From Les Mis to Come From Away

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Visiting St. John’s NF – having come from away

Just over four years ago I attended a local performance of Les Mis. That was a few weeks following my injury which was eventually labelled as an ABI. (acquired brain injury). At the time I was struggling to hold onto my job trying to at least work half days and gradually failing at that.

I had no idea what effects a musical performance would have on my ABI condition. About 15 minutes into the Les Mis performance I was dealing with sensory overload but having no previous experience with it, had no idea what was happening. I was in highly unfamiliar territory.

I was seated a half dozen seats from the aisle. Since I couldn’t leave inconspicuously I decided it was best to wait till intermission. I did what I could to hold out till intermission. By then I had great difficulty with my balance. I couldn’t talk or even formulate my thoughts. I was in tears. In short my brain was so scrambled I could only manage a bit more than the basics, just keep breathing. (That night it took a long time to figure out how to breathe and sleep at the same time. When I fell asleep my breathing would stop. When I drew a breath it would wake me up.)

I had just come through my first and probably my worst of many experiences of sensory overload. I found out later that severe sensory overload can trigger some serious medical issues.

Four Years Later

I recently attended a showing of Come From Away, a moving story of 7000 people landing unexpectedly in Gander Newfoundland as a result of the 911 events happening in the United States. This time I attended a performance knowing what factors would put me into sensory overload.

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Learning to speak Newfoundlander

The production on the day I attended the performance was billed for people with sensory issues. In general terms this would take in people who are neurologically atypical. This  could include people on the autism spectrum as well as people with acquired brain injury.

There were several accommodations that the theatre staff had made for attendees. If a person was dealing with sensory overload there were lounges available to provide a quiet place. An usher would remain available in the lounge. The lounge was equipped with a large screen so one could still watch the performance.

A special area was set aside so a person could be readmitted to the theatre without disturbing people near their original seat.

Some things were not described but I made some assumptions. I imagined the lighting would be toned down or the sound would be somewhat muted. I was wrong.

Before leaving home

The day we were scheduled to attend the performance I was not at the top of my game.  I spent an hour in the garden first thing in the morning but that didn’t seem to help much. I was feeling stressed, partly because of the number of things that had to be coordinated in course of the day in order to attend the performance.

We had decided to take a commuter train into the city to simplify the trip. We could avoid dealing with parking or the demands of driving in heavy city traffic. We did the 40 minute drive to the commuter train. The train took us to within a 10 minute walk of the theatre. It was a warm sunny spring day so that was also in our favour.

The Elgin Winter Garden Theatre

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Elgin Theatre auditorium and box seats

We arrived at the Elgin Theatre an hour before curtain time. This was part of the plan so as not to be rushed with any part of attending the event. We entered the theatre, had our tickets scanned and waited in the lobby near the snack bar.

From where I waited I could see people as they entered the theatre. I found it interesting to watch people entering the building. As they came in I couldn’t help wondering which people were there because they had sensory issues like myself. In many cases one could not tell whether the person was a caregiver or whether they had sensory issues. Or maybe some groups had no one with sensory challenges.

With many attendees there were indicators that the person was neurologically atypical. For some it’s the expression on their face. For others their gait as they walked gave some indication. With some there were indications in the way they were holding hands with an accompanying adult or two. For the most part these and other indicators tended to be subtle and rather inconspicuous.

With other attendees it was quite obvious that they were dealing with neurological issues. Seeing someone arrive with a caregiver pushing a wheel chair while making encouraging comments to the person being brought in. Another person was brought in by wheelchair having difficulty keeping their arms and legs calm. Others had difficulty walking. With some there was involuntary vocalizations.

Emotional sensory loading

Before the performance even began my sensory loading was ramping faster than I had hoped. Seeing the challenges that others are dealing with is hard to ignore. That combined with observing the dedication of the caregivers in making the effort to address their quality of life needs is emotionally overwhelming at times.

Had I attempted this a year ago the emotional loading would have put me into sensory overload and I would have had to remove myself from the theatre even before the performance began.

Once I was seated I realized the overt challenges that quite a number of attendees were dealing with would remain quite noticeable. The young man two seats in front of me would wave his hands over his head regularly. His two caregivers took turns helping him control his movements and reduce the distractions for the people seated near them. Another person a few rows ahead was noticeable moving up and down through the whole performance. There were a half dozen attendees within my line of sight that provided some level of distraction.

Additional Instructions

The theatre had made arrangements to have a prompter on the stage for the benefit of the audience. Just before the performance began he explained two signals that he would give at various times. If he put on his head phones that was a signal that the volume would increase noticeably. If he put his hands over his eyes that was a signal that there would be some lighting effects happening shortly.

It was at this point that I had an inkling that the performance was not modified to give a reduced sensory impact. Rather, the theatre staff was there to assist anyone who needed to remove themselves from the auditorium. Shortly after the introduction the performance was in full volume. The opening song coming through loud and clear.

Unprepared

I had come to the performance not realizing this was a musical. I thought it was a play. Not three minutes into the performance I was overwhelmed. I was in the red zone. I was in tears. My ears were ringing, and I was putting all my energy into focusing on calming my self down and reducing my anxiety. After about five minutes the intensity of the sensory experience became a bit easier to manage.

At times my sensory loading would increase to a point that I thought it best to leave the auditorium. I was only three seats from the aisle so that was not to big a hurdle. Also, the people next to me would not have been surprised if I needed to exit given the type of audience in attendance.

Through a concerted effort during the whole 100 minutes (without intermission) of the performance I was able to take in the whole story.

Having a snack before the performance and again during the performance was helpful. I needed all the energy available to focus on avoiding sensory overload. It was physically a very taxing experience.

The sensory loading was coming from two aspects of the performance. The volume of the singing and musical accompaniment and the emotional impact of the story line. I hadn’t realized before coming that this was a musical. Live music continues to be one of my toughest sensory challenges.

The story had a strong emotional impact on me because it was based on the lives of real people. People having experienced loss. People having experienced separation from family during a series of stressful events, unable to reach them even by phone. People experienced hospitality with wide open arms from people with big hearts.

Through the whole performance I was struggling between the emotional sensory loading and the auditory sensory loading. It was an ongoing struggle with no let up. By the end of the performance I could not participate in the standing ovation.

I did not even try to get up till the auditorium was empty. I then got up and managed to slowly make my way to the lobby. I wended my way through the crowded lobby looking for a quiet place.

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Elgin Theatre art show – Signal Hill

I headed down the stairs to the art display . No one else was there. Time to look at the paintings of Newfoundland. After about twenty minutes I was ready to walk back to the train station. The longer I walked the better my momentum became.

By the time I boarded to commuter train I was dealing with a low grade headache. The other symptoms from attending the performance had mostly cleared up. By late evening my headache had cleared.

Next morning I was stiff. Every muscle in my body felt like it had gone through an intensive workout. Chest muscles, arms, legs, fingers, back. The challenge of dealing with sensory loading for the 100 minutes was like an intensive physical work out.

In conclusion

Attending what was billed as a performance for people with sensory challenges was helpful in some ways while at the same time adding to my challenges.

Seeing the challenges others have with their sensory and related issues contributed significantly to the emotional sensory loading. However, attending a musical and dealing with an emotional story line, I would have had similar sensory challenges at a regular performance.

What I appreciated most about attending the performance is that it put me at ease about my own sensory loading. I felt I was in a socially safe environment. That reduced my level of stress helping to reduce some of my sensory loading. Not feeling at risk of embarrassing myself was a value added feature.

A day after the performance I was wondering why I didn’t make use of one of the accommodations that Elgin Theatre staff had made. I had been so focused on making it through the performance that I didn’t even entertain the ‘problem solving’ of considering the benefits of walking out. Had I walked out I would have been able to see the performance on the lounge screen. Next time I might walk out and try the lounge with the TV screen. However, I didn’t come to watch the performance on a digital screen so that wasn’t my ‘go to’ solution. However, listening to the digital version of the music would have significantly reduced my sensory loading.

Listening to the story line was a vicarious emotional experience. As such most of my emotional sensory loading cleared in an hour or two. That is in sharp contrast to recovering from personal emotionally challenging situations in which it often takes me several days to have the sensory loading clear enough to taking on my daily tasks.

Preparations to consider

The event caught me off guard on some elements. Though I was prepared for others due to previous experiences. That made me consider what I could have done to further help mitigate the negative effects on me.

My preparedness kit now contains the following items.

  • Snacks: to help maintain my level of energy
  • Headphones: to mitigate the effects of unexpected noisy environments
  • Note pad: to communicate when my sensory loading makes talking difficult or impossible.
  • Travel Pillow: assist with immediate short term recovery

Over time I will likely add additional items to my kit.

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Neurodiversity in the Classroom

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Arboretum – Collingwood, Ontario

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.

Domino Effect

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Mystery part

Domino Effect.

A break in routine should not be a big deal. Little did I expect the domino effect it would create. Given the strenuous nature of the activity I should have had some inkling.

I was the last of 85 cyclists to leave camp that morning. In hindsight I should have left later. Being the last rider did not concern me as we were scheduled to meet at the 120 km point in the century ride for a photo op. The midpoint was a milestone, an occasion not to be overlooked. It had been 3490 km since we had dipped our tires in the Pacific Ocean, with 3490 km to go before we would dip our tires in the Atlantic Ocean.

I arrived at the midpoint with a little over an hour to spare. I was a great opportunity to take in a nap… well, more to the point, a nap just happens when I relax after being very active for a few hours.

Failed recovery

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Steam whistle

After the photo op I completed the last 40 km of the century ride for the day. With the long break in the early afternoon and the heat I arrived in camp knowing that my recovery protocol was essential. I couldn’t afford any short cuts or missed steps today.

This is where a seemingly very good day began to unravel. I didn’t have sufficient time for the full recovery protocol. I had set up my tent and prepared my recovery liquids as expected.

About forty minutes into my recovery time, supper time was announced. I had relaxed a bit, but had not had the benefit of a nap (a key element for brain recovery). The nap at the midpoint was to blame. I decided to get up and head over to the pavilion some 200 meter away. Missing supper was not a good option.

My walking was very slow and difficult, not a good sign. As I approached the pavilion with almost a hundred people engaged in animated discussions I looked for an empty spot near the edgge. No luck. I knew I couldn’t take the level of noise in the middle of the pavilion.

I chose a picnic table about 30 feet from the pavilion. By this time, the effort of walking, the unsuccessful attempt to find seating, added to my sensory overload, further reducing my functioning to the bare essentials. I sat down at the picnic table in tears.

The other term that is used instead of sensory overload is the term flooding.

Shortly one of the support drivers came over, having decided something was amiss. She asked me what was wrong. As I was unable to say anything coherent, she followed up with insisting that I tell her what was going on with me. Good intentions but the last thing I needed was to be flooded with questions. My brain was too fatigued. I didn’t need help. I just needed a quiet place with no questions adding to the flooding.

A second person came over out of a sense of caring. He asked me a few questions further adding to my flooding. Again, I was not able to give a coherent response. He suggested I move over to the group not wanting me to feel isolated. He insisted I was among friends and didn’t need to shrink away from them.

Had I decided I felt too vulnerable in my condition I would have foregone supper and remained inside the safety in my tent. I had chosen to join the group because I trusted this group of people based on the generous support I had experienced earlier in the tour.

I managed to convey that I simply needed a quiet place. In response the fellow decided he would join me for supper and just wouldn’t talk so I would have the quiet space I needed. An interesting choice for which I had no objection.

While I was eating my supper a kitchen staff member came over to me and simply put her arm around me. No questions. No need to know what was happening with me. Without adding to my flooding, I could simply convey my appreciation by putting my arm around her. No need for words, yet an unambiguous sharing of support and appreciation.

After thoughts

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Flywheel

I have meanwhile arranged for an advocate to step in should I have another situation of sensory overload or flooding. I would simply refer the well meaning help to my advocate so that attempts to help me doesn’t add to my flooding.

Once again, I have stumbled across a situation that is hard to plan for. I did not have my regular support people near by. It’s just not possible to plan for all eventualities. Can’t be done. How does one plan for the unexpected?

For most people it’s hard to understand how to deal with someone who is neurologically atypical. Their experience with neuro-atypcial people might be rare or non-existent. Trying to help becomes counter productive. Without some careful reflection, the situation can continue into a downward spiral when the necessary answers or responses aren’t forthcoming.

In thinking aloud, I do wonder whose needs are being met with the questions that were put to me. What information was essential to my well-being at that moment?

Suggested guidelines

When someone is experiencing ‘sensory overload’, or ‘flooding’ or severe neuro fatigue, it is most helpful to keep things simple. My suggestion is to focus on whether the person is in a crisis that would require emergency action. The two most helpful questions would be:

1. Are you in pain?

2. Do you need help?

Both of these questions can be simply and clearly answered with a nod or shake of the head.

Some helpful questions could be:

1. Would you like me to keep you company?

2. Are you fine where you are now?

These questions while being less intrusive can be just as effective in assessing what help is needed with neurologically typical people as well.

Comedy

One way to determine the difference between a person who is upset or distraught as opposed to experiencing sensory overload or flooding is to use humour. It might seem strange to use humour when a person is in tears. A person who is experiencing sensory overload or flooding is not able to respond to humour. Since the key purpose of the intervention is to determine whether additional help is needed, using humour would not be considered inconsiderate or out of place.

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Reynold – Corlis steam engine

Finding a Gentler Way

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In the shade of a fieldstone wall

Conversing with a half dozen people is more wearing

Than biking 20 km in traffic

Participating in a worship service is more demanding

Than biking 30 km dodging rain showers

Walking into a store for a quick errand can be more frustrating

Than biking 40 km into a head wind

Listening to live music for half an hour requires more recuperation

Than biking 50 km through hilly country side

Driving for 4 hours will affect my balance more

Than biking for 60 km on a chilly day

 

Some activities have a way of causing neuro fatigue

While cycling rejuvenates the whole person

 

The physical exertion

The rhythmic movement

The outdoor ambience

Nature’s symphony;

The wind in the trees,

The call of the cardinal

The chirping of crickets

 

Sounds that respond to each other

Sounds that sidle up to you

Sounds that heal,

Sounds that sooth the senses

Sounds that lift one’s spirits

Being neurologically atypical, things don’t add up in a way that makes sense to others. While I am able to do certain activities with ease and experience satisfaction, there are plenty of activities that leave me challenged.

 

Schools: Risky Place for Neuro-atypical Child

kinder-patterns-001Social vulnerability

Prior to my ABI, I could deal with adults who engaged in a wide range of socially unacceptable behaviours. With my career it came with the territory. I would ignore or excuse the negative behaviour and focus on the message the person was trying to share and decipher what response they were looking for.

Living with ABI does not allow me to tolerate much in the way of socially unacceptable behaviour. I’m living too close to my limits. Being neurologically-atypical, my brain very easily goes into a downward spiral due to the neural fatigue triggered by the social indiscretions. I experience additional neural fatigue in trying to make sense of the situation. My body shuts down and makes me unable to function properly for a day or more. Now, for the sake of my own well being I need to keep my distance from people who create these situations.

School yard bullying

I am shocked by the schoolyard bullying statistics for children with disabilities. Students with disabilities experience bullying at 3 to 5 times the rate of neural typical children. (*In one study  63% of children with autism experience bullying compared with 12% for their typically developing siblings.) While I’m still shocked by the apparent lack of empathy exhibited by their peers, my ABI experiences has given me some new insights.

Against the background of my ABI experiences I can understand why  for example, students on the autism spectrum are at very high risk of being bullied. It is partially due to the invisibility of their disability. Since their disability is not visible, their atypical behaviour is viewed as abnormal making their peers feel that they are the target of the behaviour.

Neurologically atypical risk

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Primary classroom

Any child who is neurally atypical is at greater risk of being bullied. This refers to many children who are neurally atypical but have not necessarily been diagnosed. These children often lack the skills to respond in a ‘socially acceptable’ manner. Invariably they are viewed by their peers as ‘odd’. Often they are viewed by other adults as ‘difficult’.

It’s not hard to imagine how social situations with even borderline neurally atypical children can spiral out of control over time making the child a target for bullying.

When I encounter an adult who lacks some significant social awareness I will experience neural fatigue which can induce other physiological challenges. After a few encounters with such people I am inclined to keep my distance in the future. Contrast this with a neurally atypical child who has little control over their environment when they are in a structured setting such as a school.

If I didn’t have the choice of exiting at will from an unpleasant environment I would see a sharp decline in my quality of life. Unlike a student, I don’t need to ‘argue my case’ to remove myself  from an unpleasant or ‘harmful’ situation. Often I’m not able to explain myself when I’m  dealing with an adult who is socially insensitive. It isn’t till a day or two later, that I’m able to provide an analysis of what contributed to my neural fatigue.

Lacking self autonomy

While I’m at liberty to remove myself from a ‘harmful’ situation, whether with a lame excuse or simply walk out, how does a child in a school setting remove him/herself?  There are rules. Rules have consequences. For a child to walk out of the classroom because something changed in their environment resulting sensory overload, or neural fatigue, things can get complicated quickly. If the teacher wants an explanation from the child in many cases the child will be unable. The child might even be in tears because of the overload or fatigue.

After several repeats of this type of behaviour one of two things happen. Either the child is at risk of being labelled a problem child or educational psychological testing is recommended. It is then hoped that the waiting list for testing isn’t 2 or 3 years.

Young children have a very keen sense when they are not being understood or being affirmed, whether by their peers or the adults in their life. When you add lack of understanding or empathy to a child who already has challenges dealing with their physical environment we have a recipe for disaster.

Empathetic adults are essential

It takes an understanding adult to see past each situation to determine which behaviours are a result of the child being neuro-atypical. Add to that the behaviours that arise from the child not receiving empathy due to being repeatedly misunderstood.

It is critical that adults work from a default stance of “the child is not able,” rather than “the child is uncooperative.” The difference in stance might seem subtle but is easily detected by the child and the child will decide whether the adult is empathetic and can be trusted.

How to provide a safe ‘escape’ for neurally atypical children is something that each adult needs to take seriously. It begins by being aware of what situations become triggers for the neurally atypical student. The triggers  will be unique to each student so there is no generic list to work from.

Action research tool

Any adult who works with a ‘problem’ child needs to take the time and engage in what is referred to as “Action Research.” When a parent, a daycare worker, or a teacher, takes the time to observe and take notes the effect can be profound. Combining empathy with knowledge will do much to avoid frustration for the adult and disappointment for the child. The notes will often uncover patterns or provide nuances that identifies the subtle factors which are at risk of becoming behaviour ‘triggers’. The beauty of the method is that it is responsive, flexible and produces helpful information in a relatively short time.

* Michelle Diament, March 26, 2012 www.disabilityscoop.com