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