Dyspraxia: The Struggle of An Adult with Dyspraxia

Post Addition: I want to clarify that I celebrate ANY difference including Dyspraxia. It does not make one flawed or wrong or less. However, there are some symptoms that create definite challenges in the current culture we live in especially...and daily life in general. I wanted to shed light on some of those issues to create understanding...NOT to get sympathy nor to disabuse those who have Dyspraxia (including myself) but to provide a sense of community to those who may struggle within their beauty. *This is mostly addressing Dyspraxia in an adult. I feel with my son that Dyspraxia in children can sometimes feel like a completely different issue. He has more communication difficulties and has to depend on adults to help him. While I do suffer from speech slurs, mixing up words and stumbling over my points, I CAN communicate my needs.Writing takes multiple drafts to catch all my mistakes but I DO end up getting my point across with people who understand which really helps being Dyspraxic in my case even if I am severe in many symptoms. I also am quite adapt at looking capable which confuses people. Also, I have updated (as of 2019) our journey on the bottom of this post.*

Many people and even professionals look at me like I am speaking a foreign language when I bring up "Dyspraxia." Dyspraxia is a disability that mainly affects motor skills but can also bring on a bunch of other difficulties. It can overlap with Executive Functioning issues, however many people can struggle with Executive Functioning yet not have Dyspraxia. For a full list of adult symptoms this is the best website: http://www.dyspraxiafoundation.org.uk/dyspraxia-adults/ 

Dyspraxia can often accompany Autism or Dyslexia but just like there are so many variations of different diagnosis, there are so many ways Dyspraxia can present. Many people who have Autism do NOT have Dyspraxia and many people who have Dyspraxia DO NOT have Autism. 

I can appreciate Autism and the beautiful ways it makes my brain work. I can look at Dyslexia and truly believe it helps me see the world in unique ways. I attribute my amazing capability to multitask in thought and deed plus a host of other great things to ADD and while each of these things (Autism, ADD, Dyspraxia) come with hardships, they each have Neurodiverse traits worth celebrating! (See Autism Labels on the side) Yet, I have not been able to find many positives to living with Dyspraxia besides having an understanding of others who struggle which I already had from my other differences. I do believe it DOES contribute to a differing perspective on life and I celebrate the Dyspraxic's unique wiring as well, but some of the symptoms can be challenging.

I recently checked out the Dyspraxia in Adults checklist to see if any of my symptoms have lessened. To my chagrin they have become worse. I can check off every point of the first 7 headings which is extremely depressing. I have a more severe case compared to the few I know who have Dyspraxia. Sometimes I wonder if it also can come hand in hand with Fibromyalgia? Regardless, both seem a tad extreme to have together.

When I was a child I was the last to be chosen for sports teams, gym class, recess, band class and even some artistic pursuits that required movement. I knew it was not because I was disliked but because I was horrid at any type of performance. Knowing did not take the sting out of best friends overlooking me because they wanted to be the best. I was an obstacle in their achievement and not a friend during competitive moments. As we grew, they picked me more out of friendship or maturity, but sometimes I wished I could opt out to save them the trouble. Teachers were harsh when they worked extra hard yet I showed no improvements. I was branded clumsy. I found it ironic that as a Christian Private School, competitive sports and music were the main values of students and teachers and that moral "fruits of the spirit" were judged according to outward acts and performance. Luckily, I was deemed intelligent in other educational spheres (I could write because that is how I had to adapt to communicate my thoughts) so I was not branded lazy, but they required more than they should have. Many times I would come home to crash on my bed, unable to move because my brain was completely unable to keep my body upright any longer.

I mistakenly thought that I would magically grow out of these issues. I had hoped that one day I would wake up as an adult and have that super power that most adults seemed to have: Capability. Instead of getting better, I became worse. When my kids were born I was expected to take care of more than myself. It's a wonder how I survived the early child rearing years not knowing any of the diagnostic criteria I know now. I was depressed. I never seemed to "get" the cooking and cleaning rules or movements. As time passed I found the judgment or "helpful hints" more and more frustrating. I had tried it all over and over. Practice, in my case, did not make perfect. In some circumstances, practice did help me to achieve minimal results, but it never made me exceptional nor consistent. Sometimes I could tie a shoe, other days I would kick my choice of footwear out of the way in extreme frustration and wear flip flops because ten minutes of attempts did not get me my usual results. Somehow, I made it through, and found the years after age six much easier...and homeschooling helped ease all the issues I would have had to deal with on a daily basis. My kids and I are way healthier in our home, doing what needs to be done, and not conforming to society's expectations. This came with a cost. A cost I would pay over again and do pay from time to time in other's opinions or society's expectations.

The toughest part for me was feeding myself. Most people are expected to make simple meals in adulthood. Even toast was (is) a problem for me and all the decisions that go into purchasing, choosing and prepping food was too much. Over the years I have suffered multiple burns, cuts, dangerous fires, accidentally caused food poisoning and contamination, have had laughable accidents, and broken many appliances, dishes and even have BENT (yes bent!) a knife. I can not understand pressure, too much or too little, and often I forgot to wear oven mitts even if they were plainly in sight. I grated my fingers many times. Not just grazed but took off chunks. One time a knife flopped out of my hands and just missed my kid. In the end, it was safer to stop attempting any sort of meal prep. As, I have mentioned in other posts, I was lucky enough that my husband finally (after years of struggle) took over all meals and grocery shopping. The kids and I eat Greek yugort and granola for breakfast every day to keep it manageable. With the help of our therapist, my husband's work schedule is different so that he could have an hour to cook lunch and be home early to cook supper. We are lucky enough to be in a position of work right now to do this but it came with it's own sacrifices and hard work (yet being perceived as lazy or not working hard.) He also helps a lot more than most fathers at home (plus home renos!) because all three of our children have special needs in differing areas - most unseen and not understood by our community- so thus we have had to learn how to live on a lesser wage because his time keeps myself, the kids and himself healthy and sane. We end up giving back more to society by seeming like we do less because we are healthy and whole.

 Luckily, my husband has ADD so he can sort of understand our brains because he is also Neurodiverse. He gets sensory overload because he has it minimally, so he can at least empathize more than most. He is creative and also thinks outside the box. He enjoys cooking on most days. He blasts his podcasts and gets creative. I felt guilty for a long time in regards to the cooking but since I do all the clean up after him, counsel our family, creatively think outside the box and organize the budget/ pay bills and many other difficult tasks that I can still somewhat manage- we have found our balance. It took a lot to get us to this point...especially in a conservative town that values traditional gender roles and the biblical version of the Proverbs 31 woman. To say we have run into sneers, jealousy, bitterness at our personal choices/ arrangement, and annoyance would be an understatement.

 It was embarrassing to go to the in laws for supper and not be able to offer meal prep help or even sometimes clean up. It had nothing to do with being unwilling to help out but everything to do with being unwilling to hurt myself, others or dishes. What do you do when people define help as purely physical? How do you contribute to a family function when there is that miscommunication? And what happens when you also suffer from social anxiety so thus do not even seem to contribute with wit or glamour? It's easy when I feel comfortable enough with dear friends or family or when I am in my own home where I know the pitfalls and can control my environment. My awkwardness and blunt mixed up phrases bring comfortable laughter or respectful camaraderie with those who truly love. In places where I was often misunderstood, I would typically find myself playing with the kids when they were under toddler age or conveniently caught up in a conversation when it came to help out physically to avoid mishaps. That fact shows how much I LOATHE physical performance because being Autistic, I do not love empty social chit chat either (I do LOVE deep philosophical conversations!) but I would take that over many physical activities.

I am thankful for those who tried to help. Unfortunately, the help never put me too far ahead and I think that fact bothered many. People like to see fruits of their labour when they offer help. The only part of the kitchen I can master, from time to time in my life, is baking. Baking seems different from cooking and if my husband or someone else is around to take the goods out of the oven, I do not need the use of knives.  I have broken two sets of beaters and both times it was loud and scary. Some years I do better at baking and some years I completely lose the skill only to regain it at a future date. I can't predict when I will succeed and when I will fail. To outsiders this is confusing and looks like I am making up excuses but the literature on Dyspraxia explains the fact that some days (even years) we can suddenly perform a skill for awhile until we can not. There are some skills that never will happen, even with practice (cooking and driving outside my limits are mine) and they vary from person to person. With Dyspraxia I have had to find unusual ways of doing normal tasks in order to be safe. 

We do not own any poisonous chemicals because of toxicity and health, but also because I easily mixed up unassociated bottles even while telling my brain what was needed. I have to go out of my way each day to make sure the stairs have nothing on them, that the rugs are completely secured, that my knives in the dishwasher are pointing down in the ONE container they are supposed to be in. Knives are NEVER thrown in the sink because it is a guarantee they will find my hand.

I can not clean up broken dishes. I have to call my husband or worse...my daughter. Because each time I do, I misjudge the pressure or distance of the object and slice open myself. Many people would think the daily habits I have to get through the day are due to OCD but they are just vigilant behaviours to keep me or those around me uninjured and alive.

There are moments I am occupied with something I love, like decorating, and am generally really good at, but if I have had an overwhelming day in any other regard (sleep depravity, social appointments, menstruation, being hungry ect.) suddenly my skills can seem obsolete. My husband heard me mumbling with frustration because I was decorating a mirror and the greenery I was putting around it fell down six times before I got it right. It would have taken him ONE try but typically, if it's something I enjoy, I prefer to work at it till I get it myself. It does bother me though that a simple task can be so frustrating and my body is uncooperative. Unfortunately, there are days where I reach my limit and give up completely. Sometimes giving up is the bravest decision and it takes strength to know our limits and listen to our body.

My son has Autism but he does not have Dyspraxia (he has other additional diagnosis.) He is capable of riding a bike or moving the dishes without breaking one. I look at his ten year old self or my daughter's eleven year old capabilities and sometimes I feel inferior in the physical realm. My youngest is Dyspraxic like me and I understand the frustration of working with someone who can not grasp simple tasks. Yet I know his frustration is double at himself more than anyone could feel towards him. It is continually frustrating to not be able to perform daily activities. Most Dyspraxic adults are highly individual. We like our independence. We crave being able to do what we want to do. It can be absolutely humiliating to ask for help day after day with tasks that can seem so simple. It's also annoying when people hear about our struggles and decide to stay away because they are afraid we will misuse their help.

We will mostly underutilize help because sometimes "help" makes our issues worse. We compromise certain movements or do them in unusual ways which sometimes can require privacy. Help means putting all these issues into the spotlight. My grandmother sometimes comes to randomly help me with my house. While I appreciate the gesture, this also requires ME to clean alongside her normally. In the end, I become more exhausted than doing it in my own unusual way. It also means the next day I will probably have more executive functioning fails than usual. I don't mind if she takes my keys while I am gone for the day and scrubs up my sink to her liking (if that makes her happy) but I do not want her to expect me to keep it up to that standard or for her to measure my cleanliness by my abilities.

This fact also plays into hygiene. Since I have been a teenager the Dentist always tell me that I am either over brushing or under brushing. They show me every time how to apply the right pressure, and I go home and have no idea if I am applying the needed movement for perfect teeth. Showering and shaving can be dangerous. I have a certain routine I must perform to keep injuries to a minimum and often I still end up with lots of cuts and bruises on my legs. I am always full of bruises from daily life.

Each time I go to physiotherapy, my therapist has to point her hands to the direction she wants me to go because it will take me too long to figure out right from left. She also has mentioned multiple times that I am TOO flexible and double jointed but one would never know because my muscles are so weak I can barely perform any actions. This double jointed flexibility causes me to over reach or underestimate a movement. I do not drive beyond my home streets unless it is an emergency and by the end of it I will be a nervous wreck from having to be hyper aware of all the movements that go into driving a car that other people simply go on autopilot for. I am constantly bumping into people, spilling things, and have never been able to ride a bike, throw a ball to someone accurately, or dance. I LOVE the concept of dancing. I used to long to be able to move like a dancer. I will dance in my living room but often it ends in tears from either bruises or awkwardness. The only time I can dance is when my husband takes me in his arms, allows me to step on his toes, and leads me around buffering me from any couch edges or inconvenient walls. Walls look so far away to me but yet are right there... I have walked into our walls many times.

I could give many more examples of daily living fails. If you want to understand someone with severe Dyspraxia, mindfully be aware of each task you do in your day and think of how it must feel to consistently mess it up or have to be aware EVERY day of possible injury. My eldest two children and my husband surpass me in most daily movement activities. They have to make up for my lack of balance, muscle control or ability. This fact can be a little devastating sometimes.

 I will try to achieve what I can. I contribute to the health of our family in many emotional and intellectual ways that it balances out but my ways are more unseen. It is sometimes a vulnerable position to be unseen yet be enough an of an anomaly to draw attention. In an achievement world, it is hard to not be able to show most achievements. In my world daily activities ARE achievements. I get giddy when I actually throw a ball into the net or when I suddenly am able to do a dance move. Those moments are very rare for me and when they happen I am delighted. I can not get disability even though I would not be able to work due to Dyspraxia (and other differences I have and anxieties) because it is not recognized as the extreme disability it can be.

Dyspraxia sometimes feels like the bane of my existence. About twice a year I break down over all of the fails and daily challenges. I sob and beg the powers that be to take Dyspraxia away from me. It seems dramatic but an unseen disability is just as traumatic as a seen one. Especially a disability that can take independence away or that has at least a few moments each day that are hard to cope with. I may have a list of "Cant's" but I also have a list of spiritual enlightenments and aha moments many people will not master in their lifetime. Each difference comes with some good and bad.

One positive fact of living with severe dyspraxia is not defining myself by achievements. Because if I did, that would mean on most days I am worthless. I do not believe I am worthless, however, I have had moments when my self esteem is incredibly low because my eleven year old knew what to do and how to perform a task better than I did. In the privacy of our home it can sting a little but out in public it looks neglectful. I have had to learn that it is ok to look like what I am not. I have had to believe confidently in my worth and my actions despite how I may come across. I have had to fight for myself, my moments and my safety.

My biggest fear, when the kids were little, was that someone would find out how hard life was for me and would deem me as an unfit parent. I never really talked about my struggles in these areas. Now that the kids are older and I have the power of my therapist, best friend, husband and small community I have built for myself, I know that my kids would not be taken away without a fight of support. I know people see I AM capable. In fact, often people see me as more capable than I actually feel I am. Because I am hyper vigilant they think I am the best babysitter safety wise (probably I am in some cases but it is EXHAUSTING) or a very put together person because of my confidence and ability to mask for short periods (or at least get through things with different strategies.) I do believe in myself strongly and my gifts but that does not negate the struggles.

This story is the one people misunderstand the most. It is the part of my life I am most wary about sharing. The only reason I am putting it out there is because it hurts. Some days it completely lays me bare with grief at some of my limits. (Honestly, if I was rich most of it wouldn't be a problem. I would come across awkward but I would have a personal driver and chef without worrying about burdening those I love.) I know that perhaps someone else will be hurting too...and maybe they can find this post and know they are not alone. I don't have answers for living with Dyspraxia but I do know that it is important to leave the tasks that can not be done to others, and find alternative ways of doing things that work the best for you personally. It's important to find a way to live outside the box of society yet still contribute in some way! Most of all, I hope that anyone who suffers from severe disability can look at themselves, despite the suffering and see worth. Even if it is not severe Dyspraxia or disability your struggle is STILL legitimate. In anything, there are good days and bad days. Celebrate the good, get through the bad any way you possibly can and give yourself grace. It's easy to feel alone in these invisible struggles (thus my song choice), but you are not alone. I need to remind myself of that fact often, and perhaps this can also be a reminder to you.

*2019 UPDATE: I have learned a lot more hacks since writing this post. A few years of Physiotherapy has especially aided my abilities along with going on the treadmill every day and lifting three pound weights (any larger and I hurt myself without a personal trainer but I am slowly hoping to increase.) I am more co ordinated than I used to be due to this dedication. However, my biggest areas of struggle are still driving and cooking. The other struggles vary from year to year and often coincide with my physical health which I am pretty stringent about. I am constantly on new food for health phases, vitamin regimes and movement.

My children are older too now and can help in the areas that I am still not the best at...so the issues seem way less. I feel more capable even though I still have many of the same struggles, but I have found more work arounds! I know I am valuable, give much to the world around me, and am especially gifted in certain areas. If you are struggling with this I strongly urge you to consider Physiotherapy as it was a game changer for me...and it was free here in Canada.

My son is also finding more abilities as he ages, although it still takes him a few hours to accomplish what should take twenty minutes (example would be cleaning or dishes or chores.) Both of us still try to do tasks we struggle at accomplishing...unless they are severe danger areas like driving and cooking. We both still break dishes occasionally, have multiple injuries and find ourselves in messes often, but it's easier now. Actor Daniel Radcliff has Dyspraxia. He has spoken up about it before. You can actually see the evidence when he dances with Hermione in Harry Potter...he dances like my son and I:) I also think Cory Monteith’s character Finn from Glee could be an undiagnosed Dyspraxic. He had an awkward way of moving and it took him a lot to learn dances. Yet, he was endearing, talented at the drums ect... There are many ways we can still live a beautiful life.

https://www.pinterest.com/KAlluraMarie/

Post Edit 2:) A friend sent me this post on Dyspraxia and I thought it was beautiful too:
http://thinkoutsideofthecardboardbox.blogspot.co.uk/2015/02/the-emotional-side-to-dyspraxiadyslexia.html?m=1