Saturday, October 31, 2015

I am Autistic and Here Are Some Facts I Would like You to Know. #ASDay


I am a life loving, intelligent, paradoxical, unique individual. I am also A/autistic. (Note: if you take issue with my identity first language please read the links regarding this further in the post before addressing me.) I feel it is important to come out with my diagnosis and this post was sent to previous people who may have heard rumours but did not know otherwise. *Regular readers I apologize for this repetitive information.*

I am a very private person. I have changed my name and my blog addy multiple times to make it harder for people to find me. I value my solidarity and my solitude. Yet, I still like to put thoughts out into the world and connect with varied people like me- thus the fact that I still blog. I do not participate in large platforms of social media and have asked all of my family and close friends to keep pictures/ information of me and my family off their Facebooks ect. unless they have my consent. I am well protected by my family because of the way I perceive the world. I am not less- I am simply different. Because of the way the world is set up, I can be vulnerable. At the same time, I am also strong because of this. It's a paradox. I can be socially awkward and accidentally insulting. I can also be extremely perceptive and comforting. I value my tiny circle of support and my hermit lifestyle. I LOVE my life because of these safety measures I have taken. I prefer my blog name or nickname and often cringe when hearing my real name unless it is from people of my childhood. My family of five is diverse and enriching. I have an amazing support (see THIS post.)  I feel this is important for people to know. My diagnosis and my children's diagnosis and my husband's ADD diagnosis were probably one of the highlights of our life. We found validation, hope, explanation and help by finding out who we ARE.

I have noticed that FINALLY Autism/ Aspergers/ ADHD and multiple other Neurodiverse conditions are beginning to become more common stories. The dialogue is becoming more prominent. There are so many misconceptions about what Autism is. I hear terms like "high functioning or low functioning" thrown out a lot. This bothers me. In some situations a person who can seem high functioning can "act lower functioning" and vice versa. See THIS post. I find it ridiculous that some people ask me to "prove" I am Autistic or show them my papers. That is no one's business but my own, however, I choose to share it because how my brain works, how I perceive the world, and how I love my life are all a testament to the beauty of individual people. This also contributes to a better understanding of diagnosis and life after. Perhaps people who knew me or know me, will rethink their misconceptions of Autism?

Sometimes when a parent "comes out" with information regarding any Neurodiverse wiring, someone in the commenting crowd has to write what a unique challenge or blessing it will be for that said parent. While it should go without saying that each child is unique and a 'blessing', there should not be extra admiration and applause for a parent just because they may happen to parent a differently wired child. These specific comments come from a place of either well meaning or ignorance. Ignorance can be easily remedied and no one is blamed for not knowing something until they have access to information. Well meaning intents, however, when challenged, often cause a martyr syndrome in regards to the person being challenged, instead of individual questioning of their own self ideals and the change needed for positive conversations.

The question often comes up- who gets to speak about Autism? This blogger thoroughly discusses this question in the following link:  He covers  the fact that practitioners, parents of autistics, and the many differing perceptions of "high functioning" versus "low functioning" sometimes hinder the dialogue and it is important to consider all angles the information comes from and to listen to the varying people who actually are neurodiverse. Being autistic is relevant to my life...I get to discuss it.

The reason why a Neurodivergent (being non typically wired) diagnosis is important is because our society is set up for cookie cutter "normalcy." I have often heard the argument that "no one is normal" to dismiss my statements of individuality or diagnosis in my children or I. It is meaning to be inclusive but instead it separates us. Because our experiences ARE different and we would appreciate the validation of that fact. North America is a culture that values loud noises, constant stimulation, 'proper' language, politically correct statements, cookie cutter schools, specific religion/ christianity, extroversion and sporting events. From birth to death our culture is set up for those who can extrovert, adapt and 'play the game.' Our society treats non disabled people as the standard of "normal living." This is called ableism. "Ableism is the discrimination or prejudice against people who have disabilities. Ableism can take the form of ideas and assumptions, stereotypes, attitudes and practices, physical barriers in the environment, or larger scale oppression. It is oftentimes unintentional and most people are completely unaware of the impact of their words or actions."  Click HERE for a brief guide into the rhetoric of Ableism. 

What is the key to stopping ignorance or to challenge well meaning statements? BE EDUCATED and in turn please educate others. Read articles by the people who actually have the neurodivergent wiring. Parental blogs are fine if the parents are quite understanding and embrace the social model of disability, but to hear a first hand experience it is obviously best to come FROM those who live the experience.

I have previously expressed what I am trying to say best in this link: This post includes three wounding statements made specifically to Autistics:

1.) "Doesn't Everyone Have a Little Autism In Them?" (Short answer- NO.)
2.) "Maybe if Autistics stopped talking about their Autism/ Stopped writing articles/ Or sending me articles on how to treat them, I would just treat them normally the way they would like." (Short answer- We don't want to be treated normally but we DO want respect and dignity.)
3.) Phrases that are often said to Autistics that are rude but often born out of ignorance and not malice like "You must be very high functioning." 
Please check out this link to see why these statements are wounding and to hear better responses:

When speaking about any difference often person first language versus identity first language comes up eventually. It is politically correct to use PFL, but in the Autistic community most of us prefer identity first language. I am autistic. I use both PFL and IFL interchangeably but it irks me when someone who doesn't share my diagnosis, gets me in trouble for referring to myself or children using IFL. If it is someone who shares my diagnosis, I respect what they would prefer to be called and will use PFL if wished. See these links for more:

I am autistic. I am also so much more. I am ME. Autism is included in this because it directly affects how I see the world and it is an important part of me. My essence was not magically changed over 8 years ago when I received my diagnosis. I simply had an explanation for why life was full of misunderstanding, sickness, processing difficulties and the feeling of being 'less' then culture wanted me to be... yet my life experiences were also enchanting, magical, and beautifully different too. In cognitive therapy and through books and links I have educated myself and changed perceptions of self, but the soul essence is still the same (ever evolving) me. I have learned how to speak the nuerotypical (normally wired) language when needed or at least take a step back and understand normally wired people more often. I have worked hard to adjust to a world that does not always give the same courtesy back to my adjustments. I have also found awesome normally wired/neuroptyical people who embrace my neurodiversity or find it their favourite aspect of me. I also deeply value their neurotypical way of being. Together we are a beautiful team in life.

All these concepts/language terms/ considerations are a learning process and I don't blame anyone for not knowing these things. However, I do feel that those who have access, by knowing someone like me, with this information, should at least consider these thoughts. ESPECIALLY if you are a person who KNOWS people with varying diagnosis or have had a friend who parents a child with different wiring. We must be the change we wish to see in the world. We must read experiences BY those that experience the world differently. We must also pass these links onward. Compassion and empathy start by entering the conversation and learning the language and the culture of those who are different. Full understanding may not be attainable but respect may begin to become the norm.

*If you want to read more personal excerpts of mine or different topics I address click on the Asperger's/Autism label below this post. Also check out the links to my friend Cynthia's blog "Musings of an Aspie" on the side. *

 Happy Halloween:) I love this day because it's a celebration of all things's also possible to dress how I want and not receive any flack for it:) Stay safe and have fun!

* First Song Choice: "The Wizard and I." This is how I felt growing up...a longing to have validation and not be the 'green girl' anymore.
*Second song Choice: Post diagnosis and working through that, becoming educated in the social model of disability, I finally embrace 'my greenness'...and think it's awesome. I decide to Defy Gravity and my life changes for the better despite the fact that I still don't fit...but now I like that fact on most days.

Sunday, October 25, 2015

An open letter to Sesame Street: How an Autistic/ Aspie feels about the Sesame Street Autism Awareness: The Good and the NEED for Improvement. #seeamazing

For a more in depth look by another Autistic blogger covering Julia (to be honest I did not watch any segments on Julia because I could not find them! I found out today she is not even a real muppet!)  more specifically and the Ableism Sesame Street is allowing click here: This link puts more effort and more words into what bothered me but I could not put my finger on.  I really was trying to be positive but this approach from Erin is well balanced. Esp the part about the leash. I was disturbed but I could not put it into words. Also this post is excellent too:

When I first heard about Sesame Street's Autism movement ( I was wary. There have been many instances of people trying to advocate for Autism with good or bad intents, but instead propagating ableist language. Often I will hear a story that is supposed to be on behalf of Autistics, that give us LESS of a voice. We are often spoken about in "othering" terms or with the patronizing assumption that we are afflicted with our "condition." Because Sesame Street is a crucial part of our culture, I felt like I could not ignore their platform. My heart was pounding and my fingers were slightly sweaty as I clicked on the site. I knew if this was more of an Autism Speaks (click HERE or  HERE OR HERE for a post about why this organization is NOT supportive) situation there would be a slew of misinformation and perpetuation of prejudice in the making. To my relief, it wasn't completely this way though there were undertones of ableism and othering in a few instances.

I was drawn to the cartoon video first. Immediately I felt encouraged because it was made BY Autistics (a group called Exceptional Minds.) I became slightly teary because FINALLY our voices were being used and included in the Autism dialogue.  Because I was still feeling a tad insecure about it all, I called my children to listen. I felt a true test would be an Autistic child's feelings toward the subject. I told them we were going to watch a Sesame Street segment without any further explanation. The giggles happened right away. My eldest son ( who was the first in our family to have his Autism diagnosis) kept nodding his head, giggling and saying statements like, "Hey that's like me!" or "I don't like listening to loud music either" or "I also like to be by myself sometimes." We re-watched it again and each of them took turns talking about what they liked. It wasn't demeaning, condescending nor was it cloaked in ableist language. We loved Benny's Story.

Because that video was met with acceptance and approval I clicked on some more. I will be the first to admit I did not finish all of them so for an extensive review please see Erin's link above this post (she also covers the first person language issue well.) I was worried that autism as a spectrum may not be shown. Luckily, non verbals and verbal autistics were included. However, what was missing were adult autistic voices. My kids and I had a tougher time with the parental interviews. While the parents are definitely doing the best with their children and are trying to be autism advocates, sometimes as autistics ourselves, it's hard to hear "how we are" by those who do not share our wiring.

For instance in the video "Being a Supportive Parent (click)" a little girl with autism is shown plugging her ears while they sing Happy Birthday. The narrative focuses on how she finally was able to blow out the candles. While it is a great thing to celebrate achievements, I found myself feeling sorry for the little girl because once upon a time I WAS her. I still loathe the song Happy Birthday and even requested my in laws to stop singing it to me. I also asked them if I could open up their gift privately but then share my love of it with them later. At first I was looked upon as ungrateful and weird, but when I explained how it made me feel and what I was experiencing, they lovingly stopped singing and instead chatted with me. I opened their gift in private but then brought it out with the appropriate reactions and platitudes. When I was younger, I plugged my ears when I heard the song Happy Birthday. I even received a few swats as a child for not listening with a smile on my face. I melted down and once I started kicking and screaming. To me, the sound was painful. I also did not like being the centre of attention. The smell of smoke made me feel threatened. I wanted people to enjoy themselves and eat the cake, but I didn't want them all looking at me and directing their singing towards me. I didn't know where to look and I felt the dread of being unsafe.

In the "Being A Supportive Parent" segment, I love how the father was choked up about his daughter blowing out the candle. He is obviously a great dad and his love for his daughter is amazing. It's also fantastic that she blew out the candle if that is what SHE was hoping to achieve. But I felt like the bigger picture was being missed. Maybe she was afraid of the candle?  Maybe the flickering flame was causing sensory overload? Maybe she hated the attention? Luckily, as I became older I was able to verbalize these concerns. Unfortunately, younger children or Autistics who are non verbal and have not yet learned alternative ways of communicating may not be able to explain. My ultimate question would be: Why did she need to blow out the candle? Why do we have these traditions and typical milestones as the goal when a child is wired differently? Why is that an achievement? Yes, everyone, neurotypical or neurodiverse, needs to learn some basic cultural rules, but why does it seem that those who are neurodiverse have to assimilate more without questions?  Why can't those who are neurotypical also question the traditions? We don't sing Happy Birthday in our home unless the child requests it. Instead we ask our children what would make them feel special. If they can not put something into words, we take their behaviour AS communication. If they are melting down or seeming to space out into their own world, it is not something they are enjoying. We avoided lighting candles the first 7 years. We simply put on a colourful, happy themed candle unlit. One year it was a Elmo candle because my son was obsessed with Sesame Beginnings. He lunged for the candle with joy and it was safe to do so. The sensory climate suited his needs and everyone was happy.

There was also another aspect of the videos our family had a tougher time with. My autistic ten year old was visibly upset after this video:  He mentioned that it made him "feel like the people are saying that everyone makes more progress than those with Autism and that they have to work so hard to be with us." I know that the video was trying to offer support for parents and maybe it was not an appropriate video to show my ten year old, but I thought that most videos on Sesame Street would be safe. We chatted about how much the mother obviously loved her child and how the parents are doing their best to understand Autism even though they do not have it themselves. I mentioned that it can be hard to fully understand a different brain wiring if it's not the wiring one is born with. It ended up being a great conversation about perspective taking and empathy with my son. I pointed out that he feels the same way about understanding neurotypicals sometimes and it would be unfair for us to expect them to understand us fully if we can not understand them. We have to speak about our own experiences in the world and sometimes we will speak about those without Autism in "othering" terms because it is not our experience. We can't blame others from doing the same, but it would be validating to see more of a minority portrayal and less of the norms. We have to own our stories. It's important that we each approach, with grace, the fact that each of us has our own ways of seeing the world. He gave me a side hug after our chat and said, "I'm so glad you are also Autistic mom. I love how you understand me." It was a moment I am thankful to Sesame Street for, however, I do want to ask Sesame Street to think about including interviews with actual parents who are Autistic themselves. Also, it should not be the case, if a children's show is trying to support autism, to have to cheer up my child.

I have not watched any segments with Julia but I am happy an autistic muppet is in our midst if they do well by her.  Extra points for it being a girl. I dare to trust Sesame Street with portraying a loveable and unique muppet with autism but only time will tell. Sesame Street has done a reasonable job of including the voices of various people on the spectrum from verbal to non verbal especially in including Exceptional Minds in one of the videos. But there were voices that were missing. Where were the parents who have Autism with their perspectives and the unique ways they parent and see their child?? Where are the adult autistics? While I applaud Sesame Street for attempting a loving, accepting and normalizing voice in a world where much of the dialogue about Autism is negative and ableistic, I still would like to see more inclusion and less tones of othering. 

I love that Sesame Street included autistics in the making of Benny's video and my family would love to see more from Exceptional Minds incorporated into television.  The puppeteer that played Abbie adapted at any situation and kept the focus on the beauty of each child. When an eager little autistic girl gave her an aggressive hug, Abbie made a loving statement with some humour thrown in and my children were in giggle fits. The lovely aspect of this is that they were not laughing AT any behaviour, they were laughing with Abbie and her funny voice. I did not like that the child was coerced into a hug but I did love that the hug itself was not mocked by the puppet. I was impressed that the overall sentiment attempts were that different is also normal. 

Autistics may see the world differently. We may act differently depending on the varied sensory information bombarding us...but we have friends, rich inner lives, and abundant ways of giving to the world. I want a public television program to acknowledge this fact with sensitive dialogue, researched approaches, and the inclusion of voices actually on the spectrum.

Thank you Sesame Street for  attempting to celebrate the neurodiverse and hopefully teaching a new generation that different is not less. But I want to see improvement. I want to hear Autistic voices and autistic parents voices. At best, hopefully bullying of minorities and differences will go down because children are learning at an early age to understand different behaviours in their friends. Hopefully, parents can also learn from this process, as well as Sesame Street itself.

Have you watched the Sesame Street segments on Autism? If you are Autistic how did it make you feel? What would you wish for Sesame Street to include?

Friday, October 9, 2015

Sensory Overload on Holidays like Thanksgiving/ Christmas/ Easter.

Welcome to the Sensory Blog Hop — a monthly gathering of posts from sensory bloggers hosted by The Sensory Spectrum and The Jenny Evolution. Click on the links below to read stories from other bloggers about what it’s like to have Sensory Processing Disorder and to raise a sensory kiddo!

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:

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:

*** If this post helped you I wrote a post about Sensory Sickness ( a more extreme version of sensory overload) and Halloween:

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: