Getting to know me…

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Yesterday marked my return to blogging after a summer’s hiatus. I was going to post this yesterday, after reading this post on the blog of my friend Alex. I loved reading her post and learning more about her. I honestly don’t know if anyone cares much to know more about me, but for me, this is a good exercise in getting back into writing mode. I know this list will be difficult for me to write.

The idea is to present 20 random facts about yourself, so that people might get to know you better. 

Here I go!

1. My favorite book is “The Mists of Avalon” by Marion Zimmer Bradley, and I’ve read it about 20 times. I just recently listened to it on audiobook. I love her fresh perspective on Arthurian legend.

2. I cry about ten times a day, sometimes more. I’m extremely sensitive to emotional stimuli. Sometimes a TV commercial makes me cry, sometimes a baby animal. Sometimes it’s something I’ve read. Sometimes I cry while watching Star Trek. I always cry while watching Doctor Who. Tears do not equate with depression.

3. I was born with severely clubbed feet and had to wear braces and casts. The cast on my right leg grew into my calf, and I almost lost my leg. I have a long scar up my right leg. My feet are straight now, but this part of me was a constant reminder when I took ballet class and my teacher would complain about my awful feet. One day, I told him this, and he never kvetched at me about my feet again. I am grateful to have been able to have this problem taken care of when I was a baby. If I was born 100 years ago, I would most certainly not have been able to walk.

4. I absolutely detest American football, and can’t figure out why this upsets people so much.

5. Despite being a very quiet, introverted person, I enjoy adventurous things. In the past year, I’ve gone whitewater rafting twice, and zip lining at the Arenal volcano in Costa Rica. I also love roller coasters!

6. I have one tattoo, which I got in 1993. It is black ink only, and is a band of roses and thorns from an Aubrey Beardsley illustration.

7. When I was briefly married, my husband volunteered to work on John Edward’s campaign. He refused to do the phone call portion of it, and made me do it. This was one of the most frightening things I’ve done in my life, to be honest. I had to make hundreds of phone calls to people I did not know, and ask them political things. I was horrible at it, as most Autistic people probably would be. I cried myself to sleep every night for the month I had to make those calls.

8. I had an opportunity to move to Italy for nine months out of each year, several years ago. I almost set it into motion, but I realized that being introverted, quiet, and Autistic didn’t lend itself well to Italian culture in general, when my Italian friends told me that most people found me to be “strange” and “depressed”, including them.

9. If I wasn’t a Mother, I would most definitely have applied for the Mars One mission.

10. My favorite food is pizza, which is rather sad, because I have tested positive for food sensitivities to both gluten and dairy- and eating pizza makes me feel terrible.

11. Although I’ve made a lot of progress in terms of self acceptance, overall, I still feel unliked and misunderstood by most. I’m not sure how to ever shake this.

12. I’m proudly Pagan, which means that I have eschewed my early life’s religious indoctrination in the Baptist church. I consider myself to be a spiritual person, but not religious. I am a solitary. I try to be as in tune with nature as I can be.

13. I’m a single woman and a single mother by choice, and by a promise I made to my Son. When my very abusive marriage was coming to a close in 2010, I found out that my husband had been abusing my Son. This left him with much to work through, and a general fear of the same thing happening again. I made my Son a promise back in 2010 that it would never happen again, and I will keep that promise. I’ve also learned that trying to be in a relationship was a top source of much of my life’s turbulence. I feel it is very sad that our society measures people’s worth by whether or not they are in a relationship. I’ve never been happier, while not being in one. I don’t miss it at all.

14. I wrote a book back in 2002 and it was published. Every 6 months I get a royalty check, and that check is always a nice surprise to receive. I was recently able to start paying myself a paycheck every two weeks, so I hope to save my royalty checks towards a downpayment on a little house! My book is “Holistic Aromatherapy for Animals” and you can find it an Amazon, B&N and most major book sellers.

15. My favorite music is, and always will be classical music. I play the violin, and not as well, the piano.

16. Every time I go outside at night and look up into the sky, I am struck with wonder and stand there, still as a statue for at least 5 minutes.

17. I have a birthmark on my stomach which exactly matches the star pattern of the Pleiades star cluster. I first noticed this when I was a little girl.

18. While I hate being uncomfortable, I wish I could dress every day like I lived at a Renaissance Fair. This would probably only last 15 minutes after putting on such a dress.

19. I plan to own a flock of Silkie chickens in the very near future.

20. I am very passionate about many things in the political arena, but I seldom discuss or share things like this on my Facebook page because when I do, I get the definite idea that I am pissing people off. And that makes me insanely uncomfortable.

21. This was very difficult list for me to write.

Back from hiatus… aka strange dreams on the morning of my 44th birthday

Today, I will be a year older at 10:46 AM. I will be happy to spend the next year with an even-numbered age. I like the number 4. This year, I can enjoy two of them. Unfortunately, no cake for me this year. My Doctor has me on a very restricted diet, and no sugar of any type is allowed for at least 6 more weeks. I dream of cake. And, as you’ll soon find out, cows.

I’m officially breaking my blogging hiatus today! The summer was incredibly busy, leaving me with no spoons with which to blog. I recently finished a major, major project- something which I’ve been trying to do for over ten years, actually- move my website to a new store platform. Well, I did it- and everyone seems to like it, and it’s working great so far. (LINK if you’re curious). We started our 2nd year of homeschooling on August 14th, and all is going very well so far.

At this point, I’d like to share with you my odd, but very wonderful dream from this morning:

First, you need to see this painting to understand the basis of the dream. It is called “Europa and the Bull”, by Coypel. It depicts the myth of Europa being taken by Zeus in the form of a bull. I’ve been very interested in Greek mythology lately, and my Son has been for several years.

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Second, let me introduce you to Maira. She’s a lovely cow who lives in the pasture along the side of the house we’re renting. There’s about 30 cows in there right now, of which that number includes 15 calves. I adore watching the cows. This week I achieved greatness when I finally convinced one of the cows to eat cracked corn out of my hand. It took six months, but I finally did it! The next day, three of them ate from my hand. And the day after that, at least 10-12 of them. It’s been a stellar week, basically.

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Now, my dream! Got an interpretation of this dream for me? Leave me a comment!

My mind fabricated it’s own version of the painting, “Europa and the Bull” by Coypel- in the cow pasture behind my house, though. In my dream, I went over to the fence with a bucket of corn, and all of the cows galloped up to get some. While I was feeding them, a group of people came out of the back entrance of my neighbor’s house. In my dream, I identified them as the farmer and his family (i.e. owners of the cows and the land). We exchanged pleasantries, and they said they heard that the cows loved me. The farmer’s son asked me which cow was my favorite. I pointed to Maira, who is the only cow in the field who has horns (some breeds of female cows have horns).

He suddenly had Maira saddled up with a blanket and a leather cinch and was leading her with a bridle. He told me to get up. So I did, and then he was leading Maira into the cow pasture, which suddenly had transformed into the visual equivalent of this painting- with beautiful blue water, flowers growing everywhere, cherubs, butterflies, etc… it was the most beautiful thing I’d ever seen. A lot of the visuals in my dream also looked a lot like some of the scenes in “What Dreams May Come”, which I recently re-watched after Robin William’s passing.

Once we set foot on the other side of the fence, we were both wearing flowing robes, and were all blowy, iridescent, and shimmering. Our hair was long and wavy, sparkling in the sunlight- which was the most soothing warm gold tone, like a perpetual sunset. We went all around the pasture (which was really no longer the pasture), and it was this amazing, spiritual experience.

But at one point, I remembered that my Son was standing back at the fence waiting for me, so I knew I had to go back. When I returned, he was sitting in the grass on the other side of the fence, kicking his feet in a pool of water. As I got off Maira and went through the fence, the entire pasture suddenly became a clear, still lake with moonlight reflecting on it, and I was back in my normal clothes, no longer supernaturally glowing. The lake was very deep, but crystal clear, and the cows were all at the bottom- alive and well.

And that, my friends- is my bizarre Greek-myth inspired birthday cow dream.

I will leave you with some of my favorite moo pictures. Every day I go out to visit the cows. It’s relaxing. I love seeing all of the new babies (two more were born the day before yesterday!). There’s two donkeys in the field too, to protect  them from coyotes.

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A brief hiatus…

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I’m needing to take a break from blogging and activism for the rest of the summer. 

Certain priorities have to come first. Parenting, making a living, maintaining the house, expenses, preparing for the upcoming homeschool year. I wish I could handle all of these things AND regularly blog, but I can’t. I’ve been trying to, and it’s been taking it’s toll on me. Autism Activism is very emotional for me, and can exhaust my resources, leading to meltdowns. I need to learn to pace myself, and understand that I can’t participate in every single event that happens. It’s been draining my resources, which are limited. Even worse, is that I feel a great deal of guilt because I haven’t been able to regularly blog, or participate in flashblogs and activism. I’ve been trying to be kind to myself about this, because my situation is unique- everyone’s is. For some, activism and blogging is their main activity. I wish it could be mine, but that’s probably an alternate universe. I can’t compare myself to an activist who is married with a supportive spouse, or one who doesn’t have to work, or one who has children in public school with supports and accommodations. I don’t have any of that. Rather than beat up on myself every day for not being able to participate, I’ve decided to take a break, set some limits for myself, and return in September with a fresh and renewed sense of adventure.

Summer isn’t my favorite time of year. Living in South Carolina, the heat and humidity can become stifling in July and August, which results in more time spent indoors. I’ve always been more active in Autumn and Spring, and even hike all through the Winter. Even though my Son is homeschooled, we follow the regular school calendar in order to meet our 180 day education requirement. So he’s out for the Summer. A lot of parents who homeschool might find their schedule becomes easier, but for us- it is actually much more complicated and time consuming when he isn’t spending 4-5 hours a day working through his curriculum, online exercises, reading and projects. School provides daily structure and routine that he’s gotten used to, and it’s been rather chaotic for him without it. I can sense his anxiety! He has a lot of distinct interests and projects going on right now, and those have been ones that are time-consuming and require supervision, such as cooking, baking, and working with tools in the creating of his Viking shield.

So, that’s where my Summer has gone. I’m also working on implementing a brand new website design and platform for Aromaleigh Mineral Cosmetics (my small business that I started over 15 years ago, which thankfully supports us!), and my yearly huge project of getting all of my finances entered, categorized and prepared for the September and October deadlines of my income tax extension.

I LOVE TO WRITE, SO I WILL BE BACK WRITING REGULARLY, AS SOON AS I CAN!

In the meantime, please let me know if there’s anything specific that you’d like me to write about. I think that hearing some suggestions will get me inspired!

The T21 Blog Hop – June 2014

This is my first time doing a blog hop, so forgive any error in advance. 

And Happy Solstice to all…

The link of blogs in the hop doesn’t seem to want to show up when I preview this- so click the link at the very last sentence of this post, and it will take you to a page where you can see them.

Add your post(s) to the linky below by clicking the link and following the instructions. If you need further instruction for adding a reciprocal link to your blog post, follow this link.

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Click here to enter your link and view this Linky Tools list…

Why I will never be an Autistic “Warrior Mom”

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Image description: Rainbow diagonal stripes with white text that reads: “Remember: The way you treat Autistic adults now is how you are telling the world to treat your own Autistic children.” Red colored heart at center bottom of image. SOURCE

 

My Son just turned twelve, and is currently going through the diagnostic process for Autism/ADHD and Sensory Processing Disorder. We’ve just started this journey. Having a light shining onto his differences has made me appreciate how unique he is even more. I’m not a “warrior mom”. I don’t want to “kick autism’s ass”. Autism is not a disease. It’s not something that I can remove from my Son like some sort of hackneyed exorcism. I am tired of the pathologization of Autism.

I don’t want to change him, fix him, or force him to be “normal”, and I refuse to teach him that he has to do this in order to be successful or accepted. I am proud to be autistic, and I feel blessed that this same neurology which has caused me so much strife can now be used towards raising my Son to be his own individual, expressive, neurodivergent self. But I’m also a bit worried, and I’m not alone. My Son is worried as well. He’s recently begun following the Autism community, and is alarmed at what he’s read about Autism Speaks. The other day he said to me, “So… Autism Speaks thinks Autism is bad, and that it shouldn’t exist. They think Autism is like a demon. They think you’re bad. They would think I’m bad. They would wish people like us were never born. They are evil.” ( I believe that Connor read about or watched Autism Speaks controversial commercial) “I am Autism…I work faster than pediatric AIDS, cancer and diabetes combined…you have no cure for me…I will plot to rob you of your children and dreams. The truth is, I am still winning and you are scared.” 

You’re probably wondering how my Son, being both Caucasian and Male, somehow escaped diagnosis at a young age. After all, the most highly diagnosed group is in fact caucasian males. I briefly questioned this myself, but it’s more complex than any one thing. It’s a combination of factors. Everything from my being autistic to lack of familial support to my being a single Mother and his behavior seen as an extension of the stigma that society and my family has attached to this for us. If you think that there’s little stigma for single Mothers these days, you’re quite wrong. It’s alive and well, and I am constantly discriminated against, unfairly judged, and treated in a way that is much, much less than the “complete” family units I’ve observed alongside me over the years. I’ve been an outspoken troublemaker of sorts, in the eyes of my Son’s different schools- since as long as I can remember. Most likely seen as an enigma, an unusual woman with poor social skills, who found it difficult to convey her points within the framework of parent-teacher conferences, and the frequent parent-principal meetings that occurred.

My Son has spent the vast majority of his time with me- an autistic person. Of course I didn’t see him as being “abnormal” or as needing diagnosis. I saw him as being similar to me. I didn’t think it was strange when he had severe meltdowns in crowded public spaces, as I was on the verge of having one as well. I didn’t think it was unusual that he was so reactive to lights, sounds and smells. So was I. I didn’t think it was odd that he needed a lot of decompression, nap, or alone time. So did I. I didn’t realize he had delayed speech and that no one could understand him. I could understand him perfectly fine.

We have always lacked familial support. My family has spent scant amounts of time with my Son. Very scant. Pathetically scant- but the whole while defending their behavior as if I was the one who was wrong for expecting more. My Mother’s idea of spending time with him was giving him a bowl of crackers and sitting him in front of a movie while she pranced off to check her online dating profile and sell things on Ebay. My Son didn’t have a doting Grandmother, who loved spending time with him and would have noticed (or in this case, actually cared)… but I also think it’s possible that my Mother did notice, and simply chose to not say anything. It’s no secret that she sees me as a broken, defective human being, and outright treated me as such. Do I believe that she also saw my Son this way? Definitely. My Mother spent an inordinate amount of time with my Brother’s four children- yet she treated me and mine like we were factory rejects. You can’t quantify that. It’s just too obvious.

The school system has repeatedly failed my Son. It got to be so traumatic and counter-productive for him, that I removed him from the school system and started homeschooling him. This has been a positive experience for him on so many levels. He has learned more, grown more, and become more happy and confident. There is no gender bias in our classroom, so he no longer feels awful for the crime of having been born male (this was so common in his public school classrooms, as was severe female bullying). He no longer has an abusive teacher punishing him for stimming, by removing him from the other students and segregating him to the back of the room, near the noisy hallway. He’s no longer being bullied for not being athletic, or interested in the same mainstream trends as other students. He’s no longer being made painfully aware that he’s different- in the homogenized environment of the public school, where compliance and a herd mentality are prized. He is being treated like an individual, and allowed to learn, progress, and grow- like an individual. His neurology is seen as a gift, not a curse. 

I have a very hard time relating to parents of Autistic children who want their children to excel in neurotypical ways. You know, for them to be “normal”. I am aware that a great deal of my resistance to this concept is because of my childhood. My Mother wanted me to be “normal”. She wanted me to be like other girls. She frequently cited examples of specific other girls she wished I was like, and ironically, they were often girls who made fun of me and bullied me. I have always maintained the belief that it is perfectly acceptable for my Son to not be like other children. That it’s important for me to honor, respect, and accept who he wants to be. Because I was not respected, or accepted by my own Mother. To her, I am and always will be- a broken disappointment. This hurts, and makes me angry. Nothing will ever change my Mother and how she feels about me. It is her loss, but ultimately my gain- because her toxic cycle will never be repeated and passed on to my child. He is free.

He is free, and so am I. I will not put my energies into waging a war against Autism, or being a warrior Mother, fighting the school system. No, I will put my energies into helping him to learn and grow. I will put them into setting a positive example for him as an Autistic adult. I will put them into helping him to learn how he can be kind and supportive to his neurology. I will put them into teaching him to always respect and nurture himself. I choose to direct these energies back into our family unit and invest them wisely, in order to create a better future.

 

So, are you wondering, “If not Autism Speaks, then WHO?” Well, I am so glad you asked. Please consider these resources, first and foremost:

Parenting Autistic Children with Love and Acceptance: https://www.facebook.com/ParentingAutisticChildrenWithLoveAcceptance

Autistic Self Advocacy Network: http://autisticadvocacy.org/

We are Like Your Child: http://wearelikeyourchild.blogspot.com/

Thinking Person’s Guide to Autism: http://www.thinkingautismguide.com/

The Golden Hat Foundation: http://www.goldenhatfoundation.org/

Autism Women’s Network: http://autismwomensnetwork.com/

“Mom, it feels like we are the last two people on earth.”

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I’m in the process of working on a post about my Son’s diagnosis journey, but for now, I will share with you these pictures of our recent Stand Up Paddleboard excursion! Organized sports are not something that has worked out for my Son. And we’ve tried several, that’s for sure. Most of the time, he admitted to me that he only wanted to try a certain sport so that other kids would like him, or his Dad would like him, or he would make a friend. It breaks my heart to write that.

Nevertheless, it’s important for a boy of his age and neurology to have some healthy physical outlets. I’ve found these for him in archery, hiking and SUP. SUP stands for “stand up paddle board”. We took a few lessons last year, and really fell in love with the sport. It builds strength, balance and a whole lot of confidence. It’s relaxing, and when the weather gets too hot, humid and buggy to hike in the woods, SUP is like hiking on the water.

While other boys are playing group sports, loudly yelling and kicking around balls, my Son quietly sits, dreaming of being one with the water or the trees, away from loud voices, loud thoughts, and loud demands. SUP is something that he craves. He asks to go to the lake almost every day. He longs for the solitude. He said to me, on the day I took these photos:

“Mom, it feels like we are the last two people on earth… and I think that I’m OK with that. I just like being out here and away from everyone and everything.”

We live in the most Northwest corner of South Carolina, where the Appalachian mountains swing into the state and then continue onward into North Carolina. This area is blessed with an abundance of water. We’re surrounded by it, on all sides. “Oconee” is the name of the county we live in, and the name means “land beside the water” in Cherokee. This particular SUP trip is at Lake Jocassee, a manmade reservoir which is also generates hydroelectric power. It’s a huge lake, the biggest we have SUP’d on so far. While I grew up in the mountainous lake region of Northeast Pennsylvania, this area has a distinctly magical quality, and looks like another country altogether. At times I felt like I could have been on a Scottish loch. We like to start as early as possible in the morning, because nothing comes close to the lifting of dawn from the waters. It’s a delicate time of day, when we both feel most in tune with our world.

We paddled about 12 miles, for a total of 8 hours on the water. This was not planned to be so long, but I did not know about the Southeasterly headwind that whips up on the lake around Noon each day. We struggled to get back. At times, I wished that a boat would come close to us so that I could beg them for a ride back to the boat launch. That didn’t happen, so we had to find the strength to make it on our own. We’re both still recovering from the trip, with sore muscles and blisters on our hands. Lesson learned! Other than that, it was a serene and most beautiful day. We will go again, soon. Maybe tomorrow?

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Sometimes it’s important to take a break… [Neuro-friendly Life- Day 10]

It’s been only eight days since my last post here, but it feels like months. I feel guilty about it, too. I have many wonderful friends in the online community and I see a constant stream of tweets, posts, activism, writing, sharing, and discussion coming from them. And I feel very badly that I just can’t do it all the time. I just can’t.

Don’t get me wrong, it’s not for a lack of wanting! It’s simply that there isn’t enough spoons in my day to handle what I’m working through right now, in the present. Spoons? Why on earth are you talking about spoons. Saying “I don’t have the spoons” is just another way of saying “I don’t have the resources available to me at this time”. Whether the resources are energy, brain power, or any other intangible or tangible thing needed to accomplish any certain set of goals within a certain day.

My problem is that I do too much. I exhaust myself, because I have to do what I have to do. It’s just how my life is. I’m a single Mother, and that ain’t changing any time soon, nor do I have any interest in changing it. I homeschool my Son because the public school system has failed him, and I am determined to be an advocate for him and do what is right. I don’t have parents to fall back on. I don’t have a local social support system, except for one aspect of my work. Each and every day takes a lot of energy, and I have to choose between putting my spoons in the most needed and necessary place. I’m not complaining. This is just how my life is. It’s always been like this, so I’m not pining for a life long lost. I’ve always lived life in a tumultuous and stressful fashion, much to my Mother’s distress. “Why do you always have to make things so difficult?” “Why do you attract negative people or things into your life?” “Why isn’t life easier for you?” I can’t answer that. I gave up trying to figure that out a long time ago, because it doesn’t help to sit on my laurels and expect the universe to drop an answer into my lap.

A lifetime of never having enough spoons, combined with severe anxiety has depleted my body in ways that have begun to show themselves in obvious ways, in the last few years. I can’t imagine that a lifetime of stress, constant anxiety, on and off depression and being substantially medicated with psychotropic medications can have a positive effect on the body. I fight daily with chronic pain. I don’t usually blog about it, because it only makes me more aware that it is there. But it’s a constant, underlying thing. Dull and buzzing in the background, like a live wire. The chronic pain has resulted in another layer of anxiety upon another. A lot of energy is put towards trying to mentally dull the pain in my body. I’ve done a lot of meditation work, energy work, and yoga nidra meditation to help deal with chronic pain.

In my 43 years, I’ve depleted my body. I have adrenal insufficiency, which manifests itself in chronic pain and fibromyalgia-like symptoms. When I say I don’t have the “spoons” it’s not just that I don’t have the desire, but that my body actually is not producing the necessary endocrine hormones I need to adequately function. My body doesn’t have the fuel. It doesn’t help that my endocrine disruption has resulted in rapid and massive weight gain over the last two years. I’ve gained FIFTY pounds, on top of what was a very healthy and normal average weight for a woman of my height. This makes me hurt more. It makes me feel slow, old, and creaky. Any person might look at me and assume I don’t take care of myself and that I subsist on soda, burgers and fries. But the truth is, that I eat an extremely strict diet. I was vegan for a year. I now eat a gluten free, dairy free, egg free, as organic as possible, “anti-inflammatory” diet as prescribed by my Doctor for tested food sensitivities. I eat barely any sugar, other than what is in the coconut creamer in my decaf coffee every morning. Any “normal” person would be ripped, fit and in the shape of their life with the regimen I follow. But me? I’m the heaviest I’ve ever been in my entire life. I can’t do ballet anymore. I can’t do yoga anymore. I can’t go on long hikes anymore. But, I garden. I work on my feet most of the day. I clean my own house. I hike when I can. I paddle board. I do Wii fit with my Son. I am a pretty active person, and I do it while being in physical pain. I don’t want my Son to know how much my body hurts. I don’t want him to worry about me. I want him to enjoy his days.

All of this takes spoons. More spoons than I have.

I’ve noticed that I am not alone in having chronic pain, fibromyalgia or adrenal issues. I’ve read about similar experiences from numerous other Autistic women. I am honestly starting to wonder if there is a correlation between Autism and endocrine deficiencies. If you are Autistic and have been diagnosed with fibromyalgia, chronic fatigue syndrome, hypothyroidism, adrenal insufficiency or premature menopause, please comment on this post! I am really interested in hearing your experience, age, onset, whether or not you were diagnosed early in life, etc. I was diagnosed at 41, so I’ve lived most of my life in pretty extreme levels of anxiety and stresses.

Solutions? How to get more spoons? Honestly, the only way to get more spoons in your day is to get more supports. And this does not come easy, especially when you have an invisible disability. It also doesn’t come easy when you’re like me, and you seem to invite the suspicion of other people much more easily than their sense of caring. What I mean by this is that I am an enigma to most people. I am a single Mother. I live with my Son and two dogs. I work at home. I homeschool my Son. I rent a house. I don’t have people or family regularly coming to that house. I am very quiet and keep to myself. Rather than make sincere attempts to get to know me, people like to gossip and fabricate all sorts of inane and ridiculous theories about my existence. Through the rumor mills of past neighborhoods, I have heard things like, “I heard that she gets tons of alimony every month and doesn’t work”, “She ships out small packages every day, I heard she runs a pornography website”, ” Her parents must be very rich and support her, because she doesn’t go to work every day”, “I think she might be a high-end prostitute, because she doesn’t work, and is home all day long. She must leave the house at night to work”. YES, ALL OF THIS STUPIDITY!

I’m not making this up, people have made up these ridiculous stories about me in the past. All because they couldn’t figure me out. And yet, they never tried to get to know me, or talk to me. They just assumed. If they had talked to me, they would have found that I work at home. That I work very, very hard. That no one supports me. That my parents give me no money, no man gives me money, the state doesn’t give me money. I have not won the lottery. There is no secret. I am a simple, introverted, hard-working person who is deeply sensitive, passionate about being a good Mother and a good citizen of this earth, and I like knowledge. Lots of knowledge. And I detest ignorance.

I would love to have more supports, even just very simple and basic ones. I think every Autistic mother would, whether it was a delivery of some needed groceries, help with cleaning or cooking, or if children are younger, help with child care. Even just a small amount of assistance can make a huge difference.

As I write this, I’m eagerly awaiting for the mail to arrive. About two weeks ago, my Son was referred to the behavioral pediatrics unit in Greenville, for formal Autism spectrum diagnosis. I blogged about it a few posts back. I filled out a pile of papers, and sent them in, and am now waiting to hear back from them about an intake appointment. It could take months for them to be able to see him. I already know what his diagnosis will be. Most likely PDD-NOS with sensory integration issues. I know this because my Son is exactly like me in his neurology. The waiting process is difficult. I am eager for this journey to commence. In part, because I am curious if it will open up the opportunity for my Son to have some social or educational supports, opportunities, or activities that are otherwise unavailable to him now. I began homeschooling him last year, after several years of constant warring with the public education system. It’s been what is best for him, as he has blossomed, and become a student of the world. He was experiencing substantial depressive episodes while in the public school system. These have been alleviated. He often says he feels good, or feels confident. He sometimes describes emotions that are new to him, which he has no words for. He describes how they feel inside his body, and I understand him.

So that’s where all my spoons go. Every morning, I have to prioritize. The most important things get the spoons. Everything else has to wait, and be accomplished in due time. Work, in the form of creating financial support, takes a lot of spoons. I am very blessed in that I love what I do, and I enjoy the creativity and feel energized by it. However, on a daily basis, my work is also extremely stressful for me. There is little to nothing I can do to change or alleviate this, which means that I have to change. Some days, work will require more resources, leaving me no spoons with which to write or engage in activism. Other times, my work levels will wane and I will have some free thoughts to put to words. Like right now.

Through it all, I feel guilt. Nonstop guilt. Always feeling like I am not doing enough. I realize that if my situation were different, I most certainly would be able to do more… but it is what it is, and I have to make the most of it with the spoons that I have. And most importantly, my health is of paramount concern. I’m fortunate in that I have been able to begin towards healing, or at least halting the further degradation of my health. But it’s a daily struggle, to maintain a certain level of health. You don’t realize how important health is until you start to lose it. And in my life, it’s the most important thing I’ve got. I need to maintain good health and prevent illness, so that I can be here with as many spoons as possible, for my Son. He needs me. He relies on me. He is still very young, and will be needing me for love, support and guidance, long into the future.

This is what makes me tick. This is why spoons are important. Allocation of resources. It’s a crucial aspect of the successful implementation of just about any plan in life. Knowing your limits is one of the most difficult, but important lessons I’ve been trying to teach myself. I remind myself daily that nature herself works slowly and carefully, but always seems to get the job done. Nature works with a set amount of spoons, carefully allocated, and persistently succeeds at her task. As I watch the tomatoes in my garden slowly grow and ripen, I remind myself that it’s alright to take a break, to go slowly, to even stand off to the side and watch once in a while. You simply have to take a break every once in a while. So go ahead, do it.