Embracing Nature’s Soundscapes

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Peter’s Woods near Centreton, Ontario

Time and again I’m struck by the overlap between autism as it manifests itself and ABI (acquired brain injury). Often I can relate to the coping mechanisms that autistic people choose in order to get through the day or deal with a particular environment. One of the coping activities I read about recently is the choice to go non-verbal.

When I am in a social setting I might be verbally engaged for ten or fifteen minutes. When things get too busy, when the conversation wanders and requires more effort on my part I will experience a level of neural fatigue. At that point I will often choose to go non-verbal. I am still engaged with the conversation, but I will begin to conserve my energy and respond by nodding or raising an eyebrow or some other non-verbal cues. Should my neural fatigue increase I will look for an inconspicuous way to exit from the space.

Social interaction requires varying degrees of cognitive functioning. Over time the cognitive demands will create a level of neural fatigue that I need to address. The sooner I acknowledge the neural fatigue and address it the shorter my recovery time will be.

Recovery spaces

When I’m in a social environment and have reached my limit I need a space that will help me recover. Napping is usually the least helpful option, though spending time in a quiet room is sometimes the best that’s available.

Indoor sounds tend to have an echo or reverberation. The reverberation that most people don’t seem to notice, makes it hard for my brain to relax. Attempts to block out sounds and impressions puts additional demands on my brain.

When I’m outdoors there are so many sounds at a variety of decibel levels. However, it isn’t the decibel level that stands out, but rather the way different sounds flow together. Sounds are somewhat muted in their own ways.

Being outdoors in itself isn’t enough. It’s most beneficial to be away from intrusive mechanical sounds. Mechanical sounds such as commuter traffic, heavy truck, gas powered lawnmowers are jarring. The noise level varies greatly and can be unpredictable and startling.

Being outdoors in a natural environment is the most helpful for recovery. The natural sounds tend to be more mellow than mechanical sounds. However, the call of a crow or a blue jay can be quite raucous. While a heavy truck might create a jarring sound, a screeching brake or an engine backfiring, a crow or a blue jay might initially be raucous, but the follow up sounds as they begin to fade have a predictable pattern.

Sounds in a natual setting can better be compared to a symphony. The sounds have a gentleness to them, they have sense of belonging in that space. It’s the gentleness and predictablity of the sound that allows my brain to relax, to recover from some of the fatigue.

Sounds in nature are somewhat predictable. Each habitat, made up of a certain mix of wildlife, has its own symphony of sounds. The sounds have their own cadence as the sounds modulate, changing in intensity or volume. At the same time the sounds are not repetitive. That also contributes to a more restful state.

Natural sounds for Neurotypical people

A study was done some time ago to measure the benefits of walking to reduce stress. One group was assigned to walk for 20 minutes a day along city streets. The second group was assigned to walk for 20 minutes in a park or nature preserve. The study concluded that walking in a park or nature preserve had a much greater impact on lowering the level of stress than walking along a city street.

Sometimes I find that my ABI sensitivities can be used like a ‘canary in a coalmine’. I develop habits or find environments that are critical to my quality of life and my ability to recover more quickly. What is critical for me to function better, often are the same habits or environments that are helpful in improving other people’s quality of life.

 

 

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Maybe it’s Better if I’m the Boss

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Encouraging progress – with a little  help from my friends

I had two friends come over recently to help me assemble a project. It was a job I could not do alone. It was a job that was easier and therefore safer to do with three people.

I wasn’t sure how doing this job with three of us would go. I know that working alone is cognitively less demanding and therefore helps minimize neural fatigue.

The last time I had done a project with two other people neural fatigue had totally exhausted me after about two and a half hours. That was including the coffee break.

Necessity made me move ahead and invite two friends over. From a cost benefit stance I was okay with needing time to recover from the work party. They didn’t arrive very early so I had time to have everything prepared. I had set out the necessary tools. I had also thought through the process so I was clear that with the three of us the job would be very manageable. There were several things I had overlooked, but that is no surprise.

Looking back

When the job was done, we stopped for lunch. One friend commented that he was surprised how well I was doing. In truth I was pleasantly surprised as well. We had been working for three hours without a break. Even when I sat down to relax the neural fatigue did not catch up to me. A second pleasant surprise.

So, what made the difference? I have some thoughts on the matter. I should because that’s one of the goals of working with an OT (Occupational Therapist). She is training me to be my own ‘detective’ in figuring out what factors work for me and what factors push me to my limit.

There is one key difference between my experience helping my friend at the outdoor education centre and this recent experience. Helping at the centre meant I had to get myself up to speed on the nature and scope of the job when I arrived on the site. This recent job was my project. I had gradually developed an overview of how I would use my volunteer help. I had several days to get the whole process figured out and was ready for it. My brain was on track and barring any unexpected changes, my lack of mental flexibility was a non-factor.

The Day After

The next day I went to check that the walls were level and squared up with each other. To my dismay the front wall was about an inch over from the back wall. Eventually I managed to get the wall moved after dealing with the steel pins that ran through the bottom plate and into the concrete. Two hours of problem solving left me totally exhausted. Enough for one day.

The next day I realized that even though the bottoms of the walls were squared up with each other I could not assume that the top of the walls were squared up. When I check I was out more than I want to admit. Some more problem solving. The challenge was to figure out why the tops of the walls didn’t line up. After about two hours of attempting different things I succeeded in getting everything squared, and level. Once again I was totally exhausted. Two days in a row of reaching my limit. I did not want to experience that for a third day.

Assembling the walls and making sure a measurements are accurate takes some attentiveness. Though not as cognitively demanding as problem solving how to get things squared and level.  I was reminded to be prepared for dealing with certain parts of a project to be neurologically fatiguing.

The challenge is to minimize the need to correct errors. While that is the ideal, the reality is usually different. With some of the deficiencies that come with ABI errors are very likely to happen.

Despite some push back on my  part I have been convinced to request the help of a rehab assistant to help me develop strategies and organization skills to reduce errors and other disruptions while working through more complex projects.

Being the boss is helpful for some aspects of a project, but it does bring it’s own challenges.

The Paradox of Being Alone

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Wilderness cabin

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.

Planning Ahead

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.

Presenting

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.

Summary

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.

Common Sense doesn’t always make sense

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A Toy Box in the Making

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.

Pre-ABI

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.

Other’s experiences

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.

Helping others

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.

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.

 

The Joy of being Dead Tired

20170503_170822The joy of being dead tired is somewhat akin to the blessing of experiencing pain. (Chronic pain is a much different matter.) Pain is a gauge that the activity one is doing is harming you. Pain is the gauge to alert you that you need to stop to prevent further injury.

Being dead tired is a clear signal that you need to stop what you are doing. Part of being dead tired is realizing you have just put your body through a strenuous activity and have prevailed.

Inducing Physical Fatigue

I decided against attending the Good Friday service since the numerous songs would rather quickly contribute to my neural fatigue. The down side of that is having to make an early exit from the service. This always brings with it a measure of disappointment as it once again highlights one of my ABI limitations.

My alternative was to go for a leisurely bike ride. By leisurely I am referring to my pace, not the distance. I chose a route with quite a varied terrain. The route involved some hills that required me to use my lowest gear (A 15% climb in places). The reward being some great down hill stretches in which I exceeded 60 km/hr (40 mph). Though going down hill at that speed does make me a bit nervous about the risk of a spill, road rash and other possible injuries.

As the two hour mark approached I had covered over 35 km, I was longing to get home and be done. At the same time, despite my physical fatigue I was feeling great. I was still able to push on without experiencing much discomfort. The best part about physical fatigue is that it comes with a wonderful reward – a blissful night of sleep.

Reducing Neurological Fatigue

In contrast to physical fatigue, experiencing neurological fatigue is difficult. Neurological fatigue interferes with sleep. Neurological fatigue leaves me feeling at loose ends, no motivation to do anything, unable to focus and therefore often at a loss as to how to address it. I have gradually figured out that doing something physical that is repetitive and not too demanding physically and cognitively very low key is the best option.

Recently when I was experiencing neurological fatigue, I was looking for a way to help alleviate it. I was away from home, so cycling wasn’t an option. Walking was somewhat helpful but I lacked the motivation to keep going. (With cycling, it’s the bike that keeps me going, whether it’s a slower or faster pace depends partly on the terrain.) I found a quiet place to relax, read a bit and did some writing. For two days I experienced no relief. Being in an unfamiliar place interfered with recovery.

It wasn’t till the day after I got home that I began to experience recovery. I had enough initiative to do some cycling. I headed out beginning with a very relaxed pace. As I ‘listened’ to my body I was gradually feeling the neural fatigue diminish. Gradually my pace increased. The quietness of a well tuned bike (a quiet bike is a happy bike) allowed me to take in the natural sounds around me. The sounds of birds, the wind in the trees, the chatter of squirrels, the occasional bark of a dog are all soothing sounds, sounds that seem to belong. The sounds serve as an introduction to what I can expect to see as I cycle along.

After cycling an hour or two I get home feeling physically fatigued. With the neural fatigue being noticeably diminished I soon find myself napping. The bliss of a good nap, the feeling of waking up relaxed and refreshed has no equal.

The Search for Healing Sleep

Most of my life I have been blessed with the ability to be able to lay down for a nap when I needed it, even when we had a house full of young children. With ABI it’s the neural fatigue that causes serious disruption to my sleep pattern, both night sleep or a mid day nap. Neural fatigue interferes with enabling one’s brain to slow down; unable to put active functions like problem solving, creative thoughts on hold.

Bringing one’s body back into balance makes physical fatigue a real blessing. Each time I experience success with physical fatigue, the activity that bring on physical fatigue becomes a motivation for countering the next episode of neural fatigue.

Being able to trade neural fatigue for physical fatigue is a much desired conversion experience.

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