Dyspraxic Fun House

I couldn't get to sleep last night so I was thinking about a way to get non-dyspraxics to understand how frustrating ordinary things can be. My brilliant idea was to create a special fun house (like they have at fairs and carnivals). Here are my ideas:

1. The walls would move randomly leading to people careening from side to side and walking into walls
2. There would be lots of optical illusions so visitors would trip and walk into door frames because they wouldn't see that the floor was rising to meet them. 
3. A bunch of corridors would look exactly alike and have random doors leading to other identical corridors so they wouldn't know if they'd been that way before and which way to turn to get out.
4. There would be a place where walking would require great balance (tightrope or moving floor maybe) and would lead to falling over. 
5. To get through one section, they'd have to wear stiff puffy gloves and pick up a single sheet of paper (without crumpling it or the paper under it) and pick up a dime while someone watched them. 
6. They'd have to draw a map of the fun house (still with gloves on) and write descriptions legibly. 
7. Crazy glasses that warp reality would be worn while they catch balls moving at high speed toward their faces. 
8. Still with the crazy glasses on, they would have to judge distance and volume.
9. Clocks would be everywhere and move slowly so they would think that they'd been there 5 minutes when it was really 3 hours. 

That's what I came up with at 2am. Any suggestions to make it even better?

Guides

The world can be frightening for a person with dyspraxia. It is common for dyspraxics to suffer from anxiety and panic attacks. For me, the world doesn't make sense because things change. I don't mean that things actually change but my perception of them does. I've mentioned before that on occasion I don't recognize places that I've seen before which seems to be a spatial problem. Then add in the short term memory problems, an impaired ability to plan actions and failures in the past and you have a recipe for anxiety. There are times when I just can't figure out what I should do next or what steps to take and am paralyzed by indecision.

I've realized that I use guides to help me with these problems. These are people in my life who understand how difficult some things are for me. As a child, there are many guides to teach children how to behave in the world. Parents are usually the first guides and they teach children how to react to new situations by taking the lead and being an example. A child begins to learn and attain confidence in their environment. Once school begins, teachers are the main guides. For me, this was the time when things started to be more difficult. I was one of many children under their care and "immature". I had difficulties with a number of teachers even after I was identified as having coordination problems. There was an expectation that I would catch up to my peers and if I didn't, it was because I didn't try hard enough. Peers become the most important guides later and children are not always kind to those who are different.

I've realized that as an adult, I've had a number of guides. These are people who know that I don't want to go first into a strange place. They give me directions that most people would find excessive. If I ask where a bathroom is in a restaurant, these people know better than to just point. They tell me what I will pass on the way there and if there is anything that could throw me off. They even tell me how to get back. If I have to go into a new situation alone, they give me tips about processes and how things work. My friends and family help me in uncomfortable social situations by spending time talking to me and giving me a run-down on the other people present.

My wife, Pamela is my most frequent guide now. She always goes first into the unknown unless I am more familiar with an environment then she is. She is our public face in a sense. Naturally friendly and chatty, she is comfortable with strangers. She has an excellent memory for faces and can remind me of who people are. When we are driving (her driving since I don't) and I have the sudden panic of not knowing where I am, she will tell me. Pamela is kind of a scary guide though, she jumps into the unknown with little fear and I am stuck following (with enough fear for both of us and a few other people). If rules don't make sense to her, she circumvents them (apparently, when they say no returns at a store, they don't always mean it). Since we are such opposites in some ways, I have the opportunity to use my strengths. If a situation requires dealing with authority figures, following rules and instructions, negotiation or dealing with difficult people, I lead. I do have strengths and the best guides recognize those strengths and step back when I am the best person to handle things.

I didn't ask any of these people to help me and they don't know how dyspraxia interferes with my abilities in certain areas (or even that I have dyspraxia in some cases).  I'm not dependent on my guides however and without them I would still manage to navigate the world. With their presence and help, the world is much less difficult, stressful and anxiety provoking. These are people who accept me the way that I am and understand that I need help sometimes. I'm very lucky.

Awkward

I have always envied my brothers and mother for their abilities with other people. My mum was very popular and loved by everyone in the family. In my head I call my oldest brother Richard "Mr. Personality" because he comes across as very friendly and open to other people. My other older brother Sean seems to be liked by everyone and they seem drawn to him. People want my brothers to like them. When we go to extended-family gatherings, Sean is immediately inundated with children. They want to climb him and play with him and be near him. Our cousins and Aunts and Uncles all like him quite a lot too. The kids are not as interested in Richard but everyone else like talking to him. He draws people into his circle. Enter me. I am shy and have difficulty when there are a lot of people. My family loves me of course and I love them but I often feel anxious, awkward and uncomfortable when I have to be in a big group with them.

Socializing in general makes me uncomfortable. I have to tell myself what to say and how to behave. Interacting with people socially doesn't come naturally or easily to me. The problem is that I care a lot about how I come off and about whether people like me or not. I berate myself for making mistakes even if nobody else noticed. I blurt things out. I forget what someone just said to me. For years, I've called my cousin's wife by his ex-girlfriends name (I think I have it straight now). I once mistook my own nephew for my cousin's son and asked my aunt how old he was now. I think that I must come across as kind of strange. Likely people don't notice much odd about me. I am just Leslie to them and they probably don't judge me the way I judge myself. They may sense my uneasiness and discomfort and they may misread it as my not wanting to talk to them.

My brother once said to his wife that when I was young, I was socially immature. He said it kindly and it is the truth. It seems to me that immaturity should resolve itself in time. At 44, I'm still waiting to grow out of my social immaturity.

Another Definition

I found another description of dyspraxia that I rather like. It includes a couple of things that the list that I previously included didn't. I've only included the sections that caught my attention so feel free to go and look at the whole thing.
It is from http://www.autism-help.org/comorbid-dyspraxia-autism.htm. I should mention that it is common for people on the autistic spectrum to also have dyspraxia.

Dyspraxics (along with people who have similar conditions on the Autism spectrum) may have difficulty sleeping since there is an inability to force the brain to stop thinking and “shut down”. A dyspraxic is nearly always thinking about several unrelated things at once, (the inverse is also possible, with only one dominant thought occupying the dyspraxic’s entire attention span at any given time) so this may cause easy distractability and daydreaming. It is quite easy for someone with dyspraxia to concentrate entirely on a particular thought instead of on the situation at hand

.
I like this description because it explains something that I knew about myself but didn't quite understand. I have a lot of trouble sleeping. My mind races gleefully through ideas, stories and memories. I used to do a lot of stress thinking at night and thought that once I got those demons under control that I would sleep easily. It didn't work, I just have a very busy brain. I have had trouble sleeping my entire life and have tried the whole gamut of insomnia behavioral modification tricks. They didn't work. Now I sleep peacefully within 30-90 minutes of going to bed with pharmaceutical intervention.

This busyness of my mind isn't just at night, I am always thinking about something and am often distracted by my own thoughts. My brother recently did a funny impression of me as a child daydreaming. I never thought that it was that obvious - although I did get caught doing it quite a lot. In his impression, I had a far away look in my eyes, with relaxed facial muscles and an overall peacefulness in my demeanor. I knew that it was dead on as soon as I saw the expression.

People with dyspraxia can have generally poor social skills due to emotional problems and/or a limited ability to ‘read’ situations and people’s body language. They may have a literal use of language and so find it hard to understand phrases, idioms and/or sarcastic conversation. People with dyspraxia are not purely autistic in the sense that they normally desire to interact with others but merely lack the ability to do so to some extent. Due to this inability to understand other people, most dyspraxics find themselves alone because it may be more comfortable for them. This inability to be around and relate to other people may cause severe frustration in a dyspraxic that may manifest as unusual emotional immaturity in childhood.

There it is in a nutshell, a problem that I have struggled with throughout my life I have great discomfort dealing with groups of people, especially in a party environment or other social setting. I do well with one or two people but get me in a group and I am overwhelmed. I am described as shy - which is accurate. Missing from the shy explanation though is the terror that I will say or do something wrong. I will be misunderstood or misunderstand someone else or thought of as an idiot or... - in short, go down in the fiery flames of embarrassment. Add in my excellent memory for verbal information and I get to relive the embarrassing situations over and over again. I've lived long enough now that I can say to myself "no big deal, nobody else cared/noticed" but I still remember how I felt then.

Strangely though, put me in a work situation and I do all right. I am comfortable with giving presentations and speaking in meetings. I once gave a talk in the middle of a crammed university centre about life as a lesbian on campus. I didn't freak out or feel uncomfortable doing it. I think that I do better because in non-social settings because there are rules. I speak, other people listen and then they ask questions or make comments which I do or do not respond to - simple, clear and easy. Social situations are like a free-for-all, there are no clear rules to guide you through them.

Christmas and coordination

I have always loved beautifully wrapped Christmas presents. Shiny foil paper with ribbons and bows are my favourite. It's not about receiving the beautiful presents but about creating them. Every year, I have a clear vision in my mind of what I want the presents to look like. I pull out the wrapping, bows, tape, ribbon and scissors with great hope and trepidation. Then harsh reality sets in. I have to cut the paper in a straight-ish line and without the jagged mini-cuts that I normally do. I have to judge how much wrapping paper I need for a particular present. If I succeed in the first two steps, I have to crease and fold the paper and while holding that in place I have to rip off an appropriate sized piece of tape and place it on the paper so it actually holds things together.

Things really fall apart at this stage. I usually end of with too much paper in the wrong spots so it bulges and many pieces of tape holding together the spots that I missed with the first piece of tape. Somehow, and I've never quite figured out how, the paper rips and I don't notice until I've done all of the other steps. There is no way that I am going to start again! I grab the ribbon and try to cut the right length. I've tried wrapping the ribbon around the present and then cutting the right length but holding the cut end down and rolling the whole bunch of ribbon around the present and then holding the place to cut leads to chaos. I then have to tie or tape the ends of the ribbon so it stays on the presents. I use scissors to get the ribbon to curl the right way (you're probably rightfully shuddering at the thought of me pulling the ribbon across the scissor blade and not cutting the ribbon or myself in the process).

Finally, I get to the relatively easy part of putting self sticking bows on the present. I say relatively because I usually miss the place where the ribbons comes together on the first try. You can't pull the bow up without ripping the wrapping paper under it (trust me, I've tried many many many times). Then I add some extra bows to cover the bulges and rips. Next, I look at the final result -yikes, not quite what I hoped the end product to look like.

My very clever wife has purchased many gift bags over the years and has shown me how to make the tissue poke out of the top of the bag in a decorative and enticing way. Then she pretends that it looks decorative and enticing when it ends up as a crunched up ball sticking out of the bag. Bags just don't feel the same as a pretty present to me though, they don't draw the eye and excite the same way. They just sit awkwardly under the tree as a glaring reminder that I couldn't do what I wanted.

On another note, having the right spouse makes a world of difference to my uncoordinated life. She never mocks my presents and always appreciates the effort that I put into it. Two months ago, I knocked my second favourite coffee mug over and smashed it to pieces. One of my first presents this year was a new coffee mug (it has already edged out my former favourite mug to become most favoured). There were no warnings not to smash this one too or condemnation about my frequent breakages. All she said was, I thought that you needed a new second favourite mug - I ordered it right after you broke the other one. Then she took it for me and put it somewhere safe while I opened the rest of the presents so that there would be no Christmas tragedies. It is so nice to be understood.

Not all bad

I don't want to give the impression that I am wallowing in self pity or blaming everything that is difficult in my life on dyspraxia. There are some perks too.

My long term memory is excellent. I can remember things from childhood that others can't. I remember books that my mother read to me and stories that she told about our family.

I have good verbal skills. I remember conversations that I've had with people. I stopped taking notes in university because of the difficulty I had with writing and paying attention at the same time. I simply sat in class and listened. I still (14 yrs later) remember certain lectures and seminar topics. I've come to realize that I'm actually kind of smart.

I don't have a lot of trouble with gross motor skills. I've always been able to run and jump and do many other activities. I loved gym class unlike most dyspraxics who will tell you that it was their personal hell in school. I play soccer on a 35+ women's team and while I'm not a superstar, I still enjoy the physical movement and the team environment.

I'm compassionate and understand difficulties that other people have.

I've developed my own ways of getting around dyspraxia. I have a sense of humour about my difficulties (most of the time). I mostly realize that the little things aren't that important (like eating neatly).

I can type.

I can develop complicated databases and learn quickly how to use new programs.

I can absorb new ideas and concepts easily.

There are probably more things that I'm good at but the point is that realizing that you have a learning disability doesn't mean that everything in your life is bad. There are things that are harder for you than they are for other people but you probably got some gifts back in return. Celebrate the positives as well when you recognize the negatives.

Spatial Sense

Most people take their spatial sense for granted. In fact I would guess that most people don't even think about it at all. I think about it a lot. When I put a glass on a table and miss by a foot (thus sending glass and liquid flying to the floor) or when I walk into a wall instead of through the doorway or when I can't find my way home or when I try and do anything artistic, I think about it.

It seems to me that I just don't see things the way other people do. Most of my friends would recognize a house that they pass every day. I have moments when I have no idea where I am. I don't recognize the landmarks near me. I can be standing at a intersection that I frequently go through and not know which way to go.

If I took you to the middle of the woods in the dark where all the trees are the same and left you there. You would probably not be able to find your way out. With no sun, no compass and no moss that you can see growing on whatever side of the tree moss grows on, you would have none of the usual navigation tools that you rely on to get you out. You would probably panic - with anxiety, fear and confusion clawing at you. You may be the sort who would stay right where you were until someone came for you or you might intrepidly strike out to find your way. This is what the world often looks like to me. Every place can be a strange place and I am challenged to find my way out. Sometimes I freeze hoping that someone will come along and tell me which way to go and sometimes I intrepidly strike out hoping that I will get where I am going.

In the world of dyspraxia, I am very fortunate. I know my left from my right. I can read maps. Many can't and I can't imagine how they manage. So next time you are traveling through familiar territory, give thanks to your spatial sense for making it all possible.

Understanding my own quirks

You may wonder why I care whether I have dyspraxia or not - after all, I'm long past going to school and I can find ways around the things that are difficult for me. The fateful day that I looked up developmental coordination disorder and then found dyspraxia was the day that my perspective on my whole life changed. We have scripts in our life that we carry with us from our past. Mine sounded something like "I'm clumsy", "I'm stupid", "I have no artistic talent", "I'm lazy", "I'm careless", "I sound like an idiot when I try to socialize with people" and on and on and on. Knowing that my coordination issues were not left behind in childhood and that dyspraxia encompass more than just hand issues means that certain problems that I've had are not my fault.

I drop and break things because of dyspraxia. I'm not stupid, I just think differently from most people. I don't recognize landmarks and get lost because of dyspraxia. I don't drive because of dyspraxia. None of this means that I will give up on trying difficult things. Certain things are difficult for me. Most people have difficulties with some things in their lives. Knowing about dyspraxia means that I can drop, break, trip, walk into people and things, get lost, temporarily forget random words or skills, be awkward socially and all my other quirks and know that it isn't my fault. There is a lot of power in being able to let the self-blame go.

What is dyspraxia?

What is dyspraxia, you may ask. The best source that I've found for information about dyspraxia is from the UK Dyspraxia Foundation at http://www.dyspraxiafoundation.org.uk/index.php

If you are an adult with dyspraxia there is an excellent source of support at http://www.dyspraxicadults.org.uk/

I have shamelessly copied from their site for the following list of adult symptoms (see http://www.dyspraxiafoundation.org.uk/services/ad_symptoms.php). Please note that nobody has all of these difficulties.

Symptoms

People who have dyspraxia often find the routine tasks of daily life such as driving, household chores, cooking and grooming difficult. They can also find coping at work is hard. People with dyspraxia usually have a combination of problems, including:

Gross motor co-ordination skills (large movements):

• Poor balance. Difficulty in riding a bicycle, going up and down hills
• Poor posture and fatigue. Difficulty in standing for a long time as a result of weak muscle tone. Floppy, unstable round the joints. Some people with dyspraxia may have flat feet
• Poor integration of the two sides of the body. Difficulty with some sports involving jumping and cycling
• Poor hand-eye co-ordination. Difficulty with team sports especially those which involve catching a ball and batting. Difficulties with driving a car
• Lack of rhythm when dancing, doing aerobics
• Clumsy gait and movement. Difficulty changing direction, stopping and starting actions
• Exaggerated 'accessory movements' such as flapping arms when running
• Tendency to fall, trip, bump into things and people

Fine motor co-ordination skills (small movements):

• Lack of manual dexterity. Poor at two-handed tasks, causing problems with using cutlery, cleaning, cooking, ironing, craft work, playing musical instruments
• Poor manipulative skills. Difficulty with typing, handwriting and drawing. May have a poor pen grip, press too hard when writing and have difficulty when writing along a line
• Inadequate grasp. Difficulty using tools and domestic implements, locks and keys
• Difficulty with dressing and grooming activities, such as putting on makeup, shaving, doing hair, fastening clothes and tying shoelaces

Poorly established hand dominance:

• May use either hand for different tasks at different times

Speech and language:

• May talk continuously and repeat themselves. Some people with dyspraxia have difficulty with organising the content and sequence of their language
• May have unclear speech and be unable to pronounce some words
• Speech may have uncontrolled pitch, volume and rate

Eye movements:

• Tracking. Difficulty in following a moving object smoothly with eyes without moving head excessively. Tendency to lose the place while reading
• Poor relocating. Cannot look quickly and effectively from one object to another (for example, looking from a TV to a magazine)

Perception (interpretation of the different senses):

• Poor visual perception
• Over-sensitive to light
• Difficulty in distinguishing sounds from background noise. Tendency to be over-sensitive to noise
• Over- or under-sensitive to touch. Can result in dislike of being touched and/or aversion to over-loose or tight clothing - tactile defensiveness
• Over- or under-sensitive to smell and taste, temperature and pain
• Lack of awareness of body position in space and spatial relationships. Can result in bumping into and tripping over things and people, dropping and spilling things
• Little sense of time, speed, distance or weight. Leading to difficulties driving, cooking
• Inadequate sense of direction. Difficulty distinguishing right from left means map reading skills are poor

Learning, thought and memory:

• Difficulty in planning and organising thought
• Poor memory, especially short-term memory. May forget and lose things
• Unfocused and erratic. Can be messy and cluttered
• Poor sequencing causes problems with maths, reading and spelling and writing reports at work
• Accuracy problems. Difficulty with copying sounds, writing, movements, proofreading
• Difficulty in following instructions, especially more than one at a time
• Difficulty with concentration. May be easily distracted
• May do only one thing at a time properly, though may try to do many things at once
• Slow to finish a task. May daydream and wander about aimlessly

Emotion and behaviour:

• Difficulty in listening to people, especially in large groups. Can be tactless, interrupt frequently. Problems with team work
• Difficulty in picking up non-verbal signals or in judging tone or pitch of voice in themselves and or others. Tendency to take things literally. May listen but not understand
• Slow to adapt to new or unpredictable situations. Sometimes avoids them altogether
• Impulsive. Tendency to be easily frustrated, wanting immediate gratification
• Tendency to be erratic and have 'good and bad days'
• Tendency to opt out of things that are too difficult

Emotions as a result of difficulties experienced:

• Tend to get stressed, depressed and anxious easily
• May have difficulty sleeping
• Prone to low self-esteem, emotional outbursts, phobias, fears, obsessions, compulsions and addictive behaviour

Many of these characteristics are not unique to people with dyspraxia and not even the most severe case will have all the above characteristics. But adults with dyspraxia will tend to have more than their fair share of co-ordination and perceptual difficulties.

Dys(sed)

When I was a child, I had a lot of trouble doing up buttons, snaps and shoelaces. I couldn't colour within the lines and forget cutting with scissors. Writing was onerous (to say the least). When I was in second grade (7yrs old), I began to receive support in school from an occupational therapist. I've been told that this is like a miracle since it was 1972 and even today people have trouble getting help. I was told that my small muscles were underdeveloped. The focus of the OT sessions was on developing and strengthening those muscles. I improved an after 2 or 3 years, I didn't receive support any more but my teachers had been educated about my difficulties and on the most part were very supportive. My other difficulties such as my spatial sense were ignored entirely - I got lost easily and often couldn't remember where my classroom was if I started out from a different direction than usual. I loved running and jumping but I randomly tripped on nothing or careened into stationary objects. I had a lot of trouble learning my left and right (more than most kids). I had anxiety problems. I was socially immature and had difficulties with other children. By 9 I had friends, but my relationships weren't really that good for me.

Fast forward to the middle of sixth grade (11 yrs old) when my family moved from British Columbia to Ontario. I've seen the transfer papers and they don't mention anything about my previous difficulties. They did mention my high reading levels and verbal skills so expectations were high. I struggled with many subjects and received my very first "she does not live up to her potential" on a report card. My anxiety became a bigger problem (I missed a lot of school because I felt sick to my stomach and didn't want to vomit at school - in retrospect, this was clearly an anxiety issue). I was still immature and awkward socially which was very painful.  At 14, I started suffering from depression.

Fast forward to university before the personal-computer age (1985). Until the final draft, all the work of an essay was handwritten. Handwriting hurt my hand and unless I wrote slowly and carefully, I couldn't read my draft. When I typed the final copy, I made spelling mistakes regularly and there was no spell check to call my attention to it. I also made mistakes because of the messy handwritten drafts. I was trying very hard to be like everyone else and failing miserably. My depression and anxiety became huge problems. After four years of failures and frustration, I dropped out of school having only passed enough credits to be half way through a four year degree.

Fast forward to the affordable PC age. Two years later, after a lot of reflection and spending time in the workforce, I returned to school. I also was able to get a PC. I attended school at 60% a normal workload to help manage my depression and anxiety. I took control of many aspects of my life (living conditions, job etc.). My grades in school went from mostly C, D, F to As and Bs. For the first time since I was 11, I believed that I might be smart. I finished my undergraduate degree and went to grad school where I did very well. In a poor economy, it took me a while to find the perfect job but eventually I did (or very close to perfect anyway).

Until recently I thought that I had a childhood difficulty with coordinating my small muscles. I've come to realize over the last few years that my difficulties didn't go away. I have difficulties and not just in coordination. I have trouble planning my work day. I break and drop things - a lot. I can get lost almost anywhere. I have continued to suffer from depression and anxiety and many of my old problems. I began to realize that I have a problem in certain areas. I did some research (I love you internet) and ran across two terms Developmental Coordination Disorder (DCD) and Dyspraxia (used interchangeablly sometimes although DCD is diagnosed in North America and dyspraxia almost everywhere else). Suddenly, my life made sense. I can see dyspraxia/DCD in the pattern of my life. I prefer the term dyspraxia because it seems to encompass more of my difficulties.

I'm starting this blog to think and talk about dysprxia and hopefully to learn more about myself.