I grew up an ASD kid who went undiagnosed until adulthood, which was hard. I wonder, however, if growing up without knowing I was autistic was a blessing or a curse. Perhaps it was indeed both.
Please do not misunderstand me, I am glad to have a diagnosis. Glad to finally know what is “wrong” with me; glad to finally have been able to fit the pieces of the puzzle together. But this isthe thing–i didn’t know, no one knew, so no one told me, “I couldn’t.”
Today, I do have a better grip on my own limitations, and there would have been a lot of heartache avoided had I known. However, I wonder if I would have what I do today if things were different.
No one told me that I would never be normal. They didn’t expect me to not succeed, not find love, not have a family. I never considered these things could be difficult.
An email from a fan this week caused me to start thinking about how we view our ASD kids. What does the world expect if them; what are they bring taught about themselves? Are we telling them and the world around them not to expect much? Or do we encourage and reassure that their lives matter; that they will have good lives.
The truth is for some, marriage and family may not happen. But isn’t that also true for”normal” NT people as well? Life isn’t easy; it’s hard, for all of us autistic or not. Maybe we should, instead of focusing on the difficulties, the disabilities, and what seems out of reach, we should focus on encouraging, and reassuring them that they matter. We matter; we have much to offer; we can do anything we out our minds to!
An autism diagnosis is not the end of the world, our lives are not doomed. We just will have to live in this world seeing it differently, and find those who are willing to accept that to share life with.
After writing the memoir, I began to get nostalgic and started pulling out old photos. Then I thought, hey maybe you all would like to meet the cast. So I’m pulling old and often embarrassing photos to begin to post and give you some faces to go with the people in the story. I will also be looking for some old pictures of me as a child.
I have one in particular in mind, and believe me it is an embarrassing one! I remember my mother having a picture of me at Christmas time wearing those god awful pearly framed glasses that the eye doctor prescribed for me, “as a precaution” and to help with my “allergy to the sunlight”.
I thought pulling out the old photos and sharing them might be a fun thing to do…especially in between writing projects. (I guess I am never really in-between writing projects, as I am always writing something!)
My first and favorite is from my wedding (almost 16 years ago, 1997) …and it is my favorite because it has my Grandpa in the picture (who died in 1998 while I was preggo with Aspie Teen), and it has Grandma too!
By the way, someone gave me that dress (or something that resembled it) and Grandma pulled the whole thing apart and put it back together the way she liked it and in my size!
Thanks for following along my journey from childhood through offical diagnosis of my Asperger’s Syndrome. For those of you who own Kindle devices, I just wanted to let you know that you can download the book FREE today. So go ahead, click the link and get your copy!
To those of you who have or will read my story, it would mean so much to me if you would take a few moments and leave me a quick review on Amazon.
I did not forget about all of you who do not read on the Amazon Kindle… If you would like paperback copy of Twirling… please go to Goodreads (clicking the link will bring you right to my giveaway page) and enter to a FREE copy!
The paperback is not available for sale yet, but I am anticipating it being available shortly. In the meantime, headover to Goodreads and enter to win.
Now that I have wrapped up Twirling…Ok well it is still being wrapped up and packaged it is time to look at what is ahead. I have already begun brainstorm for my next project. I have had such a great time blogging this book that I‘ve decided I am going to continue to blog what I write, as I write it.
My idea for the next project is tentatively titled, “How to Love an Autistic Woman: Tips from a NT/Aspie Marriage.” Since none of the “normal” relationship books I’ve ever read applied to me, I thought I would go ahead and write my own.
This is the plan: The idea is to pick several relationship topics like communication, dating, marriage, intimacy, sex…etc. and talk about them from both the autistic’s perspective (mine) and the NT’s perspective (hubby’s) to try to begin closing the gap between the two, and hopefully help others who struggle with NT/Aspie relationships.
Warning…this is going to very difficult for me. You see the idea is for hubby and I to take turns writing chapters on each subject, and since I am a complete and total control freak I will need to exercise much self-control and let him write what he feels to write—without correcting him, or telling him what he “should” say. It may get interesting that is for sure.
So your turn…what do you all think? Do you like the idea? Any topics in particular that are a MUST to address in this type of book? As always I hope you all stay with me on this next journey, as your input is always appreciated and desired!
So where to start?
Oh one last thing, please bear with me if I change the theme of this blog a few times before I find something that works for the new project. I need to figure out a way for anyone who is still reading, or wants to read Twirling…to be able to so do, without it getting all jumbled together with the next project. I just haven’t figured out how I am going to accomplish it yet.
When I woke up this morning I still felt exhausted because I had not fallen asleep until after 2 a.m. last night. I have been having tremendous difficulty falling asleep lately (again): enter the famous Aspie insomnia.
This morning, however, unlike the rest of the mornings this week I did not wake up to grey skies or the pitter patter of rain drops, the sunshine was shining. In fact it was streaming through the curtains in my room, and although I was exhausted, I looked forward to getting out of bed to see the daylight—the sunshine.
I am aware that grey dreary days make many people feel “gloomy” or “sleepy,” but for me the problem goes far beyond feeling glum. For me, my entire body is affected, my mood, my energy, even my outlook on life itself is affected. I guess you could say that my moods quite literally changes with the weather.
Seasonal Affective Disorder, more commonly known as Winter Depression, is amongst the host of diagnoses I have received over the years. It is true that wintertime has always brought on depression for me, and the summer sunshine brought happier days. The problem is that even Seasonal Affective Disorder did not explain the drastic change in how I felt from day to day and sometimes even from hour to hour.
I had not considered, until I read something in a book by William Stillman called Autism and the God Connection, that this could be connected to my autism. Stillman stated that some people with autism are so sensitive that they can sense even the smallest ionic changes in the weather, and it wreaks havoc on their neurology.
That’s when it clicked! I have not read the entire book, but it is on my to-do-list mainly because this particular statement has resounded so strongly with me. I can feel the slightest change in weather pressures, humidity, and temperature, but again, never realized that all other people do not feel the same things.
I am literally uplifted and energized when the sun is shining and drained when the sky turns grey—even if little times had passed between the two. The slightest change in humidity affects my breathing, and temperatures changes have always wreaked havoc.
My issue with temperature is a part of my sensory processing disorder, or deregulation is this case. With my sensory processing issues, comes a temperature regulation issue. I cannot adjust to the changes in weather. I am easily overheated when it gets warm, cannot stay outside during very humid times, and even need to rest, relax, and cool down after a warm bath or shower. It takes my body a very short period of time to overheat, and an extended period to cool down.
The same is true for cold weather—I cannot adjust well. Despite how warmly I dress, I will immediately be frozen down to the bones, and have a difficult time warming up. Sometimes after long periods out in the cold it will take hours of shivering indoors to “warm my bones.” Feeling cold down inside my bones is the best way I can describe the feeling, but again, I just always assumed that everyone felt this way—apparently, they do not.
Part of my temperature regulation problem is that when I finally “cool-down,” it is usually followed by a quick shivering chill and a feeling that I need to warm up. And when I try to “warm up my bones”, it is usually followed by a period of overheating—very annoying. I live in a state of discomfort, many times putting on a sweater or blanket one minute, and throwing it off in a sweat the next.
I had never considered that these sensitivities could have been in any way related to autism—now, I know that they are. I am super sensitive to all kinds of stimuli—including ionic weather changes. Maybe I need to move to Hawaii…
Kindle Edition Cover
This is what I’ve been working on the past few days, and cleaning up all the typos and missed words throughout the manuscript (oh the fun). What do you think of the cover? I’m hoping to have the memoir available on Kindle by the end of the month, and in print within the next 90 days. Tight deadline, a lot of work, and I am feeling like a lumpy blob who doesn’t feel like doing much of anything besides sleeping, and lumping around on the sofa eating ice cream. Not good!
An except from Twirling Naked in the Streets and No-One Noticed…
I was born here, and part of me died here. The haunting echoes of my childhood lingered in the halls. I could hear it; run from it. I bit my trembling bottom lip determined to hold back the tears.
My stomach tightened when I looked at the empty rooms, my vanquished memories. The ones I’d thrust off to someplace new. Away from where the air was infused with freshly baked semolina from the bakery up the street. Where lunch was routinely a Sicilian slice from the pizzeria around the corner, or thinly sliced prosciutto and fresh mozzarella still hot from the vat, spread across crisp Italian bread. There would be no salmerias or delis in the Mississippi delta—no fresh baked cookies, Italian pastries or ices in the summertime.
I took a last look at the two-story brick house I’d grown up in, and the children running through the open Johnny pump, and then at the taxi waiting at the curb. The baby wiggled in my arms, as if he knew more than I at only eight weeks of age. One tear escaped from my eye.
Grandpa had stood in the same place that I did, in the shade of the dogwood tree. He’d worn a smile from ear to ear when he overheard the news. Three weeks later he was gone. I tucked a sonogram picture into his pocket as he slept in his mahogany casket. That was the beginning of the end.
My arms trembled as I looked up at the dogwood tree—my tree. Grandpa planted that tree ten years earlier, right in front of the house. He tore up the patch of concrete himself and then built a white fence around his gift. “See, a tree can grow in Brooklyn,” he said when he showed it to me.
My husband’s arm wrapped around my shoulder, “You ready to go?”
I nodded, and then watched him put the last of the suitcases in the back of the cab. The sounds of soft sobs drew closer behind me. My breath caught in her throat. I couldn’t speak, my chest hurt, and my feet felt cemented to the stoop.
My father’s tears always turned his eyes the brightest of blues. That day my eyes were gray. I knew I had to do this; a new life awaited us—a new job, a new house a new baby, a new place. It was my idea after all.
The sun shone through the trees; days this bright should not be so sad. Deep breaths, I can do this, I can say good-bye to this place.
“Jeannie, we’re going to miss our flight.”
An except from Twirling Naked in the Streets and No-One Noticed…
So why can I not keep my feet underneath me, or apply the correct amount of pressure when lifting an object? Why do I walk into a room like an elephant in a china shop, or send the milk contain flying across the room when it is too light? In a word—proprioception.
What is proprioception?
Proprioception refers to one’s own perceptions. It an unconscious perception of movement and spatial orientation controlled by nerves within the body.
Our proprioceptive system allows us to locate our bodies in space, to be aware of where our arms and legs are in relation to one another, as well as, where they begin and where they end. Proprioception helps us perceive the outside world, telling us whether our bodies are moving or sitting still.
This system helps us perceive the amount of force needed to complete a task, and then allows us to apply it appropriately. It helps us measure and perceive distances, allowing us to move through our world without crashing into everything around us.
Child and adults with autism often have difficulty with proprioception and very well may just be the thing that goes bump in the night…and the day, and at work, and in the streets. Poor proprioception may likely be responsible for those many bruises, skinned knees, and torn stockings that plague our days.
It can be difficult to explain how we, those with Asperger’s Syndrome/Autism, can be so clumbsy in our day to day activites, but so adept when we are intently focused. I spent a great deal of my life dancing. I could dance with the grace of a swan, and fall down steps on my way off the stage.
I believe the difference is the intensity of our focus. We can, for a short period of time, intensely focus on crossing a balance beam get to the other side. However, it is impossible to sustain that level of focus in all our activities 24 hours per day. I am sure that I would never fall down again, if I could focus on every step I took to the exclusion of every thing else—with no distractions and no interuptions.
While a “normal” person unconsciously perceives and is aware of each step they take, an autistic person must think about and focus consciously to perceive what comes naturally to others.