There are a few ways you can prepare for the CBIS exam – you can do self-study with The Essential Brain Injury Guide 5.0 (the CBIS textbook/reference), OR you can attend a CBIS training session with a Certified Brain Injury Specialist Trainer (CBIST). 

So you have studied and even taken a CBIS course, but what to expect now? 

In order to take the CBIS exam, your application has to be approved by the ACBIS – you can’t take the exam in the online ACBIS portal until you get the seal of approval from them.  You can check your applications status either in the ACBIS application portal, or by emailing acbis@biausa.org.

The ACBIS now utilizes an automated proctoring system so you can take the exam whenever you feel ready – keep in mind though that if you take the exam at night or on a weekend, you’re going to have to wait until the next business day to get any type of assistance in the event there’s a technical hiccup.  In the ACBIS portal, there’s instructions on how to check and prepare your computer to make sure everything is going to work well when you’re testing

Need to take a review course? Check out – the Certified Brain Injury Specialist live course AND Exam!

Who is eligible to take the exam?

• Applicants must have had 500 hours of currently verifiable direct contact experience with people with brain injury.  Experience can be paid employment and/or academic internship.
• Qualifying experience must include formal supervision or have been conducted while the applicant operated under a professional license.
• Volunteer work and other personal experience does not qualify.
• Applicants must have a high school diploma or equivalent.

How does the exam work? 

The exam is 70 questions, multiple choice with 5 possible options.  Be sure to read each question carefully as there can be some tricky language such as “except”, “all of the above”, “none of the above”, and “A and B ONLY”.  You must achieve 80% or above on the exam to obtain your CBIS credential.

Still have questions? Have a look at our CBIS FAQ page!

How long should I study for the CBIS exam?

This is a question that we get often, but that there isn’t a direct answer for… Do some self-reflection and see how you learn best.  Think back to the last time you had to study for an exam in college – did you notice yourself re-writing your notes or making your own outline?  Did you use a highlighter and post-it flags?  Did you repeat stuff aloud as you were reading it?  If you feel you’re more of a ‘visual’ learner, you may find yourself using highlighters and rewriting the outline to structure things so it makes more sense to you. 

People who take a CBIS course will also connect with others in the class and form study groups – it’s never a bad idea to get to know your fellow participants!  There’s no prescribed amount of time it takes to prepare – again, you have to think back to the last time you were in college and how long it took you to feel prepared for your classes, assignments, and exams. 

If you took a prep course, it’s a good idea to schedule the exam within 2-3 weeks of the end of course so the information is still fresh in your mind.  Taking time to prepare is good, but taking too much time can blur all of that good info you’ve got stored in your noggin.  

Are there any resources to help me take the CBIS exam or prepare?

ARC Seminars offers a 2 day, 13 hour long exam prep course that comes with a variety of resources, study guides, and as well as access to an experienced CBIST who can help you navigate preparing for, and obtaining your CBIS credential.  

The CBIS prep course has a live and a self-paced version – so whatever your study style, we have something for you! Have a closer look right here – CBIS Training course & Exam

You can also find a Facebook Group with lots of CBIS and CBIS hopefuls, where you can ask questions, get study tips, and discuss clinical situations with other neuro peers! Check it out right here!

You can contact us below if you have any more questions, or reach out to Allison@arcseminars.net. Good luck!

Allison Frederick

Allison Frederick, M.S., CCC/SLP, CBIS-T has been a practicing speech-language pathologist for over 10 years.  Allison graduated from Bloomsburg University of Pennsylvania in 2007 and has worked in subacute, LTC and intensive inpatient rehabilitation. She is passionate about the brain injury population and making higher-level neuro education available to everyday clinicians.  Allison hosts a brain injury journal club on the first Thursday of every month free for all interested.

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Whether you’ve used it in your occupational or physical therapy practice, seen it in an article or heard about it on television, the words “mirror therapy” likely aren’t unfamiliar to you.  But unless you’re a therapist with all of the answers (and if you are, please reach out to me. I have questions) there’s a good chance you’ve had less than amazing success with this technique or are just fuzzy on the details for using it.  I mean, the concept is great, right?  But when you get to the nitty gritty…how and why does this technique work?

Mirror Therapy is just one aspect of something called Graded Motor Imagery

Graded motor imagery is a rehabilitation program that has been shown to be effective in treating complex/chronic pain and movement issues including stroke.  It is broken down into three aspects – laterality, explicit motor imagery, and (you guessed it) mirror visual feedback (better known as mirror therapy). That’s right – if you’re trying mirror therapy & not seeing results, it might be because you’re missing the other two pieces!  This top-down treatment approach aims to normalize central processing, correct cortical changes that occur secondary to complex and chronic pain, and decrease the patient’s experience of pain with the added benefit of normalized movement patterns.

Looking to dig deeper into stroke rehab techniques? Look no further…

Defining Laterality

This is left versus right discrimination.  Research has shown that people experiencing pain have decreased accuracy when identifying an image or body part as being right versus left.  As you may have seen in practice, patients with neglect are often challenged to correctly identify their left side versus right side or to attend to task items on the left versus right.

• You can assess your patient’s skills with laterality by asking them to identify their own body parts as right versus left, images of body parts as right versus left, and ability to  locate right or left task items correctly when cued.
• Laterality cards showing images of right and left body parts can be correctly identified and sorted – upgrade this activity by requiring increased speed.  Be sure to mark how many your patient was able to sort correctly and how long it took them as this makes a great goal!
  

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Explicit Motor Imagery

This is creating a clear mental picture of a movement or activity – actively envisioning the affected body part completing without pain or restriction.

• This step has been postulated to activate mirror neurons – these neurons help us learn through observation and imagination and have been even shown to activate with auditory cues!  This is thought to stimulate the motor cortex in a meaningful way – almost as if the movement was actually occurring successfully and without pain.
• Have your patient imagine a very particular task – you can assess their skill with this by asking them to verbalize what they are envisioning with detail.  Demonstration may be effective for your patients here as well to help them independently envision the task at hand.
  

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Mirror Visual Feedback

(Mirror Therapy) Using a mirror to “trick” your brain into thinking the affected limb is moving without pain/restriction by moving the unaffected limb. This is most effective if the affected limb is moving as well.

• Begin with having the patient observe their functional limb complete a movement or task through the mirror.  If the patient is able to do this without pain or discomfort – progress to moving the affected limb while looking at the unaffected limb in the mirror.
• This aspect of graded motor imagery is thought to provide strong sensory input that reteaches the brain how to move without pain or limitation.

Spenser Bassett

Spenser Bassett graduated from the University of Findlay with her Doctorate in Occupational Therapy in 2022. She currently works in subacute & LTC, and is ARC Seminars’ Associate & Social Media Developer. Spenser is passionate about promoting diversity in rehab spaces & empowering rehab professionals to succeed beyond classroom walls.

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As PTs, OTs, and SLPs who work with people who have sustained a concussion of mild brain injury, we are very well acquainted with ‘traditional’ treatment strategies, including vestibular rehabilitation, visual impairment interventions, and even headache management.

In a busy and functional-goal-heavy environment, it can be easy to get so focused on measurable outcomes that we do not consider slowing down and integrating mindfulness and meditation as a skilled concussion intervention… But should we?

Concussion and mTBI

Concussion/mTBI and PCS – the persistent constellation of symptoms that can impair function for those post injury – present a wide range of symptoms. Many of these can be ‘invisible’ symptoms, such as headache, sensory intolerance?, difficulty in executive function, metacognition, and concentration. Difficulty or inability to perform at this higher level can have a devastating effect on the individual– deeply impacting their self-esteem.

In fact, depression can occur in over 50% of people who have sustained a concussion. This suggests a link between brain health and mood, as well as between perceived self-efficacy, or difficulty completing tasks, with mood. This correlation is high enough to be a real concern to clinicians working in the mTBI population.

Why mindfulness?

Mindfulness has received attention in the medical and scientific community for the past few days, as it has been shown to have a direct effect on grey matter growth.

Mindfulness has been proven in  a variety of fields to boost neuroplasticity and actively work on brain regeneration post injury. It is also shown to increase brain activity in areas that may be protective against cognitive decline related to aging– another important consideration for those post mTBI, as dementia is more prevalent in this group.

Integrating mindfulness into your practice with patients’ post-concussion/mTBI can have multiple benefits! 

Mindfulness is shown to improve many of the areas that can be impaired post-concussion; including attention, memory, frustration tolerance, mood, metacognition, and executive function.

How can I incorporate mindfulness into concussion practice?

Using mindfulness may seem intimidating initially, but can be straightforward to include in practice in many ways – no matter what profession you approach it from!

Balance

In the realm of Concussion rehab, physical and occupational therapists may be targeting dizziness, balance impairment, and oculomotor function. Balance impairment and increased falls risk is reported in 30-50% of those who sustain a concussion.

Traditional balance rehab programs may have a place, but consider including mindfulness-based-practices into your therapy as well!

The positive link between mindfulness and body awareness, pacing, balance, and falls risk has been well established – brief sessions of ‘mindful movement’ can have lasting effects on body awareness, postural control, and balance. Mindful movement refers to engaging in different movements and exercises while engaging full attention to the movement of the body and breath.

The practice of mindful movement can even begin seated, where the person may notice the weight of their limbs and then transition into movements. Physical Therapists can assist their patients with these interventions and set them up with HEPs that include mindful walking programs, meditations, and yoga.

This study even demonstrated increased use of external focus strategies in those whose balance was impaired, supporting that even the shortest of mindful attention practices can greatly improve balance overall! 

Read more about how to use attentional focus here!

Mindfulness based yoga has a plethora of benefits to improve balance and decrease falls risk, as well as improve overall mood and self-efficacy.

Pain

Pain, specifically headache, can be a recurring complaint for those post-concussion. Mindfulness practices that focus on breath work, relaxation of tense and tight muscle areas, and release of stress associated with chronic pain, can help alleviate this with your patients.

The link between pain relief and mindfulness is more complex than at first glance – and works on a multitude of neurophysiological pathways! Opioidergic mechanisms have been shown to mediate analgesia through attentional control, meaning that the using attentional control can quite literally change the brain mechanisms to be able to control pain.

This astounding fact may have clinicians asking – why hasn’t mindfulness been taught to therapists as a keystone intervention?

Sleep

Sleep disturbances are a common complicating factor for those post mTBI- and are thought to be related to circadian rhythm shifts. Up to 70% of people post-concussion continue to show sleep disruptions months post injury, with consequential fatigue impacting their daily life.

Mindfulness meditation practice has been shown  to have a significant effect on sleep quality in the treatment of those with sleep disturbance.

It goes without saying – if our patients are unable to sleep, or are extremely fatigued, that they are going to be less able to engage in a therapy program; be more at risk of falls and accidents, and have a domino effect of undesirable consequences. Therefore, addressing sleep hygiene should be top of mind for clinicians who work with those post mTBI.

How can you incorporate mindfulness into sleep therapy? Teach your patients Progressive Muscular Relaxation, diaphragmatic breathing, and attentional focus strategies that they can use at night. If they have a device that can play a podcast or music, they can incorporate this as a guided meditation to further improve their practice.

Depression

It is no doubt unsurprising that depression is an issue that affects about 50% of those post mTBI. As stated previously, depression can occur because of physical changes in the brain post injury – suppressing neurotransmitters that regulate mood; from trauma related to the injury; or as a response to low self-esteem and self-efficacy, and what the person perceives as “lost.”

Knowing, as we do, that mindfulness can effect actual changes in brain chemistry, it follows that it can be a powerful tool in assisting with depression management. MBCT (Mindfulness Based Cognitive Therapy) has been shown in some research to prevent depression recurrence as effectively as antidepressant medication.

Powerfully, mindfulness can teach our patients how to recognize their unhelpful thinking patterns, and engage with their mood in a more constructive and empowered way; as well as emphasizing self-compassion.

As therapy professionals, we may be familiar with the term ‘therapeutic use of self;’ practicing self-compassion and mood stabilizing mindfulness with your patients can fall squarely into this category. Furthermore, it may have knock on effects to the rest of your patients function and engagement in both their therapy and their community.

Cognitive impairment

Finally, the cognitive impairments associated with mTBI and concussion can also respond extremely well to the integrations of mindfulness. Mental fatigue has shown to be improved through use of mindfulness based stress reduction; and cognitive performance overall also shows improvement with use of these techniques.

Verbal learning, memory capacity, and attention correlate positively with treatment; which again is incredibly important to clinicians working rehab – if our patients are having trouble with concentration, recollection, or processing of instructions, then incorporating brief mindfulness breaks or mediation prior to challenging tasks may boost their outcomes.

Ruth Polillo

Ruth Polillo, MSPT, CBIS: Ruth graduated with a Master of Science in Physical therapy degree from Thomas Jefferson University in 2005, and has gained experience in every setting a therapist can work in.  She is a co-founding member of ARC & an enthusiastic presenter! Ruth is passionate about continuing education and making hands-on clinical skills available to clinicians.

As you can see, many of the functional goals that we may set in therapy can be complemented hugely through the incorporation of mindfulness-based practices. Given the strength of the research, it makes sense that every clinician working with concussion and mTBI should consider mindfulness as a therapeutic complement.

To learn more about Practical Approaches to Concussion Management, check out our course on the topic, right here!

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Utilizing the Real-Life Conversation Skills Video Course to Navigate Comfort, Stretch and Panic Zones in Social Skills Development for Individual with ABI

Comfort, Stretch and Panic Model

One helpful model for understanding personal growth within the context of social skills development post ABI is Karl Rohnke’s Comfort, Stretch and Panic model, which was developed based on the Yerkes-Dodson law. This law posits that peak performance happens when people experience a moderate amount of pressure.

According to this model, when we either fail to challenge ourselves or become overloaded with pressure, our performance and chance of success will decline. With this in mind, the key to social success is to approach social opportunities that will push us without taking us all the way into a place of panic. For those with acquired brain injury (ABI), this model can become a helpful tool for reintegrating socially back into society. 

The Real-Life Conversation Skills Video Course (part of the Real-Life Social Skills Academy) is a key growth tool for this process, providing users post ABI with concrete, step-by-step breakdowns of conversation skills, video examples of these skills being role-played as well as clearly defined challenges for practicing in the real world.

What do each of these zones look like?

Comfort Zone

The comfort zone is characterized by familiar activities or social interactions that are routine for us. Examples might include: waving hello to a long-time neighbor, talking with family members around the dinner table or joking around with familiar classmates/friends in the cafeteria. 

These interactions may not be the simplest to an outside observer, but they are ones that we have done many times and are confident and comfortable with. We feel calm and competent when we are engaged in these activities or enter conversations with these people. 

For most of us, comfort zone activities and interactions will form most of our day to day lives. This is typical and expected. Comfort zone interactions are safe, reassuring and recharging. They are very important for our mental health and well-being. However, it can be a red flag when we find ourselves or our student rarely or never venturing outside of our comfort zone socially. 

Unfortunately, for many of those with ABI, even activities that previously fell in the comfort zone may become more challenging. Their comfort zone may “shift” and a new level of social expectations may need to be established. 

Stretch Zone

When we are in our stretch zone, we challenge ourselves with activities or interactions that are outside of our usual comfort zone. For instance, we may go up to a less familiar neighbor and say “hi” or we might sit with a new group of students in the school lunchroom. 

Many of the challenges in the Real-Life Conversation Skills Video Course are geared to provide stretch zone opportunities for users, in order to gradually push themselves into new social territory. 

In the stretch zone, we do not feel panicked and overwhelmed, but are able to step up to the challenge. We may even find a rush of extra motivation and enthusiasm. Often, we need to practice developing a mindset of persistence prior to engaging with activities or interactions that fall within the stretch zone. Otherwise, we may find ourselves bailing out whenever things get a little unfamiliar or uncomfortable. This can be especially true for those with ABI, as activities or social interactions that were once fun and simple may become much more difficult and exhausting.

Panic Zone

When we are in the panic zone, we become completely overloaded and overwhelmed. We are swamped with fear and may enter a fight, flight, or freeze mode. We run on high alert. Being in this zone for extended periods of time often negatively impacts of sleep, mental health, and energy levels. 

When we find ourselves feeling this way in a situation, it may mean that we overloaded our current skill capacity. It would likely be best if we take a step back. Socially, this may mean that we entered a situation or interaction that we were not ready for, and as a result feel trapped or overwhelmed. Social anxiety often manifests because we placed ourselves into difficult or unfamiliar social situations without enough practice or skill-building beforehand. 

The Real-Life Conversation Skills Video Course aims to help those who take the course gain knowledge and watch examples of various conversation skills being utilized with the aim of reducing anxiety in users to help them be more successful in social situations when they venture into the real world. The course is one tool that can help users with ABI avoid entering the panic zone in various social settings, as they will have already seen examples of how to navigate these situations and have a step-by-step plan for how to approach others. 

Check out some of our Brain Injury resources here!

Factors to Consider

Social Skill/Practice Level

Reflect on how much we have practiced various social skills prior to entering real life situations. Role-playing, video modeling, practicing with more familiar friends/family, (all of which are components of the Real-Life Conversation Skills Video Course), etc., can all be helpful tools to prepare us for stretch zone type social interactions. Social skills groups can also be helpful, safe, semi-structured places to grow in our social skills with peers, especially when we are relearning skills following an ABI. Many cities even have specific ABI support groups that one can join. 

Know Our Own Personality

Consider our own personality type. Are we more introverted or extroverted? Do we do better in group situations or 1:1 conversation? How has our personality changed post-ABI? What types of topics would we enjoy talking about with others? The more we know about ourselves, our own strengths and personality type, the more confident we can be entering into a new social situation.

How Are We Feeling Today?

Are we well-rested or fatigued? Are we feeling extra anxious today for some reason? How is our mood? Mood and fatigue levels can be heavily impacted by ABI, and these are all important emotional factors to consider before jumping into a stretch zone social activity.

How Challenging is the Social Situation?

Also, it is important to be aware of the complexity of the social situation. This will vary for every person and is often based on the previously discussed factors listed above. Of course, no single video course or peer group can prepare someone for every complex social situation they might encounter. Nonetheless, the Real-Life Social Skills Video Course does incorporate a variety of common situations that one may encounter in real life. The course is geared to be realistic and aimed for a target audience of older students and adults who may have had an ABI – avoiding many of the “kiddy” trappings of other social skills-focused curriculums. 

And of course, it is important to remember that what is incredibly challenging for one person may be routine for someone else. In general, though, being around fewer familiar people and within a larger group will be more challenging. Specific work or school groups can also have special rules that are more difficult to navigate. The Real-Life Conversation Skills Video Course will help you learn or relearn many of these hidden rules. 

Keys to Finding the Stretch Zone

1) Be aware of when you’re stuck in a social comfort zone and be willing to challenge yourself. 

2) Have a social skills coach, therapist, friend or other person in our lives as an outside perspective to provide us with encouragement to push ourselves forward socially.

3) Order the Real-Life Conversation Skills Video Course or a similar course in order to relearn, review and gain helpful skills in advance of entering more challenging real life situations. 

4) Start out small and take baby steps. Try one new social opportunity each month – whether joining a new ABI support group, signing up for voice lessons, taking a community art class or anything else that is new and intriguing. The possibilities are endless. Start with something small and build up. For instance, your first stretch zone activity would likely involve meeting one new person or a small group rather than presenting a speech to an audience of 500 people. 

Acknowledgement:

John Williamson, M.S., CCC-SLP

Owner, Lead Therapist at the Social Skills Laboratory, PLLC
www.SocialSkillsLab.com
www.RealLifeSocialSkillsAcademy.com

Certified: PROMPT Level 1, SCERTS Model, Pivotal Response Treatment (PRT) Level 1, Pro-ACT, Non-Violent Crisis Prevention (CPI), LSVT, Youth Mental Health First Aid, Positive Discipline, LiPS by Lindamood Bell

Trainings: Social Thinking: Taste of Our Providers’ Conference, Unraveling the Mysteries of Social Communication Skills for Students with Autism Spectrum Disorder, Using iTechnology as Evidence-Based Practice to Meet the Learning and Behavioral Needs for Students with Autism Spectrum Disorder,  Social Thinking: Informal Dynamic Assessment and Core Treatment Strategies, AAC Across the Lifespan, Sensory Processing Disorder Symposium: Evidence-Based Practice – Evaluation and Treatment of SPD, Innovative Aphasia, AAC in Medical Settings, Special Education Law in Washington State and many more.

About Me:
I have extensive experience working with children across a wide age range with a variety of communication-related challenges. Previously, I worked at Lakeside Center for Autism and Neurodevelopment (now I-CAN) and at Children’s Institute for Learning Differences (CHILD) before starting my own private practice.

I am originally from Washington State and got my master’s degree in Clinical Speech-Language Pathology from Northern Arizona University before moving back to the Pacific Northwest. I also have my Certificate of Clinical Competency from the American Speech-Hearing Association (ASHA).

I am passionate about working with students and adults who have social skills challenges as well as other speech and language-related difficulties!

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Living with Brain Injury: A collection of insights we wish we had known along our journey with brain injury

“My brain is scrambled”, my husband sighs in frustration.

This is my cue to pause, step back, and reassess. Picturing Kyle’s overstimulated thoughts as a messy breakfast item is his lighthearted way of reminding me, “hey, I’m in here. I just need a little help sorting me out”.

While I would like to believe my work as an occupational therapist (OT) would make me a model spouse to a person living with a brain injury, I would be mistaken. Through assisting my husband with navigating living with a brain injury, I have gained small insights into caregiver burden, and grief that all the knowledge and training in the world cannot fully prepare you for.

Kyle is living with post-concussion syndrome (PCS- or mild brain injury) because of several concussions sustained during his time as a collegiate platform diver. PCS is a cluster of persistent symptoms a concussed person may experience, such as: problems with attention, memory, fatigue, sleep, headache, dizziness, irritability, or changes in mood or personality” (Kolakowsky-Hayner et al., 2010).

For those who experience a mild traumatic brain injury (mTBI), about 10-15% will experience any number of those listed symptoms chronically. Because these people may appear “normal” after initial recovery many struggle to manage the daily tasks and roles required for success in their environment.

In his junior year of college, Kyle sustained three concussions within roughly three months.

Initially he thought he had recovered, however, the repeated trauma within a short time frame left him with difficulty thinking, severe migraines, sensitivity to light, emotional instability, and difficulty managing his basic self-care. Life changed drastically. He medically withdrew from classes, moved back home for support, and began working with a concussion specialist. After several months of treatment and rest, he was able to return to school to finish his degree.  We got married, and started a new chapter in Tampa, FL. We both believed the worst had passed and things were “back to normal”.

As life progressed, Kyle still endured occasional migraines, light sensitivity, and difficulties managing stress, but he was able to maintain a full-time job, a new role as a spouse, and engage in several sports related hobbies. Over a year after his presumed “recovery”, things began to change. The migraines became more frequent, his stress management was at an all-time low, and his short-term recall was getting increasingly worse.

For example, he would stare at the oven for several minutes knowing he planned to heat dinner – but was unable to turn it on to get started. Headaches and constant ringing in his ears would keep him awake for hours at a time, and sleep was very hard to come by.  He was emotionally withdrawing from daily challenges and would often catastrophize the most basic of problems. Fear that this was going to be our ‘new normal’ began to overtake us…

We decided to seek out medical management from a concussion specialist…again. After the initial shock of realizing we would likely be “managing” Kyle’s symptoms instead of “curing” them, we came to the realization we could make some small changes in our daily roles, routines, and communication to make a big impact on our quality of life.

In addition to Kyle’s regular visits to his concussion specialist, he also utilizes an acupuncturist, chiropractor, and photobiomodulation (lasers!!!) therapy for ongoing management of his PCS. At home, we began focusing on simplifying daily routines, lowering stress, focusing on overall wellbeing, and prioritizing communication. We were able to persist, but not without the help of our family, friends, and professionals who offered their continued support and guidance.  It truly does take a village.

Nearly a year later, Kyle is continuing to work full time, play recreational sports and is a proud new dog dad. While we continue to evolve, we have grown throughout this process (and probably will continue to).

We have morphed into better listeners, more supportive partners, and are increasingly empathetic towards the challenges of others.

We are strong in our belief that if we keep an open mind and positive outlook, we can continue to be successful in managing the daily challenges that Kyle’s PCS throws at us.

With all of this in mind, Kyle and I would like to share some of the lessons we have learned along the way. Our hope is to encourage, inspire, and empower persons with BI, their caregivers, and the professionals who are fortunate enough to work with them.  There is space within BI for joy, connection, humor, and growth. According to Kyle, “you can always see the light in every situation… even if you are photosensitive”.

Tips – and a few guiding thoughts:

Slow down

“It’s hard to explain that you’re confused about why you’re confused… it doesn’t make sense.”  During the several times discussing points for this piece, Kyle would mention how hard it is for him to explain his symptoms, their impact, and the toll they take on his relationships, roles, and self-worth. Our advice is to slow down. Slow down when things get tricky… when your person with BI becomes overstimulated, stressed, and runs into a “mental block”.

I often tell patients and family members to double the amount of time you usually need for a task after injury. You must drastically reduce your commitments, expectations, and daily goals to provide the time needed to best serve your person and facilitate success. This takes lots of practice and even more patience.

I particularly struggle with this since I like to set goals far above what even a neurotypical person may be able to complete in a day. Through mutual patience, reminders, and constant support from our loved ones, we continue to work towards a healthy balance of getting what needs to be done finished while pacing things to allow Kyle to be successful.

Healing is not linear

Healing ebbs and flows.  One day may be 2 steps forward, while others may be one step backward. Kyle is at his best when he maintains a sleep schedule, exercises regularly, and has assistance with managing his daily stressors. I double check schedules, appointments, and provide reminders for various self-care things Kyle needs to do to keep moving forward.

With time, Kyle may need less support and oversight to be successful. One of the many things I do as a caregiver is to adjust the routine as needed to ensure Kyle’s success during the day. Each person’s brain is different, and every injury presents with unique characteristics that continually evolve as time marches on. What works for us may not for you, and that’s ok! A few strategies that have helped us along the way include checklists, identifying triggers that intensify symptoms, and limiting screen time.  Try ‘no TV Tuesdays’… it’s wonderful.

Ask questions, and advocate

Because people with BIs don’t have obvious physical signs, it’s important to recognize and advocate for your person. As Kyle’s mother best describes, “You feel completely discounted because people can’t see your injury. If you had crutches, you would give them a break.” While you do not need to go around shouting who has a BI from the rooftops (HIPAA, anyone?), it’s important that you educate, advocate, and openly discuss the challenges associated with BI as appropriate.

This could look something like researching public spaces with less stimulation or visiting at quieter times to reduce stress potential. It may also look like asking a restaurant manager for a quieter table, a doctor to provide a written copy of medical advice, or a cashier to be patient as you may need extra time to pay. In general, most of us want to be helpful to others and people do best when they’re well informed.  In those spaces that are not particularly comforting for a person with a BI, ask for accommodations – it can’t hurt!

It takes a village

Whether it’s a support group, online forum, or good friend who commits to regular coffee dates, finding support is key. Kyle finds support in mentors, his fishing and hockey buddies, and his most trusted friends. As a caregiver, I find mine in my sister, co-workers, and in reading other’s stories of overcoming and living with brain injury. Together, we find great comfort in our parents, spirituality, and our pets.

My mother-in law, Valerie, has been supporting Kyle’s recovery from day one. Her insights and encouragement help me to refocus on the important things by using her daily mantra, “we are choosing joy today”. Whatever support looks like to you and your person- find it, lean into it, and stay committed to investing in it. These will become the communities you cry with through hard moments and celebrate the victories.

Same team

It is easy as a caregiver to feel you need to micromanage each step of your loved one’s life. While this comes from a loving place, it is easy to get lost in this role and almost forget what your original purpose in the relationship is. Kyle often reasserts his independence in tasks when I rush in to “fix it” before he has even struggled. When it’s possible, let them try.

Allow self-efficacy – partnership and independence flourish within reasonable boundaries. We are thankful Kyle has recovered to the point of being able to work, drive, and function successfully within his roles with only minimal assistance, but we understand this may not be everyone’s story. We aren’t advocating for you to stop helping or supporting your person as needed, but we would like to challenge you to set goals toward the restoration of meaningful roles. This could look as simple as asking them to help fold the laundry, or as complicated as picking up milk on the way home from work. Show gratitude for the help they provide and remember you’re a team.

The ability to succeed alongside you will promote connection, confidence, and healing in all parties involved.

Put your own mask on first

You cannot help someone when you are not healthy. I cannot stress this one enough.  It’s hard to hear, and even harder to implement. As an OT, I work with family members and loved ones towards realistic plans for managing the burdens that come with caregiving. While caregiving can take any number of forms, one thing everyone has in common is the risk of burnout.

Initially when Kyle’s symptoms began to worsen, I put my own needs on the backburner.  I neglected both my physical and mental health and was not in a good place.  Several months ago, I went back to counseling to help me reorganize organize myself. We began our health journey, disconnecting regularly from screens, and decompressing from daily stressors. As a result of prioritizing my own health, and implementing one small change at a time, we are both better. I am better able to handle my own challenges while supporting his progress. Take the walk. Drink your water. Practice self-care and love. Ask for help when needed.

While living with brain injury is not something we would wish on any person, we are thankful for the lessons we have learned along the way. Finding joy and intimacy in each small moment and accomplishment has forged greater meaning in our relationships with each other and our support teams.

As Kyle continues his healing journey, we aim to grow in compassion, resilience, and understanding. We hope something from this piece may be helpful to you. We encourage you to use what is helpful to you and throw out whatever does not serve you.

Acknowledgement

This piece has been written in collaboration with, and inspiration from, my lovely husband Kyle:  who daily manages PCS… and being married to me. Both he does beautifully.

Hope Kennedy Blackwood;  MOT, OTR/L 

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CITATIONS

Kolakowsky-Hayner, S. A., & Reyst, H. (2019). Glossary. In The Essential Brain Injury Guide, Brain Injury Association of America.