So what is the question, well here it is......
Thursday, February 26, 2015
So what is the question, well here it is......
Posted by Philip CalledtoQuestion at 9:32:00 PM
Tuesday, February 17, 2015
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 frivolous social chit chat either but I would take that over many physical activities.
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...including breathing and walking...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 is DEVASTATING.
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 "Can'ts" 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 gut wrenching grief at some of my limits. 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.
I would also recommend my 'Quotes I Believe In' board to inspire you on your life path OR if you are an INFJ/INFP that board also has some encouraging pins:)
Posted by Philip CalledtoQuestion at 8:44:00 PM
Saturday, February 14, 2015
Happy Valentines Day to you all.
There are no valentines day cards that say it better than the Lord of the Rings.
Posted by Philip CalledtoQuestion at 8:30:00 AM