your second list (why you do this work)? If they do, you probably already know what I'm going to tell you next! If they do not, stick with me here and let's think about why they should. 

Several years ago, a colleague for whom I have a lot of respect, whispered something to me. She looked around first to make sure no one else was within earshot and still whispered the term to me, "Temporarily Abled." It took me a moment to process her term and while I was processing, she indicated that she was whispering it as to not be offensive to anyone around. At the time I nodded my head as she explained that we're all "Temporarily Abled" in one or more ways, inevitably due to either an accident/injury, disease, or simply due to aging. I've spent significant time thinking about her words since that time and more importantly, why she felt it could be offensive to hear. I do want to say that I understand that disability, for people who have a disability now, is much deeper than using this term or this concept to promote understanding. However, the conclusion I've come to is that there is so much work still to be done for our world to truly be inclusive and there are so many people in our communities who have no idea what that even really means, largely in my opinion, because it hasn't had a personal effect on their life... yet. I do think this matters and I think it has potential for making a difference more quickly, fully and meaningfully including all people in all of our communities, all of the time. 

Moving Image of Daniel riding a dirtbike up steep hill and flipping it over at the top
Seven weeks ago, doing what I love on a steep hill in the woods on my old dirtbike, I completey dislocated my right knee, severing all four ligaments and causing cartilage and meniscus damage. Yes, that's right, the MCL, LCL, PCL, and ACL are all torn! I didn't even know there were so many CL's in my knee! Two required surgeries six weeks apart and 9-12 months of physical therapy certainly have put some things into perspective and strongly reinforced many things I already knew. Several of the people in my personal life whom I consider the smartest, strongest, kindest, and most creative I've ever known, have a disability. From this angle, accessibility and inclusion have been important to me since I was a young boy. However, the inability to walk, carry anything, perform manual labor, sleep normally, etc., these last 7 weeks have reinforced another dimension of my understanding of access and inclusion as well. These personal experiences, while never as meaningful to someone else, are still so important to share. While it may not be your experience (yet), my experiences just might add something to your second list that wasn't there before. 

collage of three images showing three sides of Daniels knee with large surgical incisions and stitches.

Some things I've learned recently and will never forget: 
  1. Automatic or button-operated doors that work are very important. Being non-weight-bearing and havinig to fully utilize crutches, I simply cannot open some doors by myself. While most people are very quick to help, if they are around, I just want to be able to open the door myself! Many places have not had working automatic doors, including the hospital where my surgeon works AND the building my physical therapy is in! 
  2. Knowing where my assistive technology is at all times, that it's close to me, and trusting that other people aren't going to move it, is essential and causes a good bit of anxiety. For me, it's mostly my crutches. I simply cannot move from one place to another without my crutches unless I sit down and scoot. For someone to see my crutches as a tripping hazzard, for example, and move them, is a lot like taking my legs away from me. I compare this to taking away a learners communication device or system for any reason... behavior, battery dead, damaged, etc.  My crutches have become a part of my identity and nearly a part of my body. Moving them or playing with them without talking to me first feels violating. I'm not sure we always keep this in mind when we work with students using assistive technologies. I think that sometimes we feel we're helping by making adjustments or moving things and it might NOT really be a help at all! It might actually change the task entirely. 
  3. High Expectations are essential! Be very critical about ever telling someone that they "can't" or "shouldn't" do something that they want to do! Further, expect that they will do things that they think they cannot! In my case, while I may not be able to carry the onion and knife to the cutting board, I can sure as heck prop myself up and chop it like a pro! ...right along with the peppers, carrots, tofu, and zuchini! I actually love when I'm asked to do things instead of asked what someone can do for me! "Can you come chop this onion." "Can you refill that soap dispenser in the kitchen." I already know that I need many things done for me, but I can totally still do other things and I need to feel needed as well. Let's try to remember this with ALL of our students! 
  4. My "mule pack" is essential to my level of independence. This is a simple and low-tech assistive technology that I greatly rely on. It's a small backpack that I can carry without my hands, that I cram full of as many things as possible allowing me to not have to ask someone else to get them for me. All the things I need daily or that are high on the list of importance, such as my wallet, tools, medical items, snacks, personal care, etc. This allows me to have many of the things I regularly need with me, minimizes repeat trips, and minimizes my reliance on others. 
  5. Steps! There are just some steps that are too high, too steep, or too slippery for me to even consider using.  This means that I have the choice of not accessing that place or sitting down and scooting up or down the stairs...neither allow me to feel dignified or included in that place.
  6. Trust! Whether I like it or not, I simply need help with some things. Our students do too. Having someone you trust immensely is very helpful. Someone you trust to encourage and push you to grow, to assist you minimally enough to preserve your independence and dignity, and to still expect great things from you. This is also exactly what our students need! Thinking about this from the perspective of what I need from my trusted help right now, most certainly provides some guiding mental framework for when I'm the one helping students in the future.  
These are just a small handful of some things that I've realized and/or had solidified for me recently. I'm sure I'll have many more to share. This has truly reinforced the fact that accessibility is so important for everyone, all the time, even if you aren’t one who needs it right NOW. Chances are definitely that you will need something different, something specialized, or just something more accessible at some point in your life, either due to an accident, an injury, a disease, or through aging. The notion that accessibility only matters for a small percentage of “the disabled” is so completely short-sighted and irresponsible to your future self! If, for no other selfless reason, try to keep in mind that the fight for inclusion of all people, high expectations of all people, accessibility to all places for all people is a critical one for more reasons than you might know right now. The loss of or lessing of inclusionary concepts in any amount is a very slippery slope. Work hard, daily, to build a culture of increased expectations and inclusion of all people, never letting that lever tip in the opposite direction. Imagine all the things that are simple for you now that could very quickly and easily be otherwise...what sorts of actions on your part TODAY might better prepare your world for that scenario...what sorts of people would you want surrounding you in that sort of scenario? Speak up when you notice inaccessible entries, public televisions without captions, etc. Learn and become better equipped through the many diverse PATINS Trainings on our Professional Development Guide and our Training Calendar. Trial the many assistive devices available to you, through the PATINS Lending Library!...all at no cost to you, of course! Consider networking and furthing your knowledge-base by attending the FIRST-EVER PATINS Access to Education VIRTUAL Conference this coming November!  



2
Jun
12

Don’t Quit: Commit (to taking care of YOU)

Scrabble letter tiles in spell the word commit


It can be difficult to commit to something knowing the hurdles, distractions, and disappointments to others that you may face. It can be especially difficult to choose to take care of yourself. If you are reading this, you are most likely a giver, not a taker and consistently put others’ needs ahead of yours. You are important too and need to nurture your physical, emotional, and mental health.

During a middle school field trip to Purdue University, I decided that I wanted to attend. I didn’t know what field. I was accepted into Freshman engineering. However, no-one in my family had gone to college; I didn’t know how to navigate the path. I had no mentor. I joined the Marine Corps to earn tuition money. I was determined to be a Boilermaker.

While stationed in California, I volunteered at a relay service center for people with hearing impairment. I connected the hearing impaired with the hearing. I answered the TTY and voice called to check on people’s photo orders, prescriptions, and to connect family and friends. I knew what I could do now! I reapplied to Purdue, was accepted into Speech and Hearing. I began in August of 1986.

Starting college at age 22, I was motivated to complete my studies and get on earning a living as quickly as I could. I took a full load most semesters, worked 20-30 hours weekly, and took summer classes. I finished my Bachelors in 3½ years. My M.S. followed 18 months later. Riley Children’s Hospital was in my sights for my Clinical Fellowship Year (CFY). I wanted to learn from a team of professionals. I completed my CFY in 1992 at Riley. I spent the majority of my career (21 years) at a special education cooperative that served three school districts.

From 1995 to 1996, I met daily with a friend for weightlifting, M-F at 5:30 am for a 2-hour workout. I used a simple spiral bound notebook to track every repetition, set and food intake (over 5000 calories daily). Having an accountability partner AND tracking my data kept me on course.

In 1996, I switched my focus to triathlons and running. These communities have been some of the most supportive groups I have been with. They nurtured my physical and mental health. The running club’s icing on the cake (at least for me) was the Sunday morning long run. Back then, it was 5:10am start year round regardless of the weather. I am still a member, 24 years and counting, still do speedwork on Tuesdays, tempo on Thursdays and long runs on Sundays (current Sunday streak is 27 weeks in a row.). We have chosen a more civil start time of 7:00 am. This commitment has kept me motivated during even some of the most difficult times. The Sunday long runs have been my physical and emotional support. You can talk and listen to a lot during 2 hours!

It hasn’t been easy. I’ve experienced numerous setbacks; plantar fasciitis (several times - kept me from marathoning for several years), torn meniscus – 3x in my knees (usually a month of no running after the surgery), a compressed nerve behind my knee that caused foot drop (had to cancel a 50 mile race), back strains, shoulder surgery. Each time, I was determined to come back and usually did AND ran faster. Commit to taking time to rest. We need to rest too.

The running club family helped many of us reach our goal of qualifying to run in the Boston Marathon. I tried for 3+ years to get qualified. I completed Boston in 2004. My biggest running goal was to complete a marathon (yes - 26.2 miles) in all 50 states by my 50th birthday.  Didn't happen...yet.  See above. I have completed 42 with the help and support of many friends. My most recent was the Mardi Gras Marathon in Februrary 2020 (As far as I know, I didn't catch COVID-19).  I'll get there. Preparing for a marathon takes several months to properly prepare for the physical and mental feat. I was supposed to run 3 marathons last weekend. Travel restrictions hit the brakes on that. I'll finish those 8 states and save Hawaii for my final marathon. What big goal do you have to keep you going?

I dropped out of a race ONCE… the dreaded “DNF” DID NOT FINISH in a 100 mile race at mile 95. Yeah, I know, “only” 5 more miles. I had been running in the Virginia mountains for 34 hours with 16,000 feet of elevation change; hallucinations, exhaustion, and a golf ball size knot in my quadriceps muscle all together screamed at me saying “that was enough.” Honestly, I had not prepared properly. I was determined to complete the distance; it took me 25 hours at the Kettle Moraine 100 miler in 2005. I committed right then to NEVER do that to my body again!

During this difficult and stressful time due to COVID-19 and Continuous Learning (Indiana’s name for “Virtual/Distance/e-Learning) it’s critical to commit to taking care of yourself mentally, physically, and emotionally. You have to find your “club” or support.

Working from home makes it all too easy to work from sunup to sundown, to neglect your physical health, and become disconnected from others because of social distancing. I miss being around my co-workers, students, stakeholders, family and friends. I have committed to taking care of myself so that I can be a better husband, father, grandfather, and member of the PATINS team.

I work too much (ask my wife). I exercise and usually eat pretty well (I do have a sweet tooth). Since joining PATINS in November of 2019, I have worked on my leadership, mental, and emotional well-being by reading a wide range of books (40 books in addition to numerous professional journal articles), meditating off and on (mostly off though!), and talk to friends on the phone and FaceTime.

Stay healthy and commit to doing something every day to take care of YOU:
  1. Mental health - read (checkout library books for FREE using the app called Libby), meditate, do yoga, call a friend, write a letter, etc.
  2. Physical health on your own or with a partner - walk, ride a bike, run, lift weights, stretch, do yoga, etc.)
  3. Emotional health – talk to a friend or other supportive person, take breaks during the work day, dress for work, limit your hours and stick to it, work will always be there, do something with your partner, kid(s), family or friend(s).
  4. Check out the PATINS Training Calendar for opportunities to grow
  5. Look through the PATINS Lending Library to borrow something new to you (shipping is FREE both ways)
  6. Attend the Fall Access to Education Conference

0
May
22

Be a sunshine

I was happy to pass on my blogging assignment to my beautiful daughter, Courtney Cantrell. Courtney is an SLP and works for Easter Seals. She knew I was struggling with a topic and offered this wonderful idea for a blog, I thought it was great so I asked her to go ahead and write it! I'm so glad she did, I think it is wonderful!

“We’re all in this together.”

This is a phrase I bet you have probably heard a thousand or more times over the last couple of months. As I was talking with clients and checking in with families this week, I was reminded that life is still going on beyond the crazy epidemic happening. Family members and loved ones are in the hospital or passing away unrelated to COVID-19 and family's problems are still occurring every day. So as I sat worried about providing the best possible teletherapy and phone consults and even safe in-person therapy as I can, I began to shift my focus from the little details surrounded by the way our lives and therapy has changed from the virus and shifted it to a simple question from one of my favorite tv show doctors,  “How can I help?” Not just with speech therapy and the issues surrounding the virus, but the simple things our complex communicators and clients cannot understand or express.

How can I help my clients understand why they are attending their grandpa's funeral virtually or eating pizza for the 100th time because their parents are going through so much they can’t find time to cook? I will bet that in the last 48 hours you have talked to a friend, colleague, or family member about all the changes happening daily around us or a simple thing that occurred in your life that you just needed to vent about. For our clients, this simple stress relief we take for granted is often one of their greatest challenges. Simply expressing their wants, needs, and feelings. So back to the question: “How can I help?”

For me, when I’m stressed I go to my mom for not only simple venting but to talk through how I can help my clients express themself and understand everything happening. I call her mom, but most of you know her as Sandy Stabenfeldt (ICAM Digital Specialist).

Let PATINS and ICAM help you help your students in the ways that are often overlooked. If you have a client and you are running out of ideas to help, talk it out with an ICAM or PATINS staff member.

Or:

Let my amazing momma, Sandy Stabenfeldt, or a member of the ICAM staff help make that pizza menu into accessible digital text that all of our students can access.

Or:

Borrow an app from the lending library that allows them to express their emotions or a silly app that allows them to forget their stresses for even just a moment.

I’ll end with one of my favorite quotes: “You are the one who can fill the world with sunshine.” -Snow White. Find a way today to be a little sunshine for your clients who are struggling to understand or express themselves during their life that is moving on with or without COVID-19 and maybe ask your families “How can I help?”

Courtney Cantrell, M.S. CCC-SLP
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