Pushing forward

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Recently I committed to addressing a group of educators. As I mentioned in a previous post, I was torn between turning it down and going ahead with it. On the one hand going ahead with it made me vulnerable to the possibility of failure. On the other hand I felt compelled to advocate for atypical students and the challenges they face in a neuro-typical classroom.

Compelled to move ahead

I chose to share some of my observations of students I had taught during my 25 years as a classroom teacher. I recognized students over the years for whom I had made accommodations due to the way they presented themselves. While I recognized  some of their behaviours as their attempt to cope, I had no idea to what extent their behaviours masked or gave indications of their struggles.

In my learning to live with ABI (acquired brain injury) and therefore experiencing life as a neurologically atypical person, it has prompted me to think back on some of the undiagnosed, neurologically atypical students in my past.

Tempted to back out

At the risk of failure, I was reluctant to move ahead with sharing my observations. First of all, an hour and a half presentation was beyond my limits to remain cognitively engaged.

I had questions about my ability:

  • what if I experience sensory overload?
  • what if the delivery is incoherent?
  • how well will I be able to follow my notes?

I had other reservations related to the limitations that I experience with ABI. I’m often searching for the right noun, while verbs don’t elude me. I easily lose my train of thought. Stray thoughts send me out on tangents not directly related to the topic.

Planning, planning and some more planning

In working with my OT (occupational therapist) I was reminded to structure the presentation to match my limitations. In addition to that it was important to have a plan B. What if I couldn’t finish the presentation? Design the presentation in a way to minimize my own sensory loading.

I failed to minimize my sensory loading in part by not limiting the size of the group. But the larger group might have doubled my resolve and increased my focus.

The most important part of the planning was to partner with a co-presenter. By brainstorming, identifying the key points, recognizing what information and experiences were relevant, and settling on a comfortable structure and flow, hopefully the central theme would come through clearly. And most importantly, that attendees would benefit.

Heartening response

The next day an educator stopped by to see me. She told me that attending my workshop is what got her through the two day convention. Having shared my limitations as part of my presentation gave her the emotional space to give herself permission to acknowledge her limitations. That allowed her to modify her participation and choice of activities without being apologetic about focusing on her own needs.

In closing

I was reminded last summer that as a leader, when you share your own limitations or vulnerabilities, you give others permission to begin to push their own mask aside.

For me, the desire to advocate for struggling students made me push my own misgivings aside and focus on a need in others. That convinced me to push ahead. By acknowledging my limitations I maintain my integrity as an educator, yet connect with others on a personal level.

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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.

IKEA and ABI: a Confusing Combo

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IKEA cupboard with bookshelf

My recent experience made me realize I have not bought anything at IKEA since the pre-ABI era. In the past I was able to assemble an IKEA purchase in record time. Not only could I assemble the computer desk or end table or cupboard quickly, I also didn’t have any pieces left over.

My recent IKEA purchase left me wondering whether from now on I should avoid that store.

I won’t bore you with the details but I ended up assembling every page of the instructions twice. No matter how carefully I would line up the parts with the IKEA hieroglyphics booklet I would somehow get it wrong.

A few years back the instructions included the step of gluing all parts that are held together by dowels. While it makes the furniture more durable, I now know why they no longer include that step.

After I assembled each section, I would take a break before going on to the next step. After getting back at it I would eventually line up the right pieces and the necessary hardware only to find out that the part I had completed was put together wrong.

I would back up one step, hoping the glue would let go, reassemble that part and move on to the next step. I didn’t think it was possible, but sadly putting things together backwards and reassembling happened all the way through the process.

I did manage to put the doors and handles on the right way the first time. That’s because it would take a total idiot to install them wrong. There is no upside or downside to confuse.

Once I was done assembling the cupboard with the upper bookshelf I had more than a few pieces left over. I puzzled over the left overs for awhile. After studying the hieroglyphic booklet I recognized several parts from assembling the cupboard.

I worked my way through the hieroglyphics booklet and emerged with a fully intact second cupboard. Sadly I once again ended up reassembling each section twice before I had it right.

Sleuthing expedition

I stopped in at IKEA to find out I had completely mixed up my purchase. I prefer to blame the IKEA showroom for the mix up.

The showroom had the cupboard displayed as a single purchase with a price tag of $129. Nearby was the same cupboard with the bookshelf attached. The price tag of $149 was attached to the bookshelf part of the display.

Since I wanted the book shelf and the cupboard I made note of the order number for each. I went down to the self-serve area and confidently loaded up the boxes.

You’ve probably figured out my oversight. I couldn’t see how there could be only a $20 difference between the cupboard by itself and the cupboard with a bookshelf as a complete unit.

Notes to my ABI self

  • Do not shop alone at IKEA.
    • Reminds me of the paint store that wouldn’t tint paint for a husband unless his wife was along or he had a note from his wife approving of the colour.
  • Ask the cashier what I am actually purchasing.
    • That’s assuming the cashier actually knows what’s in the plain beige coloured boxes.
  • Price in the cost of hiring a furniture assembler.
    • That’s assuming someone else understand the booklet written in hieroglyphics better than me.
  • Return the extra furniture and tell them I changed my mind once I saw it assembled.
    • I was told they would be friendlier with me if I had the receipt but even with it assembled they would take it back.
  • It’s not worth driving an hour to return the extra cupboard.
    • Find a local person looking for a bargain
  • Don’t shop at IKEA on the weekend.
    • Unless you want to be one of the customers lined up 15 deep in each of the 20 checkout lines.

Anyone looking for an IKEA cupboard pre-assembled and ready to be enjoyed? Just think. You won’t have to waste time in the checkout line. You won’t have to waste time driving into the big city. You won’t have to waste time assembling the dresser. That makes it worth double or triple the purchase price.

What I ended up with.