I think the main entity that causes anxiety in life are expectations. The anticipation at the results of an event or the sudden change in plans drives my anxiety through the roof. It also happens with good things! The planning and excitement leading up to events leaves me exhausted. The exhaustion isn’t always bad, and I’ve even learned to welcome it, give it a warm hello when it knocks on my door, and offer it a room to have a nice, comfortable stay until it’s visit is over.
Expectations require a little more planning on my part. Scratch that, they require a lot of planning. I’ve learned it’s important to have a Plan A, Plan B, and even accept that there is no plan at all.
Alongside my parents, I was also raised by my grandparents who I loving refer to as Granna and Poppy. G&P adopted my Aunt Martha who has several mental and physical handicaps, all of which don’t keep her from smiling the biggest smile you ever witnessed and demanding hugs at every turn. Martha taught me the importance of ability in disability. Granna taught Martha she could pretty much do anything she wanted, if she put her mind to it, and tweaked a few things. Aunt Martha lives an independent life in a group home with other ladies, she has a job, and she even has a boyfriend!
I feel that when the media includes autism in its programs, it only illustrates one side of the spectrum, and it is usually the side I don’t entirely relate to. There is an entire other half of the spectrum that Hollywood doesn’t explore near enough, and when they do touch on it, it usually showcases the “classic,” male-sided idea of autism. The truth is that people on the spectrum, and all differently abled people can live healthy, productive lives and be part of society.
With all of this in mind, I know how important differently abled people are to the community. I know they can live successful lives, I know they can over reach impossible standards placed before them. Even with this knowledge and witnessing it first hand, I’m ashamed to say that upon receiving my Autism Spectrum Disorder diagnosis…I was embarrassed. I didn’t want to be put in the same category as these types of people, handicapped people. Then I felt ashamed of myself for having these thoughts and feelings. I was raised to include everyone, different or not; to embrace them as equals. So, why did I have these thoughts and feelings? One answer…expectations.
Expectations followed me into my marriage. You know the saying, “first comes love, then comes marriage, then comes a baby in a baby carriage”? Hello, expectations. I was determined to get pregnant right after I got married, in 2014. I just assumed my Momma’s prayers reached God’s ears with more force than mine because my husband and I were stupid-broke newlyweds who could barely afford to live ourselves much less care for a kid, and that’s why there was no success in conceiving.
Earlier this year, after much discussion and prayer, we decided to contact my OBGYN and get the process started, for real. My expectations were that the doctor would figure out what was wrong, she would give me some medicine, we would do The Dance, and we would get the results we wanted. HAHAHAHA!!! Yeah, it doesn’t happen that way.
One morning I decided to take my one millionth pregnancy test of the week. Guess what?! It came back positive! I showed a few friends who confirmed that their eyes saw a positive, I showed my husband, I texted my sister, then I called the doctor. As I waited for the doctor to call me back to confirm my blood pregnancy test, I calculated that my due date would be December 24. Christmas had been such a bad time of year for my family since my Mammaw, Nana, and Granna had passed away a few years earlier on or around Christmas. I began to refer to the holiday as Doomsday. I was so ecstatic that I would get to give my husband and the rest of my family the best Christmas gift ever and make the holiday season happy again, and associate it with LIFE. I even tried to convince Christopher that if the baby was born on Christmas Eve or Christmas Day we would name her/him Noel.
Then I received The Call. Along with autism, I also battle with Polycystic ovarian syndrome. It’s pretty common for people with PCOS to receive a false positive, or a chemical pregnancy, due to imbalanced hormones, and that is what happened in my situation.
Expectations out the window, I was crushed. I was bombarded with anger, shame, guilt, jealousy, just to name a few. I had “all the feels,” if you will. Those feelings are overwhelming to anyone, especially to an autistic.
Here I was, struggling with both my mind and my body not working “correctly.” It was embarrassing. I questioned my self-worth. Why was I on this earth if I was going to be “retarded” and barren? I questioned my worthiness of motherhood, if I would even make an “acceptable” mother since I had autism. Surely God thought the same thing and that’s why he didn’t send me a baby.
The truth is there are plenty of women on the spectrum that have successful careers. There are many women on the spectrum that live an ordinary, everyday life and blend into the crowd. There are many women who live amazingly funky lifestyles and are noticed for their talents. There are plenty of women on the spectrum who reach motherhood and excel. There are also many women on the spectrum that let life take them on a journey and learn to embrace their travels, heartaches, and joys.
My goal is to open the door to that discussion, to break down the walls and barriers that are autism. It all starts when we begin to open our mind to the great and numerous possibilities. It starts when us aspies begin to believe in ourselves. Most importantly, it starts when we change our expectations.
Whenever I divulge my diagnosis to someone, it is usually replied with a puzzled look and the person exclaiming, “really?!?!” At first I was annoyed by it and a little offended, but now I laugh. I laugh because I feel free and I feel like my freedom is used to educate others. I’ve also educated myself on autism. It has helped me become self-aware.
No one has asked me what it is like being on the spectrum. I don’t mind the question and I’m not sure why no one has asked me. Maybe because I talk about it all the time that I already answer the questions. So, I have asked myself “Self, what is it like being on the spectrum, now that you know that is what it is?”
For me, being on the spectrum is like being on a computer. I look nice, and presentable, just like any other computer. No one knows I’m any different. It isn’t until you start interacting with me that you notice I’m a bit slower than the other computers. All the other computers can handle several tasks at a fast pace, without freezing. My program takes a while to load, can only handle one task at a time, and if you attempt to make me multitask, I will freeze up, shut down, and will need to be restarted.
I have a few tips on how to avoid a meltdown that work for me. But I am also learning what exactly triggers me and sometimes meltdowns can’t be avoided. So, I will also give you some tips on what helps me calm down from a meltdown.
I should probably explain what a meltdown looks like for me. Just like autism itself, my meltdowns just have a spectrum. Sometimes they are subtle and sometimes they are extreme. Usually in a subtle meltdown, I’m aware that I’m in a meltdown and can talk through it. When it is subtle, I just look like I’m in a bad mood. If needed, I can fake a smile but it looks forced. Body language will be off. If it’s too loud, I may cover my ears. A medium meltdown usually has some tears and snot. I’m not a pretty crier so it’s always snotty tears and loud sobs. Often times there will be yelling as well. A major/extreme meltdown, luckily, doesn’t happen often for me. I don’t really want to explain it because it’s embarrassing but I’m trying to be honest with this blog. An extreme meltdown will have screaming, crying, rocking back and forth, and sometimes I end up under the bed or in a closet or something. Let’s not dwell on the bad times!
Okay, so, to avoid a meltdown, I have a few items on hand.
1. Ear plugs.
Life on the spectrum is LOUD. I have songs, conversations, and a plethora of other things going on in my head. So, my head is already loud enough as it is. I haven’t figured out why, but I’m also more sensitive to sounds. So environmental sounds are louder to me than they are to you. For instance, when I am at the grocery store, the radio is loud and it feels like it’s screaming in my ear, I can hear every single cash register beeping even if I’m across the store, the employees have radios on and talk to each other, people are being paged over the intercom, there’s a screaming child the next aisle over…….you get the picture. I get physically exhausted by the time it is over. With ear plugs, I still hear everything but it is so much more quitter and I can pay attention to my shopping list.
2. Fidget Tangle
This toy is way more subtle than those fidget spinners. I use this tool mostly when I’m at church. Sacrament meeting is a quiet and gentle service and sometimes my mind wanders. I have a hard time keeping still and this tool allows me to get my wiggles out without being a distraction. It also helps me think more clearly and stay focused.
You can find a fidget tangle here-
My mind is always filled with thoughts and songs and conversations that I need to “walk it out.” Whenever I get information overload or am in a loud environment, I have to walk around. It helps clear my mind.
4. Say Something
Even if it’s just as simple as “I’m stressed out” no one will know that I need help unless I say something. Sometimes it’s easier to say something to someone I really trust, such as my husband. The reason being because I feel embarrassed by how little of a situation can make such a big complication for me.
5. Reusable grocery bags.
Yes, this silly thing has helped me avoid a meltdown. I cannot stand clutter. I will easily get stressed out, and feel guilty, after grocery shopping if I come home with a million plastic sacks or paper bags. Reusable bags don’t make that crunchy sound, and they are pretty stiff so I can look directly into the bag. Believe me, this subtle change in my life has become a tremendous miracle.
I’m still working on my list, it’s every changing and ever growing. Some things need to be tweaked. Also, it’s important to note that no matter what tools you have on hand, sometimes the situation placed before you is a bigger issue than any reusable grocery bag can handle! Sometimes I have to face those meltdowns.
Right now I have found that routine is best when it comes to settling down.
1. I notice that the one thing that overwhelms me is clothing, accessories, and hair. I need to change into comfy clothes, take my jewelry out, and put my hair down or at least out of my face.
2. If I have time to shower or take a bath, I will do that. A lot of autistics say the water physically hurts them and they can’t stand to take a bath or shower. That idea is totally foreign to me and I have an opposite experience. Water always takes the pain away, helps me focus, and is just nice.
3. Next, I go into a cool, dark room. If I’m at home I lay in bed. I also make sure to have some DoTerra Lavender Essential Oil in my diffuser. This stuff is amazing for a meltdown. I do straight lavender. I’ve noticed that using blends, such as Serenity, are too much of a sensory overload for me; I need to use just one, simple scent.
4. I love to utilize my library’s OverDrive app where I can either listen to audiobooks or read eBooks. Usually I listen to an audiobook when it comes to winding down. I also listen to something simple. Right now my go-to is anything by Janette Oke. Her books are conservative and a little cheesy but I find that simple and conservative help me when I’m dealing with a complicated issue.
5. I know that medication can be a good thing, and I am on it myself, but sometimes I like to go a more natural route sometimes. If I need a little more help to settle down, I use Calm. It is a magnesium supplement drink. It comes in different flavors or you can purchase it unflavored. My mom and I found a variety package at our local health food store so we could try all of the flavors offered. The flavor I like best is Raspberry-Lemon. It almost tastes like Crystal Lite. This drink settles me down and also makes me a bit sleepy.
6. Lastly, it’s important for me to get a lot of rest in recovering from a meltdown. I try to listen to my own body to determine how much rest I need. Sometimes it’s minutes, hours, or days. It can be super annoying, especially if I have things scheduled to do. But I know it is important to listen to my body and what it needs.
Before I was diagnosed I found that I was extremely embarrassed and ashamed of myself because I became overwhelmed easily and would shut down from the outside world. In the past, I shut out a whole sorority of girls when I was in college because I didn’t know how to handle the social aspect of being part of a sorority and the general drama of being around a huge bunch of girls. I wish I would have known then what I knew now about myself and I wouldn’t have closed off some good friendships I had going for me. However, I now know which signs to look for, and I mostly know how to handle myself before I go into meltdown mode. Looking back, I wish I could fix mistakes I made, and in true aspie fashion my mistakes give me anxiety today. But, I now know myself, I laugh at myself, I learn from myself, and I try to move onto a bigger, better, brighter future.
Since being diagnosed with autism, I have learned to experience my emotions instead of pushing them away like I used to do. I used to get really upset and I didn’t know why because I didn’t let myself feel my feelings. I’ve now allowed myself to feel my feelings and explore it in order to understand myself better. My mom teaches first grade and told me that when her kids coke to her with a problem, she asks them if it’s a small, medium, or large-sized problem. This method allows them to really think and consider their situation, practice mindfulness, and gives them an opportunity to consider how best to express their problem to their teacher. I think. So, I’m using that method here. At this very moment. Aren’t you lucky to be reading about it? I’m writing this with a medium-sized emotion that I will try my best to explain. The emotion is a little bit of sadness, happiness, and gratefulness. I also feel bittersweet.
Autism can have its moments of isolation. Especially if you’re a woman with autism. Most of the books in the library are focused on helping your CHILD with autism. Or, the stupid one I saw was “the autism cure.” Gag me. (I pictured myself in an 80’s updo saying that phrase.) Online sources on adult autism usually point toward autistic traits in men. I tried listening to an audio book written by Temple Grandin. She is amazing, really. But she is also on another side of the spectrum that I cannot relate to and I feel that a lot of her research is a little outdated. (Although that’s not totally fair of me to say because I didn’t read the whole book, but she is also a bit older than I am.)
However, tonight I found someone I totally relate to! Her name is Katy and she is also on the autism spectrum. Everything she said, I totally related to. Her video can be viewed at this link.
In my last blog post I stated my Aunt Jeanye had created a beautiful piece of artwork for me. Well, I don’t know if it was made for me specifically, but I ended up with it. So, I’m just going to assume it was specifically for me. Anyway… What makes it special to me is not only the words on it, but that I received the original piece. It has texture and I can touch the lace and the glue and paint. It’s a real experience, that silly little canvas. It brings me much joy.
The words on the canvas state “love your you” which I think is the best motto that can be given to any girl, but especially one on the spectrum. A lot of girls on the spectrum spend their entire life trying to conform to the standards society expects of us. It is a really special and wonderful sensation when we are given an “olive branch” that speaks the words “I love you, and I accept you. All of your weird, unique quirks. You are loved because you are you.”
It’s feels freeing, like I can fly in the wind. Just like a butterfly, showing off my beautiful wings.
Focusing on happiness and where to find it has brought me to a weird revelation. I thought that I would have to find it somewhere. I checked out books at the library. I considered trying to find a new meditation method. I was really lost on where to find this happiness I was searching for in order to come up with a new, cleaver blog post. This weekend our church held a conference for the churches in our area, called a Stake Conference. My husband and I attended a talk focused toward Native American’s. The talk about given by a member of the Seventy (really important church guy) named Eldee Echo Hawk, a Pawnee tribal member. My husband is a member of the Choctaw Nation of Oklahoma and so I try to pay special attention to NA (Native American) facts for our future children if/when they show up so I can later educate them. Anyway, Elder Echo Hawk spoke of a General Conference (a conference for the entire church given twice a year) talk given by Elder Wildord W. Anderson of the seventy titled The Music of the Gospel.
There’s a really neat video you might enjoy inspired by the talk.
Basically, the talk is about listening for the music of the gospel, which is to say listening for the Holy Ghost. And once you hear the music, you follow with the dance steps which is the instructions given by the Holy Ghost. By listening for the music and participating in the dance, Elder Anderson assures us that we will find true joy and happiness.
I had to laugh at myself. Of course happiness would be right under my nose! I was looking everywhere else and in all of the weird places for it when I had already been surrounded by it.
I don’t know if it’s because of my autism, but whenever I get really upset about something, I lose focus. Autism has its ups but the downs can be losing focus. I get into a funk sometimes and it causes me to lose focus of my testimony of the Gospel.
So, what I’m trying to say is that I have to go back to my roots in order to find my happiness. I was recently given a gift by my wonderful and artistic aunt. It was an art piece that had the quote “love your you” on it. That reminded me to go back to my roots. What do I love? I love animals, family, church, friends, and so many things. I need to focus on what I already know. Keeping my focus on the things I know will surely reveal the path I am supposed to take in life.
In case you haven’t noticed, I have a habit on hanging onto negative feelings. I thought that if I talked about my hard feelings and letting people know what I was going through, I would feel better. Sometimes it helped but mostly it just made me feel worse.
For the month of June I’ve decided to focus on HAPPY. I’ve concluded that happiness can come from changing your perspective on the events playing out in your life.
Things That Make Me Happy (in case you were wondering)
• Cold, wet puppy and kitty noses
• The smell of rain on cement
• Fresh cut grass
• Floppy dog ears
• Sore muscles from exercise
• Fresh peaches
I could go on….
Because I always must have anxiety in my life, I’m feeling anxiety about having a new perspective of “happiness” in my life. I think the anxiety comes from acknowledging that I do not have control on life and accepting that fact. However, I remember an episode of Blues Clues (very reliable source) that taught about changing your fears into excitement. Actually, I think it was about changing your nightmares into silly scenarios instead but that isn’t the point I’m trying to make. The point is that I have the power to accept what I cannot change and I have the power to create a more optimistic outlook on life.
So, who’s ready to focus on “happy” during June?!
The best year of my entire life was my first year of college, 2011-2012. Everything was new and exciting. I was starting veterinary technology classes, I was living in the dorms, I went on my first date that was completely awkward, then I met my boyfriend who I would later marry. Everyone I loved was alive and everything was perfect. I lost a lot of weight that year. I walked around campus constantly. I stayed out late with friends. I snuck into my boyfriends dorm or he snuck into mine. I got drunk off my butt and had some funny stories to share. My friends laughed at me because I had no clue what I was doing with the cigarette in my hand. My roommates and I stayed up late either having deep conversations or giggling at each other. I had the most intense study sessions. I felt like I was going to make a difference some day. I absolutely loved my science labs, choir class, and being free.
It seems like a lifetime ago. It seems like just yesterday.