Micah Marnoch. You took your time, challenging the doctors and midwives, till you were good and ready to make your grand entrance into your waiting family. And a grand entrance it was, rocketing your way, letting no one slow you down, not looking any worse for wear as you began to take in this whole new world, mom, dad, grand….
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
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.
The hidden nature of my disability was brought into amusing focus. Walking along the beach on day, while on a recent holiday, I overheard two people talking. The comment that caught my attention was, “Oh there’s the man with the broken finger.” Later in the day, someone who I had met a few times was concerned when he saw my hand. Was I okay? How did it happen? Do you need a hand? (No pun intended.)
The irony is that the attention this nuisance injury got was wildly disproportionate to the attention my ABI had gotten considering it’s ongoing affects on me.
The response I got to my injured finger reaffirmed in me that at heart most people are considerate. Even what looks like a minor injury is given the benefit of the doubt and people take the time to ensure that all is well and things are on the mend.
As I deal with my ABI some people are in tune with when I’m struggling due to a set back. Others are totally oblivious or choose to ignore the times I struggle. Either they don’t notice or they notice but are uncomfortable and don’t know how to deal with it.
At times I have been dealt harshly by people who took offense to my actions or responses rather than having my actions understood in relation to my ABI. In comparison, if my leg was in a cast no one would take offense if I fail to run along with them when invited. For people who don’t understand ABI I can’t expect them to give me the benefit of the doubt each time.
Most of the time I am not dealing with an exacerbation of symptoms. On the good days I simply need to be mindful of my limitations and avoid activities that create stress or sensory loading.
As much as I try to avoid situations that become cognitively too demanding, resulting in neurological fatigue, there are times that it does happen. The longer the stressful situation persists the worse the after effects are, requiring longer recovery time.
The symptoms are multi-faceted. At times the symptoms begin to manifest themselves subtly while I’m in a ‘stressful’ situation, other times my whole body begins to shut down noticeably while I’m clearly beyond my limitations.
Let me describe what happens if I’m in a protracted discussion in which I need to resolve a conflict. Fortunately this is a rare occurrence.
A difficult discussion requires several skills that for me are seriously compromised. Problem solving has gone out of the window. I can’t think on my feet. Initially I can engage in the discussion, respond to questions, or explain myself.
If I’m being mindful I will notice that I gradually shift from being actively engaged to moving into a listening mode. My verbal responses will become more intermittent and brief in nature. Gradually I will not be able formulate a coherent response. I will find it increasingly more difficult to process what I’m hearing, evaluate the import of the comments and decide what requires a response. At this point the mental process of remembering the salient points, and formulating a response becomes laboured. As neural fatigue becomes more pronounced I become unable to respond to even straight forward information of fact. My memory starts to fails me and leaves me unable to correct errors of fact.
Once I can no longer comprehend basic questions I know my body begins to physically shut down. The neural fatigue affects my muscle coordination and my emotional vulnerability. At that point I know I need to remove myself from the situation. Hopefully the opportunity avails itself sooner rather than later.
When I am experiencing neural fatigue I notice that it most directly affects the part of my brain that controls several important functions; sleep patterns, emotions, body functions like hunger, temperature response, memory and a natural defense response to my environment.
In the following three to five days that it generally takes to recover a number of things happen. The first day or so I will have a headache at least part of the day. (At this point in my recovery headaches have thankfully become uncommon.) Walking will be more difficult due to a loss of muscle coordination. If I approach the top of a stairway, I need to pause before I take the first step down. I need to make sure that my brain has adjusted to the change. To miscalculate the first step would put me a risk of falling down the flight of stairs.
After sitting for longer than 15 minutes standing up and walking becomes a difficult transition. The lack of muscle coordination makes getting up awkward. Often I’ll need to support myself and focus on my balance while attempting my first few steps. It’s like my brain is waiting for a cheer leader to get me moving.
The neural fatigue, even though it slows down my brain functioning, doesn’t let me simply nod off when I want to sleep. The neural fatigue directly interferes with my ability to sleep. It is common to have a couple nights with only 3 or 4 hours of sleep. I try to augment my sleep by napping during the day but rarely manage more than a half hour to 45 minutes. The neural fatigue results in my brain not being able to prioritize functions. I’m not able to filter input and as a result I’m not able to put aside ideas or impressions that keep me awake.
Listening to a radio program or reading is one way to redirect my attention so that I can fall asleep. However, my sleep is easily interrupted and leaves me feeling tired on waking. I know I’m making progress once I’m able to nap for an hour and a half or longer. (Any nap over 30 minutes is not really a nap because it’s long enough to put ones body through a complete sleep cycle.)
During the first couple of recovery days, answering a phone call, or meeting a visitor at the door is disorienting. Initially my response is quiet and my tone is guarded. The response to a call or a visitor puts too much demand on my mental resources; who is calling, what do they want, what is expected of me. Taking in all that information while at the same time formulating a greeting is taxing and happens with awkward pauses. It’s not the split second reflex that I could handle pre-ABI. As a result my tone of voice will not sound very welcoming. My slower response leaves a second indicator that could be interpreted as annoyance at being bothered.
In the first couple of days I am emotionally vulnerable. Any additional stress such as hearing bad news on the radio will stop me in my tracks. Any bad news about family or friends will affect me in an exaggerated way. During this time I avoid documentaries, videos or books that deal with topics of loss or pain.
Least intrusive is experiencing double vision during the first day or so. When it first happened I didn’t notice it. One day it dawned on me that I was seeing signage with a shadow effect. I couldn’t recall which store signs actually had that effect. I knew for sure I was dealing with double vision when road signage had the shadow effect.
My short term memory is compromised during those first few days. I will find myself forgetting simple things. Remembering a second errand will have disappears while walking across the house. That in itself reminds me to slow things down for a few days.
When I’m going through a 3 to 5 day recovery time most people are not aware that I’m struggling. Those who know me do notice and give me space and time.
Visible or Invisible
The visible reminders that come with open wound injuries has the benefit of being understood and people giving due consideration. While that might seem helpful, it also comes with a continuing reminder that you are dealing with an injury. Sometimes I don’t want to get a reminder.
When dealing with ABI there are no obvious visible clues to remind others when I am experiencing a difficult phase in my recovery. At the same time, I wouldn’t want my struggle to be openly obvious to each passing stranger. There is comfort in having a certain amount of anonymity.
I’m encouraged when I’m dealing with someone and they comment, “Doesn’t look like you’re having a good day.” I very much appreciate it when in response they make some accommodations or ask how they can be of help. I don’t mind when people want to clarify their observation. It’s helpful for both of us. It definitely helps avoid the hurt or insult that happens when someone is oblivious to my condition.
Part of good social etiquette is tuning in the the person you are talking to. We might not tune in when we are in a hurry or we have something urgent on our mind, but it helps us communicate more effectively when we are mindful of our default position.
(I didn’t think it was appropriate to post a picture of my ‘talking finger’ extended in a cast. Just saying.)
I recently had my first experience in a ‘third world’ country. While having traveled in more than a dozen countries, this recent visit stood in sharp contrast. Prior to leaving home we had been coached as to what goods and resources would be helpful to bring for the local people.
We had arranged accommodations at an all inclusive resort. We noticed that the people in the nearest village did benefit from the ‘gifts’ that people had given them during their holiday at the resort. So we decided to visit a distant village to share the goods we had taken along.
Cabby for Hire
We hired a cabby for two and a half hours at the cost of the Canadian equivalent of $40 to take us to a distant village, about an hour away. The first thing that struck me was the cab which was older than me. Imagine riding in a car from the early 1950’s still considered reliable enough transportation. What made the durability of the cab even more amazing was the condition of the roads. We spent a third of the time driving on the left side of the road to avoid pot holes and washouts. We spent another third of the time driving on the shoulder where it was smoother than the road. The hour’s drive got us about 40 km (25 miles) from the resort.
When we arrived at the village we were well received despite arriving without advance notice. The subsistence lifestyle meant there were plenty of people out and about in the village. Once the local people realized we had t-shirts, baseballs, caps and shoes to give away word spread very quickly. They were eager to receive gifts from us and responded with deep appreciation. It was interesting to see some of the young people coaching others, making sure they thanked us in English.
One woman who walked up to me did not reach out her hand when I offered a t-shirt. I wasn’t sure what to do till her neighbour signaled to me that she was blind. It didn’t take long before we ran out of gifts. I had a twelve year old lad who asked if I had a t-shirt in my knapsack for him. I told him I had run out. The look of disappointment was clearly evident. Still very polite. The only thing I had left was a can of pop. Not what I had in mind. At best a minor consolation. I’ll have to look him up next year.
As we drove away from the village that look of disappointment stayed with me. We had come too far for me to retrieve something from my room. I was in tears the first ten minutes as we headed back. Even now as I write this I am in tears.
On the way back the cabby asked us if we would like to stop for a coffee. We welcomed the offer even though we hadn’t seen a restaurant or coffee shop on the way down. About twenty minutes into our return trip the cabby pulled over at a farmstead. On the way out he had stopped briefly and called out in Spanish. I guess that was our drive-by coffee order.
We were welcomed into the sparsely furnish concrete house and given a chair in the living room. The living room had a colourful porcelain tile floor. While we waited I was pleased to see that they had some basic appliances. The house had a fridge, a tv and a radio. On the wall hung a framed medical diploma of an older son who did not live there. The kitchen was in a separate shelter to keep the wood heat used for cooking out of the house. They made sure no goats or chickens wandered into the house while we visited.
The grandmother served the coffee to the four of us in identical navy blue miniature cups. I thought it was excellent coffee – and that from a non-coffee drinker. When we were ready to leave I wanted to leave her a small tip. She absolutely refused it. When I offered her a Canadian flag pin, she felt honoured to receive a gift.
Before leaving I took a picture of the family, grandmother, mother, father and daughter. The grandfather had decided to not hang around while we were there.
Visiting a third world country is so different from reading about it. The resource- fulness of the people is amazing. They improvise, they manage without, they do double duty with what resources are available. Everywhere we looked there were goats or chickens. There were no lawnmowers in sight. Between the free ranging goats and chickens and the tethered cows and horses and the penned up pigs, the job got done. No annoying lawnmower motors, not even at the resort. Fences were made of barbed wire and reinforced with a hedge of cacti that were regularly trimmed, probably so they would spread and keep the goats in. Even so, goats would be grazing along every road we traveled, often scurrying to get out of the way of the occasional car or truck that drove by.
The ‘gifts’ that I gave away came completely from my own dresser of plenty. Having collected t-shirts which are liberally handed out at special events, Race Against Drugs, Anti-Bullying, Sea to Sea, SumoBot etc, end up lying unused because the event is over. Had I simply donated them to a local charity I would never have realized how appreciative over 2 dozen people could be with one person’s surplus clothing.
This experience has increased my commitment to raise funds for the Sea to Sea cycling tour crossing Canada this summer. Sea to Sea is an agency that has set a goal of raising 5 million to fund projects in Canada and overseas to help end poverty, one person at a time.
The next time I hear someone around me say, “But I have nothing to wear,” I might be tempted to step up on a soapbox and shout out a rant.