Sensory Overload on Holidays like Thanksgiving/ Christmas/ Easter.

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Grandpa and I in the Autumn

Holidays and Sensory Overload:
This post was for the Sensory Link up. Canada was going into Thanksgiving weekend and this had me reflecting on holidays which are a particular minefield of social and sensory issues. Our family is mostly introverted. My husband is social but he needs a lot of down time. He works hard at home and at work, thus he values his rare chill time with us. We all are sensitive and also hate travel. We don't like to stay in environments we don't know well or that have sensory overloading factors. If the house has a smell, is set up differently, is unclean or involves pets or certain colours, we can be set into a tailspin. My husband has this sensory disposition in a couple factors but the kids and I have them in all senses. Some people view this as picky or snobbish. It's not.

We are aware of how we come across yet we can not help what triggers our brains into panic or wary regard. Most people are unaware of the sensory information during a typical day. These people would smell the stench of a skunk or notice if a dog was aggressively licking them, but would probably not notice the normal daily sensory information at stronger levels.

A sensory person may pick up on the way the dog stinks like wet poop which may trigger a vomit reaction or that the pup's tongue feels rough and sticky or the intrusive infringement on personal space. Perhaps if it's not animals that put the sensory person on high alert, it could be the way the fluorescent lights cause dizziness or potential migraines.

How do those with sensory overload do it? Why do we expect people who are different to behave in the same way as the rest of culture when the brain is set up so much differently? The same places in the brain that cause minor discomfort in a normal person can cause actual pain in someone who is sensitive and wired differently.

Food Intolerances that Affect Holidays:
Diet restrictions, food intolerance, severe allergies and dislikes all add to the holiday conundrum. Often people think of dislike as a preference but a dislike is not being intentionally difficult when it comes to food. Most people have at least one food that repulses so much it induces gagging or vomit. For a sensitive olfactory system, textures and tastes can do this on a constant basis.

Because in childhood we are chastised or forced to eat things that repulse us, most sensitive people have eating disorders or feel ashamed around food. Surprisingly we also have astounding self control so most of the time we don't vomit but it takes a lot not to gag. We were taught by default that food is for other people. We had to please others with our reactions and our tastes. We were not allowed to have strict preferences. Most of us do not have many good memories when it comes to mealtimes. Luckily, this was recognized for my children in recent years and they enjoy their food even though their diet would be considered strict by most. See THIS- CLICK- post.

It is so refreshing to have meals that sit well in the gut, taste and feel good to consume. There are only a few people in our lives who will understand or tolerate the long list of stuff we will not touch. It's easier to decline an invite then come across as high maintenance. We love to cook our own food because we know how it's done, is clean, is allergen free and is made up of textures and tastes we enjoy. To get around this with family sometimes we suggest a meal if they really want us to show up. Potlucks are the worst because of all the unknown factors. As a family we loathe the traditional Christmas/ Thanksgiving meals. Of course due to tradition family doesn't want to change the menu and that is understandable. It should also be understandable that we don't want to spend our holiday dreading the food and feeling sick later.

A traditional Canadian meal at Thanksgiving, Christmas and Easter often involves turkey or brazed chicken, mashed potatoes, corn, salad, buns and high sugar juice. Dessert is usually full of pecans, white sugar, nuts or some form of pie. Unfortunately, none of my immediate family can have bread, stuffing or pie due to Celiac and gluten intolerance. We love mashed potatoes but always pay for consuming them so we try not to eat them much either. Turkey and corn make us very sick. Broccoli causes a full attack in myself. Stuffing and pie involve sugar and gluten and processed ingredients. Salads often have nuts (allergy) or unknown dressings or ingredients. I am allergic to cucumbers and dislike many types of texture. My kids are very sensitive to textures too. In previous years we would join a meal, eat a little bit and feel unsatisfied and sick later. Often we would come home with huge headaches (all of us, including my husband) and diarrhoea. Not an ideal end to a holiday. Yet, family still expected it despite giving explanations. We used to bring our own food to varied events but gradually felt uncomfortable with that for big meals. We don’t want lingering resentment or judgment if everyone has to change their dinner plans for us. For small meals we don’t mind bringing a casserole we can eat as we have gotten quite adapt at that, but it feels exclusive and awkward if we are eating an entirely different meal at large functions with some who may not understand. If it was a meal we could entirely dictate and not prepare that would be awesome sometimes, but who really wants to do that? We prefer to eat at home and if we really want to spend time with someone we will have them over for dinner at our home or coffee/tea or show up after the eating is finished for tea/coffee. 

Odours that Affect Holidays:
Odour and smell memory have been researched and the brain's connection to this sensory factor is the strongest one, even for normally wired people. Smell can induce PTSD or warm childhood memories. Odour can cause severe aversion or chemical attraction. For those whose brains process sensory information at a stronger level this is one of the toughest sensory factors. For instance, the smell of my own laundry drives me crazy on a daily basis. I have switched detergents, bounces, changed my routine to wash more, and even bought new machines at one point. Nothing has alleviated the smell. Every day I get whiffs on our clothes of old water or mouldy stench. I had my friends smell our clothes to see if we were also consistently offending others. They sniffed and sniffed and finally announced that they could smell a light dirty water smell under the bounce but that they really had to take notice. They actually wondered if my water is softer or the pipes are carrying something. Regardless, I can't handle it. There have been many times I have pulled a shirt out of the laundry just to throw it back in with frustration. I have been hugging my kids when the overwhelming stench causes me to ask them to change. Many nights I ask my husband to take his PJ shirt off because I can't cuddle up if he is wearing it. Luckily this comes with other perks:)

 I got rid of all of our towels, bought new ones, and STILL it smells like stale armpits when I used my towels to dry off after a shower. It is such a relief to go to my mother's and smell the light scent of chlorine or cleanliness. This is just my own laundry in my own house. It affects me every day. Depending on the level it can induce crankiness and sometimes even depression. Can you imagine having to deal with someone's foreign scent and whatever issues their laundry, cleaning products, hygiene products, pets, and cooking odours their house contains?

I tried to cover this up with candles and perfumes but I can't find one that doesn't give me a headache, make me want to puke, or is simply not in my taste range. It is so rare for me to find a scent I love that when I DO smell something good I hound the area until I find out what it is. I have asked people what shampoo they are wearing or scent. Unfortunately, most of the time whatever I ended up purchasing wasn't the product I was smelling. The flip side of this is a good scent. Many scents are too strong but every once in awhile I will smell a memory or feel a moment of complete satisfaction induced by smell. I love my mom's laundry and my grandmother's cooking aromas. I love the way my husband's skin smells like sunshine. I love how my children often smell like flowers or how my cousin's perfume adds to her chemical balance to create a lovely waft of springtime. Unfortunately, her scent does not have the same affect on my chemical balance...I tried. Sometimes, I walk into a house and feel immediately at peace due to their aromas, but I try to recreate it at home and it does not work.

Smell and taste are the two areas I am rarely satisfied. They are also the two areas that can make me sick enough to feel the need to escape. It's like getting the flu and feeling the panic just before throwing up. I know my children have it in these areas and that that other highly sensitive people feel this in their own special ways. Often we don't have the words at the time to express what we are feeling. Most children can not explain that a smell is causing a meltdown. Nor will they understand that unless an adult picks up on it and explains it. In therapy I have realized many of my childhood illnesses and meltdowns were due to these sort of triggers.

Social Sensory Overload that Affects Holidays:

Often we all have a tougher time with larger gatherings in general. There are too many people talking, giving opinions and information and searching for validation. As a sensitive person I pick up on motivations, needs and energies and I can get sick from the overload. Even beautiful emotions like excitement can overload me. This is very hard for someone to understand who does not live this way. My husband and best friend are often in awe of how I can predict a person's behaviour, motivations and beliefs. I also pick up on hidden conditions, mental stability, menstrual cycles and pregnancies. This has to do with observation, a keen sense of understanding, personality and brain differences. In tiny amounts with small amounts of people it is a great gift, but at other times it is a curse. It's also plain freaky to people who don't have the gift.

Often those with sensory overload can feel the overwhelming amounts of visual, auditory, tactile, and olfactory information that is coming from everyone in the room. Remember the last time you had a really bad flu? Picture yourself in your darkened room and suddenly someone turns on the light, another person comes in smelling like whatever you just threw up, someone else blasts some music that is high pitched, you hear talk of people who just died from the same flu you are fighting and you suddenly feel paranoid, your headache flares and someone decides that you will feel better if you are forced to walk around, finally someone comes and sits in your space and tries to talk to you while you are dealing with all of this. It sounds dramatic but that is often a typical moment for those of us who experience sensory overload in a large unfamiliar gathering with many factors involved.

Anxiety of Waiting and Dress codes Affecting Holidays:
When I was a child holidays meant dressing up in tight banded dresses, scratchy leotards or dry socks, itchy tags and clinking jewellery. Sometimes, if I liked something sparkly this would be worth it for a time but I always ended up sick. Every single holiday I was either wanting to go to the hospital or needing to retire early. It was exhausting and awful. My parents thought maybe I had a disease or some chronic condition. At the time I did not. It was simply high sensory overload putting my body into overdrive and causing excruciating symptoms. Over time these situations can lower the body's immunity. The cortisol in the body is constantly being released which is good in an emergency situation but for every day or holidays this adds up to an unwanted result.

Even as an adult, I have to remind myself to change out of clothes that are going to wear on me after a couple hours. Belts are usually not on my list unless they are cloth. I can't wear socks at anytime of year and I need to be especially resilient if I choose heavier make up and jewellery. For more on comfortable clothing tips click HERE (link). It's a tad awkward to show up in sweats when everyone else is dressed up.

The anxiety of waiting until an event is also a problem. Because of executive functioning issues I will get ready too late or too early. Usually too early. I wait around in uncomfortable clothes thinking of food I don't want to eat or could be dangerous to me, people who have been rude in the past or my mouth misfiring into unintentional insult in social situations. I have learned it's better to arrive late and get ready late. If I am still early I find an engaging show to watch while I wait or a book to read.

Chronic conditions and sickness that affect Holidays:

With Lyme, Anemia, PMDD, and Celiac my body suffers random symptoms. I like to be near a safe place if I need to lie down or feel I need to go to the hospital or calm down. Any place that involves travelling more then half an hour for a large period of the day is out. My kids are the same way. We are ok going with my husband for shopping trips to the city but we are never more than 5 hours including travel time. Our limit is short. If we do go for a longer time it means we all had an amazingly easy day and we celebrate and take advantage of that. But we can not plan for those days. Planning is awful because we have to worry about that day on our calendar. It is impossible to plan in most cases and if we do plan an event it has to be at our house, our parents, grandparents or environments we trust. The list is small.

This is what living a disabled life is like. While we are able in many ways, the world is not set up for chronically ill and sensitive people which translates into real impairments during every day moments.

We also often plan around my daughters cycle and my own. If its the week prior or first 4 days of our cycles we do not go anywhere. It is debilitating to live with such a painful, heavy, anxiety induced cycle. Google PMDD and Endo and you will get a glimpse of our monthly struggles. We also appreciate my husband at home for support during this time. Our boys bring us hot packs, food and water and take advantage of the fact that the girls are out for a few days. They play a lot of video games together and relax.We have our rhythm and it works for our family. However, if we happen to have a cycle that falls on a holiday it's an issue.

When we used to people please, my husband would show up with a few of the kids at his family's house. He claimed I was sick. Menstrual issues are not understood in our culture plus they are often hushed. On these badly timed holidays, I had to stay divided from the core loves of my life. In pain and at home alone on a family occasion. If it wasn't so bad that I could still walk and sit without gushing blood or being in extreme pain I would force myself to go. I imagine I looked even more anti social than typical. Most of the memories are a blur due to the pain. When we re-assessed we realized that it is perfectly fine to just let a "no" be a polite no without explanations. Give an explanation and people want to fix things, suggest alternatives or downplay an experience. We realized it was far more important to honour our bodies and teach our children to honour their bodies. We want our children to pick future situations and jobs that also honour the body. This is a tough situation to find in our current culture and we hope they can think outside the box of conformity to find lives that honour the journey of the body and mind.

Relationships that affect Holidays:

Relationships are probably the largest factor trumping all others when it comes to holidays. If the level of misunderstanding, previous judgment or blow ups are high, there is less of a chance we will show up. Why would we sacrifice our sensory needs for interactions that do not care to understand or do not offer some sort of love or genuine affection in return? There are about once a year exceptions but they are paid for by us and a sacrifice we make intentionally. Our sacrifice is not recognized because we still look like we are being difficult. With people we really love and have a relationship with it can be tough enough. When the people in our lives try for a small amount of understanding it's easy to make it short without insult or try a different way at involving them in our existence.

Often this means that instead of going out, we will have people to our home. We will go out to certain places. If there is a big event that matters to someone we will be supportive in alternative ways. For instance, my nephew's recent christening. We did not attend. We love our nephew and I support his mother's choice to christen him if that is what she wants to do. Our choice not to attend simply hinged on sensory and social anxiety needs and stress. Our therapist told us it was fine not to attend. Our culture puts way too much focus on big events, when the small things in life are what matter. We decided to show our support by purchasing a very thought out gift, sending our regards the day of, sharing photos on text, and making sure we got in a lot of extra snuggles the next time the baby was with us. It's not less- it's simply different.

We love my husband's parents due to a lot of conversations and understanding on BOTH our parts over the years. However, our relationship with most of his siblings is not very understanding. They are wonderful people but very different. We are also wonderful people but we are very different. Each family system has pre conceived notions of how things should go. See THIS (click) post.  We were invited to Thanksgiving Dinner at a home almost two hours away. Obviously, now the information shows why we did not attend but we made sure to send our well wishes and try to focus on my husband's relationship with this person. We understand how this could be perceived as insulting. In an ideal world, we would love to have them all over for a meal we can all enjoy like Shadasku (a Brazilian rice and beans and BBQ meat meal) at our home. Unfortunately, that is not as easy as it sounds because then it opens the door for scrutiny.

We look like hypocrites because we ask everyone to our home yet do not attend their functions. It is confusing because even parents who have children with sensory needs, have a tough time understanding if it is not in themselves. In the past, explanations led to further mess with a couple of people. Once we were even told that brain differences are no more than sin and selfishness and we are using our differences as an excuse to be difficult. Ironically this was not used on our niece with Down Syndrome yet with Autism or Aspergers, which can be perceived as simply personality quirks, it was an issue. While Down Syndrome and Autism are VERY different in many ways, sensory issues are often shared and understood by both sets of people. But with the mindset of sin or excuses, meeting in the middle is impossible. Who can argue with a set belief in God and sin in someone else?

With the rest of the siblings our plan was to try to work on each relationship one on one IF the person initiates and keeps it light.  If respect is in the works, maybe things will change. My husband has more of a right to respect then I do and we basically try to keep the focus on him. With all our religious, political and emotional differences it is tough enough but add all the above factors and even with respect we are all going to have a difficult time. We are polar opposites in most belief systems which makes even conversations about the sugar dish or upcoming elections explosive. It's sad and there may be exceptions, but life is perhaps better for all of us with distance. It's also wonderful that we can recognize this and have respect for the different ways they are in the world even if we may not want to participate at the same level. We love the thought put into invites if there is no pressure to attend. Sometimes, if all the factors are right, we may even be able to shock everyone and show up, but this is usually at a last minute level most do not appreciate.

Sensory Solutions on Holidays:

Sometimes, on big holidays we want to spend time with a group of people. Sometimes the sacrifices are worth it while other moments we make it a priority to have a stable, healthy time at home. When two factors are safe, it can be bearable. If the environment feels safe and cozy it's easier. If the bathroom is not way off from the main living area, the colours are calming or rich, and there are plenty of cozy corners to escape to, without any pets or weird smells, it can be fine for us to have to deal with a few harsher people or get through an exhausting gathering. But if the environment is bad, and we can't eat the food, and the number of people is more than five, and if most of them have misunderstood us in the past, it is not worth it on any level. It can also take a full week for us to recover or not suffer debilitating physical symptoms. Why would we want to choose this for a special occasion? If our family of five is enough for us to have a beautiful time with a few extra extended family thrown in for SHORT periods of understanding, why would we choose anything else? We realize we are viewed as selfish, but in order to be selfless in little ways everyday, and in order to be the best versions of our self, we need to protect our particular way of being.

Fear due to the world being perceived as threatening, because the brain interprets every detail differently, is painful. Getting through ONE day without any of this is a miracle. It is not fair to expect more then the daily brave. Sensory people are BRAVE. We sound high maintenance and like cowards, but nothing could be further from the truth. We show up for life everyday even though it scares us. We face tiny moments every day that induce pain. We are pressured to normalize and be anyone but ourselves. We are put to shame, blame and ostracism. It is not fair to put ourselves in situations that further complicate this.

I try to remember my children can have their own set of sensory issues. Children have more resilience in general. Sensory issues often become worse with age. I handled sensory best in my teens and was able to do a lot more than I can handle now. Childhood was tough because of the lack of understanding but I think if I would have had more breaks, understanding of myself and familial awareness I would have been less sick and would have had more memories not blurred by the sensory. With knowledge and awareness my children understand themselves and most of their triggers, thus their longevity and endurance is stretched beyond what my meltdown point was when I was a child. They also have time to dissect at home which means they do not have to dissect reasons with others.

Most healthy sensitive adults try to find the balance of slightly pushing ourselves in an inhospitable world yet also allowing peace and Being. If we begin to respect our differences, hopefully over time, our children will learn and maybe others who are in our lives will begin to respect us for who we are, instead of how we are supposed to be.

Thanksgiving can be terrifying for those with special needs or sensitivity. A little understanding can go a long way. Built in quiet time, a plate of a child's favourite comfort food at the main meal instead, or a light walk outside while everyone is visiting may be a simple way to at least cause the least damage. Regardless of where the holidays are spent, having ONE person share the perspective of the sensitive person, goes a long way.

Besides the differences in perceiving the world, sensitive people live full lives. There is the flip side of the coin where we experience beauty on an extreme basis in little things. The sound of music can strongly soothe or a visual experience can lift us to heights of appreciation. We experience transcendence in the daily. We have places we belong. We don't feel sorry for ourselves once we understand that these are simply facts that are part of our existence. Because I understand myself I no longer feel like a victim of the circumstances. There are times I feel more vulnerable but often with awareness I can keep my life empowered. I can also enhance the experience of others. There is beauty here too.

Wishing you a holiday of peace and understanding!

* An excellent book on sensory solutions is: http://www.amazon.ca/Loud-Bright-Fast-Tight-Overstimulating/dp/0060932929

UPDATE: Nellies Laundry detergent from Costco online with the Lavender Eco Detergent from Costco Warehouse solved my laundry woes.:) YAY!

** I obviously do not agree with making a child or adult with sensory needs participate in "normal events" and I definitely do not believe in making those with differences assimilate into the majority but I do understand that sometimes we WANT to participate or the family has no current alternatives. Until you figure out alternatives to make all of your family comfortable on holidays, here are at least some tips to make the "normal" experience of Thanksgiving more comfortable for those with sensory needs:http://www.brainbalancecenters.com/blog/2013/11/6-tips-to-help-kids-avoid-sensory-overload-this-thanksgiving/

*** If this post helped you I wrote a post about Sensory Sickness ( a more extreme version of sensory overload) and Halloween: http://worldwecreate.blogspot.ca/2015/11/explaining-sensory-sickness-and.html

An InLinkz Link-up

This song explains how I felt once I understood my sensory issues haunting me. The time period before I found out how I worked feels like a nightmare punctured by a few good times, where as now, I am not blind anymore and most of my life I spend in a beautiful reality because I am now wide awake:

If you need strong sass this is the song to fortify your decisions:

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

Musings On Solstice And Autism (yea I am weirdly tying them in together)

I prefer to think of Winter Solstice as Mid Winter up here in Canada...and not the beginning of Winter as it is said to be. Starting tomorrow days get a little brighter, and Christmas with it's sparkles and joy (on good years anyway) is just a few days away. If one suffers from SAD, this tends to be the time, that hope is seen around the corner. Weather is regional anyway, so I do not judge my weather by the supposed "official" seasonal times of the year. However, I do love Solstice. If we were to have had another girl, Solstice would have been her middle name. Despite how hippie that sounds, it brings meaning... Meaning of beginnings, of beautiful endings, darkness and light, and of the rhythm and flow of life.

Yesterday, I was having a dreary day so I decided to make something of it. I mustered up the strength to fill the house with the smell of cinnamon and baking. At first it wasn't too fun but eventually my mind was triggered and a feeling of safe, childhood feelings was evoked. I cleaned the house to innocent Christmas songs of peace and helping the world at large. The Christmas tree was glimmering and I forced myself to sit in front of it, inhale deep breaths of the spiced air, and stare at the lights the way I used to when I was little. After a few minutes, my forced reverie turned into a natural state of wonder. For a fleeting moment I had to remind myself I was not wasting time, but only for a fleeting moment, because my practical side does not often win when my childlike joy of beauty is in competition (probably because I tend to live in my practical logical way of Being more- but that childlike wonder is STRONG when it does show up.) I don't know how long I savoured this moment, it felt like forever and also like an instant...a very good sign that I just WAS, and in BEING I AM.  The lights shimmered and my soul sighed. Yes, there are bad events, life will bring my own share to my door and has in the past, but there is also the good. The good of simply forcing yourself to BE in a moment, and in BEING suddenly you ARE. Any Solstice reminds me of this. We do not mark them with huge events, but we make sure to have a form of light purposefully set (a fire, candles, the fireplace) and to take some time to BE in whatever state we ARE.

I felt my child self at five, sitting in wonder, care free to the worries of the world, and enjoying the fact that I could stare at a tree for hours and not be told that I was wasting my time. Peace is for everyone, if only for an instant. Crimson is in the embers, bells are tinkling, and the snow outside is melting ( a refreshing change from our LONG blustery winter last year.)

I have two sides to myself...most Autistic people would describe themselves as a Paradox. Part of my brain is logical, practical, reasonable, assessing and in tune with continual new concepts...it is open to constant evolution. It's the side that is often shown to myself on a daily basis but is hidden when I am uncomfortable or not accepted. I can come across quite ditzy when my brain is actually a phenomenon. A metaphor for those who do not understand would be similar to Sheldon on the Big Bang Theory (except a lot more complicated and less straightforward.) Half of my brain really relates to Sheldon. But the other side of my brain is mystical, childlike, overwhelmed with sensory data, the source of my clumsiness and inability to feed myself, and the place that causes me to automatically clap and squeal when I am filled with joy. I could not stop this part of myself if I wanted to. Perhaps it comes out a little less in the daily but it shocks me how often it shows up in  unsuspecting moments. 

It's the reason why I still cry at the song "Where are you Christmas?" or why I look forward to the Muppet Family Christmas EVERY year. It's the part of my brain that forces my logical side to step aside for a moment and to STOP assessing, stop reasoning, and for heaven sake stop criticizing every philosophy or thought or perspective from each angle and just ENJOY. While I do believe there are certain gifts that come from being able to step outside boxes, think from another person's perspective (even the craziest person or the seemingly most mundane) or critiquing philosophy or religion, sometimes it can get a tad exhausting. There are times when I find it wearing to be the one who has to rise yet again to put myself in the other's place to extend grace, and find that they can not replicate back in quite the same way. There are times when it is slightly jading to be able to say in my mind, "I have already been through that transition that you at 60 are going through and it happened to me at fourteen." It may sound pompous but it's just a fact, a fact that leaves one a little more alone if not in the company of those who share this brain state, and a little bit misplaced. It's also disheartening because it can not be shared or stated unless in the company of others who KNOW because people just take it as attitude, judgement or haughtiness. Most do not see this as genuine. They also get  confused by the juxtaposing paradox. Who could really be truly like that? It seems to conflicting, but I know it to be my truth. There are perks to having a paradoxical way of being and some of them are quite enlightening.

My point is, that my childlike side that also can seem to the world like the "worst" part of Autism can actually be quite a gift. Sure, being subject to sensory overload can be painful at times, but it also opens my eyes and triggers my brain to the state of a child. Like the Solstice, there is dark before light, and there is a transition time. There is a moment when all that is needed is a shift. Yes, being clumsy from executive functioning issues has it's downsides, but it also forces me to stay humble...willing to take help where most 31 year old women do not need help. Not knowing left from right or not being able to wade through verbal instructions forces me to compensate creatively to get through the daily. It's not all sparkles and Christmas lights, but it has it's moments or CAN if I choose to see life that way. This is where hope comes in. Hope is found where BEING is. Hope is found in ACCEPTANCE and LOVE. It is found in the darkest of places where light is needed. Hope is an ending needed for another beginning.

This is where Solstice hits my heart. It's a reminder brought in by the earth that I am enough, I am what I am, and there is beauty and brutality in BEING. Life is here now and I must rise to that.

Wishing you the beauty of sacred beginnings and necessary endings on this Winter's night with you.

Disclaimer: I am not literally saying Autistics have divided brains NOR am I actually explaining the scientific theories behind Autism but I am describing SOME of the general consensus among my Autistic friends and I about how being in our brain feels...and the general feelings I have about myself and how it feels to me in simple terms.

This song is my Winter Solstice song and evokes all the emotion beautifully in it's imaginative, descriptive and romantic lyrics:https://www.youtube.com/watch?v=UV4F2yfEt9o

*To see more thoughts on Autism/ Aspieness click on the Autism/Asperger's label below...there are posts on  Creating Autistic Safe Havens, Aspie motherhood, Feeling Younger While Getting Older, The Consequences of Growing an Aspie up to reality, Gender Bias in Psychology, Famous People speculated to Have Autism, Hurtful Misconceptions about Vaccinations, What Autism Means to Me, Guest Post from Samantha Croft on Aspie Communication, Disclosing Autism, Autism Positivity/ Autistic Healers Flashblog, Sensory Autism experiences at the Zoo, Autism DOES NOT cause Violence, Dealing with and Understanding Meltdowns Autistics Don't Need Your Awareness and Other Crucial Links Doesn't Everyone Have a Little Autism in them? (And other Wounding Statements Addressed)

Dealing with and Understanding Meltdowns *Link* Being an Autistic Parent to an Autistic Child

Update 2021: This was the last meltdown my child ever had...Years later, he is my most responsible, easiest child and sometimes I wonder if these stories were a dream...He put in the work and being at home was the best thing for him.

One of my children is particularly verbal. He has been since month nine of his existence. Sometimes because of this factor, he seems more able and wise beyond years at times.  An old soul. But in life there is always a double side, and with this verbal prowess comes the tendency for people to assume he can handle more than he  can at his age. Myself included sometimes.

They may sound old, but he has the same struggles I do, in varied ways. I try to remember that his pre frontal cortex is still developing at his age, so even if he sounds like a grown up, he may still struggle with accessing his reasoning side of their brain in a more grown up way. He thinks because his arguments sound good, that he must be mature...yet he is not old enough to constantly remember to put relationships BEFORE issues, with important people in their life.

His magnificent ability with words can both heal and wound. Unfortunately, because of age, meltdown mode, sensory issues, and OCD anxiety, he can sometimes be brutally raw and sometimes cruel. He can cut to the heart of the matter and see things in people they do not see in themselves. But the delivery does not have the maturity of restraint. He knows he owns partial truths but does not realize yet that there is always another aspect of the equation which is why after a meltdown we have a "therapy session", once calm, to promote growth in this area.

To date, this has been the toughest year of his young life. He may be a quicker processor in some things, but emotions take more sorting out. Chaos is not welcomed and creates distress in his brain. I understand this because it's my life story too. I am constantly applying understanding of my brain to his brain. However, even being an Autistic myself, and applying this knowledge, we end up mis communicating. He has had the toughest time with me this year. Partially because I am a safe source to act out against. A mother's love and all that.

Last week we had a breakthrough. It was after a yogourt container was thrown across the room when he was mad at a trivial change in plans, and it exploded all over the kitchen. The meltdown was beyond control at that point so there was screaming, hurtful words thrown all over anyone who was in the room, and finally a running down the stairs and slamming the door with the sound of the lock click as I followed quickly behind to make sure he was  safe. The screaming probably disturbed the neighbours this time...For myself this is also very hard because screaming insults my sensory needs as an Autistic. A normal mom would be bothered but for myself, it triggers my crisis center and it takes all my self control not to meltdown myself. In the past, I will admit, that there have been about four times when I have started to simply cry or plug my ears and yell over the noise for him to go to a safe place to scream. Generally, I try to keep it together until after but my face flushes and my heart rate is high.

This time I was extremely distressed. I called my husband at work because often my son will not come out for hours and may spend them all screaming. My husband and sometimes mother are often the only ones who can cut this time down. I can't. Maybe because I understand and also partially because my mother and husband are NOT autistic so they come to the situation with another perspective. Sometimes I need to do damage control for some expectations of behaviour I know can not be met during meltdown that are expected from non autistic individuals. I have to mediate, but generally, because of my education, they understand him too and mostly are in tune with what he requires in these moments.

My husband was unavailable so I was on my own. I took a few deep breathes, stopped my teary eyes from thinking about the words that were spoken to my soul, and reminded myself that I was the adult with a bit more regulation. I knocked on the door and said loudly over his noise, "Once you feel more in control after melting down, you must unlock this door and once you get to a point of calm we need to talk." Later, I came back to a calmer guy. He surprised me by unlocking the door right away and running to the bed to put his head under the covers. This was a big step that I did not have to wait for my husband to force the lock. I sat down and said calmly, " I understand that you were triggered into meltdown. You were distressed about the small change in plans and I should have seen the signs that this would bother you more today. However, while I understand your behaviour, I also am unfortunately both your teacher and parent. Some behaviours you would be expected to learn at school are skipped at home. I need you to learn some regulation for not just others safety but for your own. I know you can understand what I am about to say but I want you to ask any questions if you do not. Here is the deal. In grown up life, our goal is to enable you to have a safe life the way you wish to live it. But in grown up life, if you are working and you break something, you have to offer to pay for it and clean it up. If you have a meltdown you need to get to yourself to a safe private place, allow yourself 15 minutes of unregulated emotion in that place, but then take responsibility if there was missed work or any damaging words said during your meltdown phase. One you can not help, the others you can."

At that point he said, "I know, I already thought to offer to pay for the yogourt." I replied with, "Good. I am proud of you for that. And it was a full container. It can come out of your allowance because this is an important lesson to remember. You will also be cleaning it up though your sibling cleaned up most whilst crying. The things that were said to both me and your siblings were not exactly kind. I know you didn't mean half of them and some of them were probably half true, but the delivery needs work. On top of the natural consequences of life, where as you make a mess, even accidental, you are required to offer to pay for it and clean it up even if the other person let's you off the hook - you still offer, but besides those consequences, here is the deal- you used an object and just missed your sibling. You grabbed the closest thing in front of you. What if that would have been a hammer or a knife or some sort of weapon? In your haste you could have done something that you would forever regret. I know you. I know you have one of the sweetest hearts in the world but you need to learn regulation. There are people in the justice system or jails that do not deserve to be there. That did nothing out of malicious intent but out of lack of control. I know you would never suit a place like that- it would kill your soul. Part of my job is to teach you how to regulate enough to be able to avoid situations like that. Unfortunately, the world is full of small minded people with enough power to make your life a living hell. You need to keep your inner circle safe. I'm not saying this to scare you but because I think you are wise enough to realize that as you get older, you will need to be aware of your emotions and control if you can. I am not saying you have to stop melting down. I still meltdown. I am saying you have to learn safer ways or places of doing this."

He replied with sobs breathing of, "That makes sense I guess. I was soooo upset. I still am."

"I know honey. Some of that was my fault for not preparing you with the change of schedules. I am SOOOO proud of you for unlocking this door and letting me talk to you so soon after you were upset. This shows how your regulation is actually a source you can use. More than the physical, you also used the emotional and said things that maybe should not have been said. Hurtful borderline cruel things because of a change in schedule. I understand that this was more than a change in schedule to you. I understand this year has been so hard on your little soul and you are still processing...but we also, if we can manage to understand this much, have to understand or at least be aware of what words can do. Words can heal or hurt. It's ok to use them to wound sometimes. It's also ok to be human and make mistakes. Words sometimes will cause a change that is good even if they hurt at first. If you are in a meltdown, it is imperative that you listen to a trusted source to move into a bathroom or a private place of safety to finish melting down...or if you sense one coming, as you get older, you can maybe try to do this for yourself. Because of the hurtful things that were said and how you feel bad about yourself currently, I want you to write three letters to three different people. Anyone you wish with any subject you wish. They can be as short as two sentences. I would prefer them to be towards someone you think may need some encouragement or gratitude but if you can't think of that, even your siblings are fine. I will give you a full week to do this but I want you to see the power of your words when they are also used for good. I think it will make you feel good as well as others."

"The thing is sweetie that you have a writer's soul. You are not a bad person. You are not even fully in the wrong here. You basically just have a little bit to learn...as do we all. Heck, sometimes I respond completely wrong. My regulation after thirty plus years and 12 years of therapy still isn't up to speed at times! SO you are actually doing pretty good! But this is a situation, as not only your mom but your teacher, that I am required to somewhat address. And you know what I think? I think it is neither good nor bad but neutral. I think you have a writer's rebellious soul! Which means that you can be a great change maker or a creative thinker or a natural society challenger. Your words can end up making the world a better or easier place for someone out there. And also yourself. The first thing a writer changes is themselves. Writing is healing for those who have it as their gift. I have seen your lyrics- they are better than some I have heard on the radio and you are less than half the age of those writers. You can cut to the heart of the matter if you wish. So in this regard, I look at the words you just yelled at all of us upstairs, and I see a lot of creativity, some truth and a bit of exaggeration. Not in a bad way per se. Your exaggeration was true to your heightened experience at that time. It was your truth but you need to remember it may not be your audiences' truth. I was hurt. So were your siblings but we also know deep down that you didn't mean all of it or your delivery of it and we are ready to move on. Now, I have given way too much information for your developing brain to chew on so I will give you half an hour of quiet time before I require you to come finish cleaning up the yogourt...if it dries it will just require more water....see you in a bit and I love who you are."

Then I went to my room, took some stabilizing breaths and let a couple tears fall. I can not touch him even for a light hug, when he is in these moods. It would feel like an intrusion. He will hug me usually hours later. I have to wait for him but as a mom, sometimes that is hard.

I wish I could say the next day went a lot better because of our conversation. The rest of the day went well. He did remember aspects of our conversation. But it has been two weeks since that meltdown and though they have been less violent, we have had every day incidences since. However, I see that he is wearing winter socks, pants and sweaters in plus 25 Celsius heat. This tells me that he is in a OCD anxiety phase. Everything feels like a threat to him. He is on high alert. Most days I let the meltdowns take their course and carry on. I also sometimes ignore them when I am terribly tired. I am not mother of the year.

The other night I was wracking my brain trying to figure out what I was missing...I still felt like him and I were mis-communicating on some crucial level. Then I read THIS and felt a shock at, " I feel their frustration at being expected to conform to a standard of normality that is unattainable. I get that they are tired of trying to communicate and being unheard day in and day out over and over again. I know that it is soul destroying to be forced to comply with instructions you don’t understand the reason for or the actual steps that need to be taken in order to comply. See, the reason autistic kids are seen to be a problem is that they don’t comply. They can’t comply."

Oh my word!!! Was I being like all the people who have misunderstood me??? Was I suddenly akin to the teachers in this regard to my own child? Was I expecting a level of conformity that may be unattainable? Is he communicating and being unheard? AM I HEARING HIM?  This made me pause for quite awhile and triggered a memory of a four part post I had read from Musings of an Aspie on Executive Functioning. I went straight to the article and read all four parts ( FOUND HERE.) Then I read it to him.

This is when we had the major breakthrough. I realized that the areas I mainly struggle in Executive Functioning are generally stronger areas for him like Memory, Planning, Organization and Attention. But the areas I am generally stronger in are weaker areas for him like Inhibition, Problem Solving, Cognitive Flexibility and Monitoring. Of course we will both struggle in all of them depending on how uncomfortable we are in a situation. At home, where we feel safest, we will have our strength areas.

 For some reason, because he is so good at planning and organization I missed that their executive functioning was misfiring. I assumed he was just better in this area than I. Add the INTJ personality type into it, which is good at planning and organization but quite rigid in beliefs and thoughts even if it is a intellectual and researching brain mode, and we had a recipe for extreme inability for flexibility...especially at his age level. Finally, we found another layer to the issue. He understood most of the four parts of executive functioning and we had a great conversation about the material.  A few days later he melted down at another change in plans but it was a small meltdown. I was able to actually say, "Look I'm sorry. Remember that EF article? Remember that my weaker areas are planning and organization? I am not going to be the stability you crave in schedules. I try because I am the adult and your mom and a teacher...but I'm also HUMAN. That means I will make mistakes that WILL affect you. I am sorry this affects you so much. It's an area I work on but it's also a disability which means that I will NEVER fully get it and should not be expected to. I will try where I can try and that's all I can promise you. You need to have grace for me and I need to have grace for you. I'm sorry. Also add my INFJ bohemian personality type and I WILL rub you wrong in this area at times, but I am also a good match for you if we can work together. We both have opposite areas of strength and weaknesses but we are also perspective taking personalities. This is where we both agree. We are future orientated and enjoy literature and wisdom. IF we focus on what we DO agree on and try to work with what we don't and allow for each other's disabilities, do you think we can find a way to navigate at least maybe two days a week in peace?"

He was quiet during my whole monologue. I am lucky my kids sit through and understand most of my long communications. I also do not talk to them on a child level so I am also lucky that they try to understand some of the words I use. He responded with a hug. A HUG! I tried not to weep or make a big deal of it. I tightly hugged him back then let him go with a light smile and, "Ok, since I changed the day what is one activity you can't live without? What made you upset? Let's see if we can work it in somehow and meet in the middle..."

 Being an Autistic parent to an Autistic child or children in my case, though there are massive differences in gender, personality ect., can be both easier because of understanding and tougher because of the same understanding. I think in general it gives me an advantage with my children, but there are times when, if I am in sensory overload or EF fail myself, that it requires even more for me than I can sometimes give. Every night I go to bed thinking of how I can do better or where I went wrong. I am learning to let this go and remind myself the same thoughts that I told my son...I am HUMAN. I am not Wonder Woman, no matter how much I desire to be so. I am not and should not expect levels of perfection from myself or from anyone else. It starts inside. It starts with my willingness to accept my own disabilities and flaws and normal human frailties....and then I can go on to celebrate my strengths, my beautiful messiness and my gorgeous quirky moments. This is always what I end up going to sleep with. Then I wake up and try all over again.

Oh and here are the beautiful notes we ended up with that he brought up without any help.  He is behind  on the actual physical act of writing on paper (dysgraphia) but typing on the computer he can sound like an adult with their Lyrics which unfortunately I am not allowed to share but here are the notes. He picked three adults that had a tough year too. Auntie D has stage 4 cancer- she wept when my mother sent her a picture of the card and said " Mom told me to look at my iPad cause I haven't been on.. brucie and I are weeping! You tell auntie Donna is fighting hard and that is is the most beautiful card I ever got in my life! And tell him  it has lifted my heart and soul to the heavens 💝💖💞🌹💕❤️💜🌺Tell all 3 how very much I love them".  I told him to enjoy the beauty the words created in another person. Grampy just lost his wife last year. Nanna's sister and mother got diagnosed with cancer. He came up with thinking of each of them. I also did not correct any spelling or grammar mistakes because this was about heart this time and he wished to be alone to write without any guidance.:

Above: "Dear Nanna; Thank you for buying us groceries and letting us sleep over at your house. You are the best Nana I could ask for. I hope you are doing Ok. Love "

"Dear Auntie Donna: I love you Auntie Donna. You're such a fighter. I hope I become just as much of a fighter when I grow up. You are such a good example to be strong. Love ."

"Dear Grampy: I love you Grampy. You are such a brave and strong person. Especially considering the last year. I love the suppers we have shared through the last months and the board games we play. I love you Grampy and I hope the next few years are easier. Love ."

I was misty eyed reading them. This child, like all children, is so complex, layered and beautiful. I am honoured to help guide when I can and witness what I am here to witness.

Through out life, those with differing brain wiring or genetic composition, have to assimilate for the majority. Some issues simply need more awareness, preparedness and understanding. Take meltdowns...

I have been accused as manipulative, bossy, controlling or harshly grumpy when I was simply in the throes of a genuine meltdown and doing quite well considering. I also can come across quite witchy when overwhelmed. The following link impressively covered every kind of meltdown and the reasoning behind the brain’s reactions without boxing anyone up.

He bawls his eyes out often thinking he is a mean person…when he is the nicest, truest, purest heart I know…he just has lots of meltdowns and is still learning about himself. This link is VERY important to read for engaging with anyone who is Neurodiverse. Meltdowns tend to happen with differing genetic conditions and different brain wiring too:

http://inneraspie.blogspot.ca/2014/06/helpful-guide-to-understanding-meltdowns.html

Highlights taken from the above link at inneraspie:

"I can list a few different general types, and triggers so that you might be able to gather some info from here to possibly compare to your own situation. One thing that I heard once from a behavior specialist is that a meltdown is like a seizure in that you cannot stop one once it's started. You can make one worse, and you can prolong it's effects, but once the brain has reached that tipping point it is over. You can't unspill the overload, which is is to me what a meltdown is. It is an acute reaction to too much happening all at once, in which the brain has no way to cope, or contain. The excess must go somewhere. From what I can gather there are three main categories of meltdowns. Sensory, Executive functioning mishaps, and Emotional."

***

"Sensory: This is probably the most common. A meltdown caused by too much sensory input can be sudden, and out of no where, or look like a pot slowly about to boil over. A noise that barely bothered the person last week suddenly seems to push them over the edge this week leaving everyone confused, at best, and accusatory (as in viewing the autistic person as if their reaction is geared towards manipulation) at worst. "

***

"There's so many factors that play into this type of overload that it is hard to even catch it all here in this paragraph. There are some noises, and sensations that always overload some of us, and there are some that we can tolerate if we are having a good day. There are some that we can tolerate for awhile on a good day, and some we can tolerate alone, but not mixed in combination of other sensations. Sleep, hunger levels, and something as simple as one tiny routine change, or confusing social encounter that day may all lead up to usually tolerable sensory experience being intolerable...The autistic person needs to trust that you will keep them safe, and that includes their sensory system."
***
 " He is 12 now, and is pretty good at dealing with surprises, and typically is more flexible than I am at handling routine changes.I must note, I was brought up in a chaotic environment where no consideration to my need for sameness was ever given. Any upset that I may have expressed over wanting something to be the same, and planned out was viewed by my parents as manipulation, and they would purposely withhold whatever it was I was requesting to show me I 'wasn't the boss'. I cannot explain how much damage this did to me anxiety wise. Please, don't do this."
***

"If you are with an autistic person when their routine suddenly changes be calm. Don't try to explain to us how we're being unreasonable if we begin to get upset. Calmly, and kindly let us know what our options are. How can we proceed? We need to know that, and sometimes need a minute to process it all. Try to warn us of any changes way ahead of time. Respect that it is hard for us to process change at last minute."

***

"Also, please be as consistent as you can..... Odd as it sounds, too much happy can also cause meltdown, too. It is an emotion after all, and too much of it at once can be too overwhelming for us at to process. I find this kind of positive overload to trigger a meltdown that occurs after the event that made the autistic person so elated, happy, or joyful."

***

I also have another child who is autistic but they are pretty much a mellower version of me. They also have a natural ENFJ Mother Teresa sort of personality so they end up being probably the more stable presence in the household on most days. They also fall through the cracks sometimes because they are the most balanced. My point in mentioning this is to show that each situation is unique and sometimes parenting an Autistic child is easier, depending on all the varied factors. The ENFJ struggles are more involved in severe anxiety issues and feeling a general sense of "nerdy quirkiness" in the outer world, but they feel completely comfortable at home, with me, which makes life at home infinitely easier.

Birth order also plays a part as well as gender. There are MANY factors that play into all of this. I also could write another post about being a Dyspraxic parent to a Dyspraxic child which is a whole other ballgame. I find it something I can handle on most days, oddly, because Dyspraxia is actually more of struggle for me in the day to day disabilities. It is also probably because our dyspraxic child is a marshmallow of kindness, so it may be easier for me to help out? (Another post for another time.) I also want to state I adore ALL my children. I like parenting most days and unschooling for the most part. But sometimes it gets to be a little much. I DO have autistic traits and I DO struggle in varied ways...and I hope this can help in some way...And yes those dark circles have three layers of make up and are still showing...

How I deal with My Meltdowns Of Self and my Child:
When my hubby didn't answer my phone calls at first, when my son was melting down, I ended up ranting a text message to Hubby about single parenting most of the year and how I am literally going to break into pieces of a fragmented self. Yes, he tends to chuckle at these texts with me in hindsight later but at the time I am very serious about quitting my entire life and becoming an Ostrich. Apparently, I am funny when I am distressed. Part of it is a coping mechanism. But yes, you heard right, I said an Ostrich. I will often picture myself as an Ostrich, imagining the joyous bliss of burying my head in warm, enveloping sand. Writing it out, I realize it's actually not that comforting of an image. Things I hold on to for years can seem different when I write them out, and suddenly I am realizing that this being an Ostrich is actually not appealing at all. I didn't think the Ostrich theory through... Ok, the feelings I had when thinking of being an Ostrich are probably similar to picturing oneself in a cocoon of quick safety, able to escape the world at large with a quick action.  I've got it! A HOBBIT! It's not an animal but it's not exactly human either. Yes, that is way better. I will picture myself a Hobbit, shutting myself into my Hobbit hole and bolting the bright yellow door, sitting by the fire and eating bits of yummy cheese, fruit and meat while sipping on comforting tea. That feeling right there is what I felt also when I was an Ostrich. That borrowing under ground sort of thing which a Hobbit does nicely at conveying. 

I quickly rubbed my eyes, took a few deep breathes and did what I do when I am not safe enough to meltdown in places- I go into trauma emergency mode. I shut off. I shut down. I tell myself that I will process and feel the emotions later but that my child requires my unemotional attention. This means that later I am going to be a mess, but for the time being I am the perfect little robot. I can pretend to be in good humour, I can smile even though it doesn't reach my soul, and most importantly, I can get through the motions. Once I put on this pretend body armour of metal technology on, I walk into the room and press parent mode on my inner psyche. 

Next, I monologue. Monologuing is an important part of this equation because when I monologue I am in writing mode. My children know not to interrupt mommy when she is writing or monologuing. If I am going to be harsher, it will be when I am interrupted in these two activities. Why? Because I am in FLOW, I am getting words and thoughts out that I normally have trouble expressing. The words that get stuck for days, that I know I am feeling but can't fully explain until the computer is in front of me, or I am in a verbal monologue flow triggered by some great insight, are suddenly there and I need to get them out. 

This monologue ish way of mine serves me well in crisis situations with my children when I am expected to have a game plan. I have NO IDEA what the game plan is going into a situation. I did not know I was going to give my son three letters to write until I was halfway through my monologue about the situation. It's kind of like the Internet. I am talking but I am accessing all the stored information in my brain pertinent to the situation. In this case it was parenting books I had read, triggers from posts about autism, stuff I have written, and general movies I have emulated that all came together to focus me on what I wished to convey. I am often proud of myself after these moments because I DO tend to randomly parent effectively.

Unfortunately, this isn't always the case. If I get interrupted or if I'm over tired or sick, I can't monologue. Which means, I will not be effective at communicating what needs to happen... Sometimes my children will literally be dealt with a FULL WEEK after an incident. Once I have processed effectively, come up with a plan and maybe been triggered into thinking about the incident again, I will seemingly out of nowhere suddenly "deal" with the situation. This causes some confusion though they say they are used to mommy's random musings, lectures, and out of the moment game plans. There is usually a collective "Uh Oh" when I utter the words, "Here is the deal..."

Yesterday there was another incident. I ended up actually sliding my child across the floor in their slippery socks, by force to my mother's room. I was lucky we were there and also that the floor was slick hardwood because my child is WAY stronger than me. I was DONE. I had done a favour for said child, and they were mad because I brought a book, just in case they wanted to read, from our house while they were being looked after. The book was thrown across the floor with, "I told you NOT to bring my book. I told you I am not going to read. Now I am not going to read that book EVER again. You are a horrible parent. You don't listen..." rant, rant, rant. I was tired. I was on my way out the door to spend the day with my husband and ENFJ child in another city. So, after squelching my great urge to smack the child- which I NEVER do by the way, but I have to be honest and say that the thought does seem tempting at times, I firmly said, "Ok let's go talk to Nanna. I can't handle this today." To which the child fought me so I dragged them by their sleeves across the floor to the room because my mother was not responding to my calls. Yup, not my best moment. The child was not hurt and in another circumstance they probably would have had fun sliding across the floor in socked feet. 

My mother mediated right away and immediately my child stopped physically fighting me, but the defiance was a whole other matter.  She explained that they were not the boss. Something I am uncomfortable with as I don't like being the boss or pulling any authority cards in general. I am a guide as a parent but I like to give my children freedom and equality whenever I can. Probably why my child thinks they do run the house...downsides and benefits to everything I suppose. SO I cringed at that statement but let her go on. The child interrupted with, "I said NO to her before. I said NO. She should have listened. It is MY book and MY brain and I don't want to read." To which my mother replied, "Sometimes parents get to choose activities for you that they know you will benefit from. I asked your mother to go home and get the book for you to have just in case. She went out of her way to grab it and it's simply an option. You should tell her thank you and let her go. You also need to say sorry for what you have said to her..." The discussion went on for ten minutes and blatant refusals to say sorry. I ended up leaving because I was fighting back tears and the child was clearly not in a mood to communicate. I left them in my mother's capable hands, muttered the obligatory leaving the house to go on the road, 'I love you,' and left.

My mom's texting conversation lasted the first ten minutes of the drive, and then my ENFJ child and husband had to hear my monologue for the last 45 minutes. That is how long I took to begin to "normalize" and not be in a heightened state of emotion. An HOUR. Even then, it takes all my self control to stuff it when my other child says, "Ok mom. It's time to move on. He is not here. Let's enjoy our day and you can think about it later." Point taken.

Here is a snippet of my mother's texts:

Me: I've fantasized about boarding school so much lately. He breaks down to me every day. Every day since January. 

Mom/ S:

You've had good days too.  Remember when it's hard that you are seeing things through your autistic eyes and it seems it's always hard.Those are the times when you forget all the positive and good.Boarding school would break him. He is ok with you too.This will pass and you will get through it.  However, it is also why you need breaks sometimes. Those times can even be Hubby taking the time when he's home to be with and talk to him about growing up, respecting  mom and women in general, respecting those in authority, etc. all while spending time doing something with him. Sometimes with the other kids but sometimes one on one.. at a difficult age, starting to become a grown up yet still a child. Changes in body, emotions, etc. Those all affect more because of the autism.  You will get through this. You can do this. And you are doing this. Sometimes you may not always respond in the best way but overall, you're doing it with grace and beauty. You have a lot of that, you just forget sometimes when you're overwhelmed.

Remember, you are a great mom, you're doing a good job and you're entitled to times of frustration and breaks away.  You need that. All of us moms have times when we wish we had responded differently or we wish we could take back some words we allowed to escape but the good thing is that we are human. We recognize that we don't always have all the answers but we plod on doing the best we can. With you, the best you can is a pretty darn good job. So take a deep breath, enjoy your time away knowing he is safe, you can relax and you don't even have to think about the issues that arise. You just have you time. What I meant to say was the good thing is our kids are pretty forgiving, they're not as fragile as we think and it doesn't hurt them to have time away.  It also doesn't hurt them to see how their words and actions can hurt and frustrate their parents and others as well.  That's how they learn."

Her support helped the situation but I needed more processing time. That night, after a long day, he came up the stairs and apologized for being unkind. Then he started arguing with me again about why he was right and I smiled and said, "Let's just drop it for now. I'm sure you have points but that would defeat the moment of peace right now. I actually was just bringing it as an option and not requiring you to read it but for you it's about the fact that I dared to bring it out of the house at all. It's bed time kiddo. I love you and you are special."

And then I stayed up till four in the morning stressing about life. You think I'd just take the apology and sleep peacefully but NOPE. I don't know how to be a mom anymore to one of my children. Sometimes I don't even know how to be a person. Actually, generally I feel I don't know how to person properly. I can't sleep or eat right, talk appropriately or posture correctly nor do I express normally or act accordingly or normalize to the masses. Some days I celebrate this alien status. At nights I tend to torture myself with them. But really, I know when I feel empty that I'm fighting burn out, sleep depravity or depression ... and I fight every day for perspective that I think I'm good at and also gratitude but that doesn't change the fact that on some days or nights ... I don't know how to be a person ...

2021 UPDATE: I ended this post with more questions then answers. That was my son's last major meltdown with the yugort container, and while he had many more mini ones, and still has a few little meltdowns, he is the easiest teenager EVER. He is polite, kind, empathetic, generous, responsible and is the first to offer to do extra chores or get his school work done. He is conscientious of his words and even when he is upset, he knows when he needs alone time or to take a step back. At the time of writing this, I did not know if how I parented was working but it clearly did. I am glad I put in the work of understanding and firm boundaries with love. I am also honoured to have a son such as him. He taught me so much. His growth has been beautiful to witness. 

*To see more thoughts on Autism/ Aspieness click on the Autism/Asperger's label below or Sensory posts ( I have written about the process of sensory overload in my Halloween and Thanksgiving posts:http://worldwecreate.blogspot.ca/2015/11/explaining-sensory-sickness-and.html http://worldwecreate.blogspot.ca/2015/10/sensory-overload-on-holidays-like.html)

Also a reminder. AUTISM DOES NOT CAUSE VIOLENCE. Read this for more: http://worldwecreate.blogspot.ca/2014/05/aspergers-autism-is-neurological-way-of.html

Song Choice: James Morrison- I won't let You Go ( On a personal note I watch this video every time I am depressed and see myself lying on the road with those I know love me and it brings so much comfort; https://www.youtube.com/watch?v=sgRb_lfIZ6A)
Love Hurts- James Morrison

I also wrote a follow up post to this HERE: http://worldwecreate.blogspot.ca/2017/06/part2-behind-scenes-story-of-being.html

 

This is by Samantha and SO good for Aspergirls. I would highly recommend for any who wish to understand women and autism to listen while doing chores or watch during downtime: