Neuro Note: Ray's ALS Journey

Ray is a nurse, husband, dad, bicycle enthusiast who was recently diagnosed with ALS. He has a blog, full of humor and sarcasm that is dedicated to telling his story. This particular article I read was entitled One Year. It describes his first year post diagnosis. He talks about his family life, what it was like to tell everyone that he had ALS, and the changes he experienced in the first year.

A couple things I noticed when reading is that Ray is using humor to make his situation better. Immediately, I go into an OT mindset and think if that's the reason he is still doing so well. Seeing the funny side of things, keeping a positive mindset, and having a supportive family all could have impacted his ability to stay strong through this progressive disease.  I also noticed that he has had to make some drastic life changes since his diagnosis.  Ray is the epitome of an outdoorsman.  He used to love mountain climbing and would ride his bike daily.  These are both important occupations for Ray that he has come to terms with not being able to do like he used to.  One of his bucket list items was to bike from coast to coast. One cool thing that people following the blog have done is kept track of how many miles they've biked in order for Ray to "bike across the country". They've accumulated 42,000 miles so far!

My clinical takeaway from Ray's story was kind of an "ah-ha" moment for me. In class we always talk about home modifications as if anyone can do them. Well, my "ah-ha" moment is that isn't always the case. Ray lives in a 100 year old house with no bathroom on the bottom floor. He talks about how they had contractors come look but that would be a logistical nightmare with their layout and having to live there during construction. He also mentioned the option of a chair lift for the stairs, but that it was way to expensive for them. Ray and his wife talked about moving, but they raised their kids in that house and didn't want to live anywhere else.  So my take away is a pretty important one for OT.  For some situations, a textbook answer isn't always the right answer for the family.

I loved learning about Ray and getting a first hand account of his first year being diagnosed with ALS. His thoughts and attitude is something that truly inspired me.

Developmental FoR

I found interest in the Developmental Frame of Reference.  It encompasses the the sequential aspect of development and how behaviors are influenced through the mastery of previous stages.  People develop at different rates but each stage of development can only be achieved once the previous stage is completed.  Developmental FoR included 6 adaptive behaviors: sensory integration skills, cognitive skills, dyadic interaction skills, group interaction skills, self-identity skills, and sexual identity skills.  This FoR works with clients of all ages from childhood on. According to this theory, functional development would mean completing the stages of development in sequential order.  An OT helps intervene with maladaptive behavior and promotes sequential development. In school aged kids, a therapist might observe their social interaction with peers to assess dyadic interaction skills.

Three key terms associated with the Developmental FoR:
1) sensory integration skills - ability to receive, select, combine, and coordinate sensory information for functional use
2) dyadic interaction skills - ability to engage in a variety of primary groups
3) self-identity skills - ability to perceive self as an autonomous, holistic, acceptable person who has permanence and continuity over time

Reflection on Health Promotion and Health Literacy

Today in class, we talked about health promotion in the field of OT.  Through this lecture, I got a better understanding of our role in a interdisciplinary group. Dr. Flick gave an example about a client she had in acute care in which the dietitian modified her meal plan to a no sodium diet. The dietitians goal was to improve the clients health through food consumed but failed to take into account the ability for the client to continue the diet plan post discharge. That is where the OT steps in.  The client had low muscle function in her upper extremity, and typically ate canned vegetables and microwave dinners because they were easy for her to prepare for herself independently. Both of those are high in sodium though, making this new diet difficult to achieve in her home setting. The dietitian and OT worked together to then make a plan that would still promote independence in the client and work with the new diet. I also learned about the importance of health literacy. Making sure a client has a clear understanding of what is going on and what is expected of them is essential to having success in the future.  If the client does not understand the purpose behind a task, they're less likely to do it consistently or with purpose. Mutual understanding and building a therapist-client report can help with communication and make the client feel more comfortable when asking questions, and therefore, have a better understanding of their health goal and how to achieve it.

OT Observation

When shadowing at an early intervention clinic, one of the OTs I worked with spent a ton of time with Theraputty. Since talking about the importance of using meaningful activities, it makes me question the extent of use for it. But at the same time, at such an early age, are meaningful activities as 'meaningful' to a 2 year old as compared to a school aged child. So from that standpoint, I can see the reasoning behind her actions. Some meaningful activities were used, such as feeding, and play based activities but they weren't the main event. I also shadowed a therapist that worked at a private school in Little Rock for children with special needs and the experience was the complete opposite. His sessions were almost completely full of meaningful activities. We were tying shoes, pouring water from a milk jug into a cup (the clients mom wanted her child to be able to pour himself a glass of milk without spilling it) and working on handwriting. I learned a ton from him including how to give the child an option of what he wants to do. He would write the activities to be accomplished that session down on scraps of paper and let the kid scooter over to the papers an pick one out. I'm glad I got experience with each side of the spectrum and will use it in my future practice.

Reflection on "Au-some Swimmers: The Role of OT in Swim Lessons for Kids with Autism"

This podcast truly helped me understand the importance of seeing an activity through an "OT lens". When I initially thought of swimming, I assumed it would be a predominantly leisure activity. But by looking through the OT lens, there are so many more components of the activity that can be transferred to other tasks or occupations. As Nick Murray explained in the podcast, teaching a child with autism to swim not only teaches them that activity, but works on other skills, such as sequencing, sensory processing, and motor function, that are important for the development of that child.
One example he gave really hit home for me. He told a story about a child with autism who hated getting his head wet. Not only does that make the task at hand, swimming, difficult, but also can make the daily task of showering or washing his hair difficult. By easing him into the idea and allowing him to pour water on the lifeguards head, making the whole experience fun for him, he warmed up to the idea and made progress towards the ultimate goal, submerging underwater and eventually swimming. Not only does this progress show up in the swimming pool, but I can see it transferring into his daily hygiene routine. To me, that's the beauty of our profession. We use meaningful activities to develop skills that will help in future activities and child development.

Occupational Therapy Performance Framework

The Occupational Therapy Performance Framework: Domain and Process is a document created by AOTA that describes a common understanding of the domain of occupational therapists and creates a vision for the profession. The purpose of the OTPF is to insure that all professional in the field of occupational therapy have a common understanding of the purpose of occupations, client factors, performance factors, performance skills, and context/environments of individual clients.

OT Advanced Certifications of Interest

A couple ideas automatically came to mind when thinking about further specializations within the field of OT.  Pretty much from the moment I knew I wanted to be an OT, I knew I wanted to specialize in assistive technology.  Technology allows us to accomplish tasks in a more efficient way than before.  Communication boards, for example, have improved so much in the past 15 years.  They're now giving people the opportunity to communicate with peers ease. Not only does it give opportunities but technology is such a fast growing field, there is always new information coming out and new opportunities to expand knowledge.

My Experience with People First Language

One of the things I am most thankful for as an OT student is the year I took off between undergraduate and graduate school.  At the time, I saw it as mostly a negative; all my peers were a year ahead of me, it pushed back my 'life plan' a year, and I didn't know how to occupy my time. That is until I applied for a job as a teachers aid at a local school for children with special needs, Access Group Inc. I decided if I was going to take a year off, I was going to spend that year learning first hand from therapists and teachers in a field that I hoped one day, I would be lucky enough to join.

Access didn't just teach me a couple things, it taught me everything. As the teachers aid, I was with the kids 100% of the day. I helped teach our Association Method in the mornings, was the leader of Simon says during break, supervised and assisted during Art, was the lunch lady and designated food cutter at lunch, and even put them in their cars at the end of the day and gave the parents a brief play-by-play of the events of the day before the car behind started honking. I'm not going to lie, it was exhausting. But by being with these kids so much, you really get to know them. You see their insecurities, their fears, their triggers, and help them learn how to talk it out.  One of the recurring things I saw in some of my kids was low self esteem.  Low self esteem because for some of them, they had been constantly reminded, whether from a difficult task or someone labeling them, that they had a disability.

At Access, we fostered an diagnose free environment.  They weren't kids with apraxia or down syndrome, they were just kids. I think this is a mindset that every person and future clinician should take on. The first step of that is to teach the importance of people first language.  Not because it's "politically correct" but because it reminds that individual that they are a human being first before anything else. Second, I think people need to understand when the diagnosis is even relevant.  Nine times out of ten, in a social conversation, someones diagnosis is not needed to complete the story.  Instead of being 'a boy with autism in my class' he should just be a boy in the class.  Why does the person you're telling the story to need to know he has autism?  Diagnoses shouldn't be used as adjectives. There's really no need.

As a future OT, I think this is an extremely important part of being an effective clinician.  We will be using diagnoses on a daily basis so it's easy to get caught up and think of them as a descriptive way to distinguish our clients.  Being aware of this, and actively promoting a people first approach will establish respect with clients and build self esteem.

Thanks for reading my two cents!

And for future reference, I'm probably going to bring up my crazy kiddos from Access any chance I get on future posts. :)

Best,

A Moderately Stressed OT Student