Recently I was recalling the Canadian prairies segment of the Sea to Sea cycling trip. We had been experiencing headwinds and crosswinds at a much greater rate than tailwinds.
Each morning the chaplain had prayed for favourable winds to help us reach our next campsite without encountering undo hardship. We had arrived the day before in Chaplin Saskatchewan having battled headwinds and crosswinds on what had been a long haul.
That evening we welcomed a lone, self-supported cyclist to join us for supper. He gladly accepted. Just one of his many pleasant surprises he had encountered after several years of enjoying life on the road.
The next morning our chaplain was ready to share a prayer with the 70 cyclists. He paused for a moment to contemplate the situation. How was he going to pray for favourable winds. We were cycling east while our guest was going west. We had a long day ahead of us to get to our pre-book campground. So, what to pray? The chaplain shared his prayer as a general petition for favourable winds and said, “We’ll let God figure it out.”
As this prayer was offered I was squirming a bit and feeling uneasy. Praying for favourable winds felt like we were sending God a Santa Claus gift list. It’s bringing our narrow desires for the day before God. Our narrow desires when there are more significant matters to pray for.
Being in a group of 70 cyclists, it wasn’t essential to have a tailwind. Rather than trying to bias God to send us favourable winds, maybe we should be praying for the cyclists as a group. In praying for success for the cyclists let’s pray for a spirit of cooperation and teamwork.
As a group we had the opportunity to cycle in a pace line. By riding in a tight line of, for example, six cyclist each cyclists would pull for a minute or two and then have an easier time drafting while the other five cyclists took their turn at the front of the line.
On the other hand, the lone guest would be out on the road with simply his own means to reach his goal for the day. He did not have any team members who could work with him.
The other side
Then I come across the verse listed below.
23 In that day you will no longer ask me anything. Very truly I tell you, my Father will give you whatever you ask in my name.24 Until now you have not asked for anything in my name. Ask and you will receive, and your joy will be complete.
John 16:23-24New International Version (NIV)
So what does it mean to ‘ask in my name’ when praying? How does that create a context for what we ask for? Is anything too trivial to ask for in prayer?
I don’t have additional insight into those questions. Yet somehow, I think we need to consider whether our prayers are self-serving or whether we pray in such a way that the answers to those prayers bring honour and glory to God.
In the end I think we should have prayed for the needs of the lone cyclist. However, did we know him well enough to determine his needs.?Maybe a headwind was fine because he hadn’t intended to go very far that day.
If nothing else, the chaplain’s prayer in Chaplin Saskatchewan did get me thinking about how we pray and what we pray for.
Had an invitation to visit a friend for his birthday recently. Since it was Sunday morning I thought it would make sense to make the 45 minute drive and attend his church.
The church, not being a typical protestant church, meets in New Stages Theatre. Rather than the usual parking lot with an obvious front entrance this worship space was in the downtown area. After making two U-turns I located the correct building. Then I made sure it was actually free parking on Sunday. I made my way to a somewhat obscure entrance. I say obscure because there was no signage and the entrance was on a different street than the official address.
On entering the building I had a choice of climbing the long stairway or riding the elevator to reach the main floor.
I exited the elevator as it opened into a reception area. There were a few people helping themselves to some coffee and a snack. I noted that the bar at the far end of the reception area was closed. (wrong day I guess.)
I walked around, checking out the layout of the space and briefly acknowledged a few people who greeted me. I didn’t have the energy to engage in conversation but knew how to be brief but reasonably polite. I wandered into the worship area with its subdued lighting and sparse setup. There were a few microphones, a music stand with a laptop and a screen that read “Eschatology”. I assumed that was the topic for the day. There were a few parishioners who had already made themselves comfortable in the cushioned seats.
I walked back to the reception area to help myself to a cup of tea and a snack. As my friend was ready to enter the worship area I decided to follow. As I approached the seating area I became acutely aware that my sensory loading had been building. In the ten minutes since entering the building my ability to function had gone into a quiet but steady downward spiral. I stepped out for a few minutes. When I returned I sat off to the side in the shadows and out of sight.
My attempt to be inconspicuous was briefly interrupted when the pastor walked over to me and welcomed me to the service. I nodded a polite acknowledgement.
In the next 15 minutes my sensory overload settled down enough that I could take in some of what was happening. After focusing on the worship service and participating in the singing, things seemed to be going better. The small group of people and the single guitar made the singing have a settling effect on me.
Shortly after the singing was done I wasn’t able to take in anymore. My earplugs which are meant to tone down sounds had a cocooning affect. I ended up napping for about 20 minutes. (Did I mention the seating was comfortable?)
As the worship time ended I knew I was in no condition to socialize with anyone. I quickly made my way down the long flight of stairs and waited at the bottom till my friend was ready to head home.
The worship experience totally blindsided me. The week before was the first time in almost three years that I had actually made it through the whole worship service. It was a real accomplishment which left me with a stronger sense of inclusion. The singing last week had not pushed me to a point of sensory overload. I had been able to focus on the different parts of the liturgy. I had come away from there with sense of achievement.
So why had today’s experience put me into sensory overload? Yes, and most of it happened before the worship time even started? It wasn’t simply a matter of making it only part way through the service before I needed a break. Needless to say, the experience was a disappointing setback.
I have been advised to consider the broader context when I experience a set back. Sensory overload doesn’t just happen. There are certain experiences that will bring on sensory overload gradually. There are other experiences that will suddenly trigger sensory overload. I should point out that the 45 minute drive to the church did not meet either condition for bringing on sensory overload.
The broader context would be to look at what was happening in the days leading up to the Sunday. What did I do Thursday? Did Friday’s activities contribute? Did Saturday’s activities exacerbate my sensory loading? Had there been time to reduce some of the neural fatigue the accompanies sensory overload?
In hindsight I had been processing two emotionally charged events that added significantly to my emotional sensory loading.
On Saturday I attended the November 11 Remembrance Day ceremony. The last two years I had attended the ceremonies in the city. Last year I had fared better during the hour long ceremony than I had the year before. (I’m seeing gradual progress.) This year I attended the ceremony in our hamlet. The cenotaph is around the corner, less than a kilometer from home. Being a small hamlet the Remembrance Day ceremony ran much shorter than in the city.
Despite the shorter ceremony, the remembrance of lives lost and the loss experienced by so many families set me back more than I expected. The local cenotaph is more personal. I counted over 300 names inscribed on the monument, representing soldiers who died in World War I and II. The names are soldiers from our township who served. While the current population is 18,000, it would have been less than a quarter of that at the end of WWII.
After the ceremony I drove home and did some yard work for a couple of hours. Cleaning up and getting things put away is a physical activity with low cognitive demands. Along with being outside that should have helped reduce the sensory loading somewhat.
On Friday I had lunch with some former colleagues. These occasional lunches are enjoyable and an opportunity to catch up on what people are doing. The setting is relaxed, with no one in a hurry to leave.
A significant part of Friday’s lunch was being a support for a colleague who had recently buried her spouse. Sharing in her loss and that of her young sons meant I would need some time to let some of my sensory loading dissipate. Biking home after the lunch helped bring some immediate relief. But I should realize by now that I need more than a rhythmic physical activity like a 50 km bike ride to properly recover.
Planning and Scheduling
In hindsight, it was obvious to me that I had scheduled too many activities on consecutive days that contributed to my sensory loading. If I were to do it over, I would schedule at least one recovery day between each event. That’s how it would work in an ideal world.
In reality I did not know what to expect at the Friday lunch. I did anticipate the sharing of loss at the Friday lunch, but that definitely wasn’t a reason to stay away.
However, I have been reminded of the need to plan for the worst case scenario. Well, that’s fine, but the next day, Saturday, was Remembrance Day. I thought it would be a dishonour to the families of the fallen soldiers to not attend. Besides I had modified my attendance by going to a shorter ceremony. In that way I had made accommodation hopefully reduce a worst case outcome. I realized afterwards that shorter doesn’t necessarily reduce the emotional impact.
Even though I had two emotional events in two days I didn’t realize what impact it was having on me. I had done outdoor physical activities in between. That has always been helpful in reducing my sensory loading. So, how could I have anticipated that my worship time would expose my sensory overload? My best guess it to realize the accumulative effect of back to back emotionally charged experiences. Why is learning new things so hard to put into practice?
Nevertheless, I decided to visit my friend anyway. I wasn’t just a casual visit, it was a birthday, not something you can take a rain check on.
The visit required some significant accommodations. I managed to find a quiet place. I managed to nap for close to an hour. After my nap I chose a room where there were only a couple of people.
At first I participated by simply nodding and acknowledging the conversations. Gradually I was able to participate and initiate conversation.
I was able to enjoy the visit because my friend understands my needs. No one was insulted that I needed a nap. No one pushed themselves on me to engage in the conversations.
In the end I was glad I not abandoned the idea of visiting. It would have been lonely and disappointing to have gone home rather than visit. It’s not always an easy call to make. It helps when I am with people who know me and have shown understanding in the past.
It’s not a matter of “hit and miss”. The recent experience was a clear reminder that I need to pace my self and monitor my sensory loading. Most significant is the cumulative effect of back to back experiences. Even if my body didn’t give me signals, previous experience should have alerted me. But then there is always the somewhat unreasonable hope that my ability to handle sensory loading has significantly improved.
You can’t rush recovery, just like “you can’t rush good wine.”*
Every day when I arrived at work I would park my car near the newspaper recycle bin. I would take a minute or two to clean up stray papers that had missed their target namely the paper recycle dumpster.
One particular morning I nonchalantly opened the lid to throw some paper into the bin. Instead of seeing newsprint and bags of shredded paper I found myself looking at a body. A body with an ashen complexion. A body with disheveled clothing. My first thought was, “This is a crime scene or the unfortunate death of a street person death”.
A moment later I was startled to see the body move. Slowly a thirty-ish young man sat up. My puzzlement faded into relief. Relief that this was not a crime scene.
On second look I had the impression that the bags of shredded paper might actually be comfortable. Definitely more comfortable than many places I’ve seen street people spend the night.
I was rather disoriented and so the only words that came out of my mouth was, “You don’t need to hurry. If you want to sleep for a while, go ahead.”
Instead he quickly scrambled out of the bid and headed down the sidewalk hoping to avoid any extra attention.
I realized later that it would have been more appropriate to have offered him a cup of coffee or my lunch to take with him.
Recently I co-presented to a group of teachers to share some of my experiences with living in the world, being neurologically atypical. I touched on experiences which would relate to classroom experiences for neurologically atypical students. In doing the presentation I was aware of my challenge of fielding questions teachers might have.
It’s beneficial to structure time for questions so the presentation could be more effective. At the same time, my ABI (acquired brain injury) makes thinking on my feet a real challenge. It’s a skill needed to manage and respond during a question and answer block of time.
There was one question to which I gave a very ineffective response. So I will share here a more effective answer. I realize that it is not unusual for a presenter to wish they could go back and rephrase some of their responses. Likely not to the same degree that I feel the need.
Question: When a student is uncooperative how can a teacher determine whether the child is simply coping with their neurodiversity challenge or whether the child is being defiant?
Initial Response: You don’t always know. As a teacher, as you work with a student you will hopefully gradually figure it out. Hopefully you won’t cause any serious misunderstandings with the student and undermine their trust in you.
Thought out Response: The traditional response to a student who is uncooperative is to give some reasonable reminders and then move into more punitive measures to coerce the student to cooperate within the classroom.
My way of addressing student concerns gradually changed. As I developed in the art of teaching I had settled on one simple classroom rule: Do not disrupt the teaching and learning process. What I found to be most effective was to have the student choose the corrective measures when they were ‘disrupting the teaching / learning process’. Initially when I would ask the student what measures would be helpful I would get various boring responses.
Make me stay in for the whole recess time
Make me write lines 25 or 50 times “I must cooperate in class.”
My response to their suggestions would be, “And how will that help you?” Initially they would not have an answer for me. So I would ask them to suggest something that would be helpful. In the end I would ask if a note on their desk with an appropriate reminder would be helpful. If the student had been interrupting other students the note might be “I must wait my turn to talk”.
Once students became familiar with my approach, they understood that it was their job to come up with workable solutions. At times students became quite creative in their strategies.
When students had to decide their own corrective measures they would own it. They were holding themselves accountable.
This method was not intended to be punitive. It was a means to help a student identify what their challenge was. If their challenge was one of attitude, they were committing to working on it. If the behaviour was related to their neurodiversity they became a partner in exploring the means and measures that could help them overcome their challenges or find suitable accommodations.
The accommodations might be a matter of allowing a student to leave the classroom for a break when they needed it. The accommodation my be an arrangement to work in a different space. There are any number of adjustments that can be made.
It was my intent to have the student become reflective of their own actions and be an active participant in the process. This was as much part of teaching students as learning the skills outlined in the curriculum. Both take time to learn and reinforce.
And so, in summary, to respond to the original question, it doesn’t really matter whether the student is dealing with an attitude issue or whether they were coping the best they can because of their neurodiversity. The focus is on helping the student.
The Challenge of ABI
My better answer, if you were to ask me, came a few days after the teacher workshop ended. My ability to problem solve has been noticeably affected by my ABI. That doesn’t mean I am not able to resolve situations or answer questions. It simply means I need more time to find a solution. The more challenging questions and situations will quite often require three or four days before an effective response or solution presents itself. At that point I’ll think, “Now why didn’t I think of that sooner? It just makes so much sense.”
I guess I need to accept that my brain is synchronized to a slower internal clock. And that’s okay.
Recently I committed to addressing a group of educators. As I mentioned in a previous post, I was torn between turning it down and going ahead with it. On the one hand going ahead with it made me vulnerable to the possibility of failure. On the other hand I felt compelled to advocate for atypical students and the challenges they face in a neuro-typical classroom.
Compelled to move ahead
I chose to share some of my observations of students I had taught during my 25 years as a classroom teacher. I recognized students over the years for whom I had made accommodations due to the way they presented themselves. While I recognized some of their behaviours as their attempt to cope, I had no idea to what extent their behaviours masked or gave indications of their struggles.
In my learning to live with ABI (acquired brain injury) and therefore experiencing life as a neurologically atypical person, it has prompted me to think back on some of the undiagnosed, neurologically atypical students in my past.
Tempted to back out
At the risk of failure, I was reluctant to move ahead with sharing my observations. First of all, an hour and a half presentation was beyond my limits to remain cognitively engaged.
I had questions about my ability:
what if I experience sensory overload?
what if the delivery is incoherent?
how well will I be able to follow my notes?
I had other reservations related to the limitations that I experience with ABI. I’m often searching for the right noun, while verbs don’t elude me. I easily lose my train of thought. Stray thoughts send me out on tangents not directly related to the topic.
Planning, planning and some more planning
In working with my OT (occupational therapist) I was reminded to structure the presentation to match my limitations. In addition to that it was important to have a plan B. What if I couldn’t finish the presentation? Design the presentation in a way to minimize my own sensory loading.
I failed to minimize my sensory loading in part by not limiting the size of the group. But the larger group might have doubled my resolve and increased my focus.
The most important part of the planning was to partner with a co-presenter. By brainstorming, identifying the key points, recognizing what information and experiences were relevant, and settling on a comfortable structure and flow, hopefully the central theme would come through clearly. And most importantly, that attendees would benefit.
The next day an educator stopped by to see me. She told me that attending my workshop is what got her through the two day convention. Having shared my limitations as part of my presentation gave her the emotional space to give herself permission to acknowledge her limitations. That allowed her to modify her participation and choice of activities without being apologetic about focusing on her own needs.
I was reminded last summer that as a leader, when you share your own limitations or vulnerabilities, you give others permission to begin to push their own mask aside.
For me, the desire to advocate for struggling students made me push my own misgivings aside and focus on a need in others. That convinced me to push ahead. By acknowledging my limitations I maintain my integrity as an educator, yet connect with others on a personal level.
So often I prefer to be alone but I don’t want to feel left out. This conundrum is one of the challenges of living with ABI (Acquire Brain Injury), though probably not limited to those who live with ABI.
Living with ABI can become a very isolating way to live. By that I mean, saying no, or passing on opportunities to participate in activities with others when I realize my sensory loading is reaching a point where I add to it at my peril.
The Paradox is real
When I engage in prolonged physical activities, such as cycling for a three to five hour block I know I am committing to a recovery routine that I should not ignore. That means that as much I want to join in I will have to forego activities immediately following my vigorous activity.
When I am engaged in a discussion with a half dozen people I know my internal timer is counting down. As I am busy listening, reading body language, assessing people’s tone of voice, formulating responses to what I’m hearing, finding a socially appropriate way to interject, my neural fatigue is rapidly building. Even if I find the discussion very engaging at a certain point the internal timer runs out. I want to stay with the discussion but at the same time I want a quiet place to regroup.
When I’m at a music concert it’s does my heart good to take in the music, the lyrics and the energy of the venue. The music can be totally captivating, bringing back wonderful memories or creating a memorable experience. At the same time I know that at some point, maybe 30 or 45 minutes, and sometimes much sooner I will reach a tipping point. The captivating music will suddenly become a memorable failure, a start of a slow recovery in which I crave solitude while missing the company of family and friends.
When I volunteer at the nature center close to home I need to remain self aware. The last time I was there I had only worked for about three hours but was totally exhausted. Being introduced to the project on my arrival was neurologically challenging because of my lack of mental flexibility. Sizing up the project for the day, coordinating with two other people, and doing something unfamiliar all contributed significantly to my sensory loading. While I enjoyed doing the project and wanted to see it completed, after three hours I was longing to get out of there and find a quiet place.
This week I have the opportunity to address a room full of teachers. I have offered to share my own experiences of living with ABI, living as a neurologically atypical person in order to advocate for neurologically diverse students hoping that more teachers will develop a sensitivity for their needs.
The paradox of wanting my own space yet feeling compelled to share is staring me in the face. I am not sure how to prepare, to avoid sensory overload while doing an hour and a half presentation in a room full of people.
I know I need to ensure that my sensory loading is at a low level at the start of the presentation. That means I need to watch what types of activities I choose to do in the two days leading up to the presentation. Taking in an extra bike ride or two would be helpful. Engaging in socially or cognitively demanding activities of any kind needs to be kept to a minimum.
I know I need to ensure that my sensory loading is at a low level. I hope that booking a motel and arriving a day ahead of time will give me time to shed the sensory loading of driving in a car. Or maybe I should take the extra day to cycle the 160 km to the event.
In order to manage my sensory loading while addressing a room full of teachers I need to be mindful of the structure of the presentation. While I would normally consider it conducive to allow for questions during the presentation, I am aware of the extra demands that will place on me. With my problem solving skills being severely compromised, fielding questions would be counter productive.
In order to manage my sensory loading it’s important to manage my level of stress and anxiety. Most people experience a measure of anxiety when addressing a room full of professionals, or non-professionals for that matter. I have conscripted a co-presenter who is scheduled to do part of the presentation. In addition to giving me a break when she presents she will be available to back fill what I am not able to complete.
The paradox of being alone colours much of what I do. At the same time I make a point of pushing forward, setting goals so that I don’t end up feeling that I’m living in isolation.
To resolve the paradox of being alone, my aim is to avoid isolation, by seeking solitude. Finding activities and finding places that refresh my being, that helps me manage my neural fatigue, that is my idea of a place of solitude.
When I am able to experience a measure of solitude on a regular basis, that gives me the energy and endurance to reach out, to share and not slip into a place of isolation. It’s not an easy balance to achieve. It requires increased self awareness, an understanding of my limitations and setting worthy goals for how I want to participate in my community.
Many hands make light work. If everyone could take a few minutes and pitch in, the work will be done in no time. We’ve all benefited from this type of sensible advice.
That’s not just practical advice, it also builds a sense of camaraderie. That all rings true unless you are dealing with ABI (Acquired Brain Injury). Since my ABI the opportunity to work with someone else will usually add more demands to my day. At time it seems easier to be a recluse.
Working on something alone makes it less likely that I’ll develop neural fatigue. Help is great. However, working with a helper means there are a variety of social and practical considerations that need to be managed.
When is comes to completing smaller jobs I have always appreciated the opportunity to work with one or two other people. At times it’s the best way to get through a mundane task. Even making it enjoyable.
Assessing offers of help
Now a days, when I receive an offer of help, to simply lend a hand I’m inclined to decline the offer. It’s not that the offer of help makes me feel less capable. It’s just that things quickly get complicated. If on the other hand the offer of help is an offer of taking on the job, I am quite likely to accept it. I’ve learned to delegate things that I can’t complete in a timely manner.
In the last while I’ve had offers of help. An offer to help me pitch my tent – I declined. An offer to help me install a coat rake (for which it seemed I needed three hands) – I declined. Too proud? – no. Too complicated to coordinate.
Often I lose more than I gain by accepting an offer of help. Simply put, I will be more exhausted if someone helps me than if I do it by myself.
When I work alone it is cognitively less demanding; I don’t need to explain how I want to do it. I don’t need to coordinate my efforts with someone else. I don’t need to observe and explain changes in the execution of the job.
When I work alone it is socially less demanding. I don’t need to pay attention to tone or body language. I don’t need to assess how much to explain. Explaining too little can be just as annoying as explaining too much. I don’t have to match my pace to that of my helper.
Working with a helper brings into play a level of multi-tasking. What would have been a simple job, now becomes cognitively more demanding and socially more complicated. This invariably leaves me more exhausted.
Others with ABI have a similar take when working with a helper. For some there are other considerations.
My friend tells me he needs to work alone so that he doesn’t make mistakes. This he finds particularly important when he is baking. Even though he has done the same recipe countless times, whenever he tries to bake with a helper he will miss a step. One can appreciate that with baking a misstep will more likely spell a disaster rather than invent a new recipe.
Making it work
That doesn’t always rule out doing things with someone else. Often enough there are tasks that involve a simple routine. When I was sorting and cleaning our crop of garlic, my four year old grandson was glad to help. He had his part in the process. At the same time, it was relatively easy to monitor how he was doing and make the necessary corrections if he got it wrong.
This is just one more area of my life in which I am learning to be mindful. Rather than just accepting or out of hand rejecting an offer of help, I need to pause and weigh the benefits over the extra demands it will put on me.
Having shared the challenges of receiving help, there is a different dynamic when I offer someone else some help. In many ways this can be easier. Knowing my own limitations I will first ask for an overview of what needs to be done and how the job is to proceed. I will then explain what accommodations I might need. If the job involves processing too many instructions I need to find a way to simplify it. If the job requires some concerted focus, I will suggest the need for some regular breaks or a change in activity after focusing for 20 to 40 minutes.
The benefit of being monitored
What I have appreciated the most when helping someone is having them check in with me. Several of my friends are aware of my limitations at a higher level of understanding. They will check in with me and seem to know when to ask me how I’m doing. That helps me with my mindfulness, since it’s so easy to get caught up in an activity and just focus on getting it done.
The nuances of living in community while living with ABI has a way of bringing out the best in some people. I have had people give me a heads up when something is about to happen that will negatively affect me. Experiences like these reinforces for me a sense that I’m not alone in adjusting to life with ABI.