Posts Tagged ‘Aspie’

Lately, I’ve had a lot of parents ask me what exactly is it like to have a Sensory Processing Disorder (SPD), and why it causes tantrums/meltdowns. So I’ve decided to write a post directed at trying to explain what my SPD is like, what it was like when I was a child, and how I reacted when I became overstimulated by the senses.

First, I have to say that SPD occurs in people with ADHD and others as well, who don’t have an autism spectrum disorder. So it’s not something that’s a definite part of autism, from what I understand, but more often than not, at least a few senses are affected.

I happen to be one of those lucky people to whom it affects every sense. What do I mean by SPD? Well, it’s when a person’s senses are either hyper (over) sensitive or hypo (under) sensitive. In some people it’s just one thing, like hearing, in others, it’s everything. I can tell you that as a kid, it wasn’t easy living with SPD, I didn’t know I had it, or that I was any different than anyone else either. But I was a fearful and skittish child as a result of it.

So SPD affects all my senses. To sum it up, I have hypersensitivities regarding hearing, touch, light, smell, and cold. On the other side, I’m overly tolerant to heat & burns, pain, and I have poor vision.

This means that 1) In a room filled with inconsistent noises I hear everything at the same volume, which distorts my ability to understand what’s being said to me. That’s where the Auditory Processing Disorder comes in. But that’s a whole different thing entirely. 2) I have sensitivities to touch and texture, for example, I can’t wear jewelry, as it scratches up against my skin. Clothing irritates me, I cannot sleep unless I’m au naturel because all the twisting and bunching of the clothes drives me insane. Even certain foods I cannot even stomach, because the texture of the food will make me sick immediately as I try to eat it politely. 3) I’m very sensitive to light, especially flourescent light, and I can easily be blinded by the sun at the beach or over the snow. With light bulbs, they literally hurt my eyes. They also irritate me to no end with their flickering and humming. 4) Smell. Highly sensitive to smell, good or bad. Either way it can affect me negatively. 5) Tolerance to heat is something that is good in hot weather. Actually if it isn’t 80F, I’m not warm enough. You will see me shiver and turn blue in weather below 80F, this goes for water temperature as well. This is where the oversensitivity to cold comes in. It’s 71F in my home right now, which is damn chilly for me. 6) Pain. Being hyposensitive to pain is a pain in the ass actually, since I have chronic pain conditions. When the doctor asks me to rate my scale of pain, I have to estimate going by what I think other people would say, cause I have a tendency to ignore pain. This ignorance of pain has landed me in the hospital dying before. Not a great thing overall. It’s something I tell Aspie/Autie moms to look out for in case there is a health problem that a child seems to not notice, especially as they hit their teen years. 7) Poor vision – self-explanatory. I had laser vision done to correct it a few years ago.

So where do I start? Say I’m sitting in my home alone, typing my blog. There is a distracting slew of noises surrounding me, the cars buzzing down the nearest highway, the industrial building nearby sawing or whatever all that chaos is, trash trucks up and down the streets, a ticking clock, several snoring cats and a squirrel on the roof. The TV is off, but I can still hear (and feel on my skin) the current of electricity powering all that equipment. Most people wouldn’t notice these things and they would be able to concentrate on their writing. Not me – each little noise hits me at the same volume, intermittently and unpredictably. This is distracting by itself, but when you factor in the unpredictability of the sounds, you then get anxiety, which automatically turns on the fight or flight mode. As a kid, this would have been a sensory overload, and a meltdown. I didn’t tantrum, I was too quiet of a kid to be loud. Instead, I would begin to cry uncontrollably, unable to speak, voice chords frozen in fear of what I didn’t understand. Now let’s add a little touch sensitivity. I put on, or say mom put on me, a thick turtleneck sweater. Imagine the terror of feeling like you’re being strangled to death. Not good. That’s enough to cause a meltdown by itself. Let’s add light sensitivity. A classroom, with row after row of tubular fluorescent lighting, the room lit like a fantastic Christmas display. Bright and blinding, but not only that, the humming and flickering of the light is just one more thing to distract me. One more thing to pile on the overload. Let’s say the room was just recently cleaned, using bleach. While no one else notices it, I’m literally choking and gagging trying to breath and then wham! asthma attack. Ok, what else can I overload myself with? The cold. School was always a nightmare for me, as the temps in the winter were barely enough to sustain my body warmth. Without a coat, there would be a blue, shivering girl in class who can’t pay attention to the instructor because I would slowly be freezing to death. I think this is a good representation of what a child might encounter in the classroom, and demonstrates how easily our fragile sensory systems can be overloaded.

So what are the solutions? Well, everyone is different, but I’ll share some of the things that I have found work for me. When it comes to noisy, inconsistent distractions, my savior is music, loud enough to drown out all of the other noises. In fact, that is the only way I write, with loud music or listening to my ipod. The ipod comes in handy at other times as well. You’ve got to find something that will give your child some comfort and a break from that onslaught on the hearing and everything else. Imagine being in constant fight or flight mode, as if at any moment you’re going to be attacked by something. It really isn’t fun, and a child doesn’t understand why it’s happening, so it becomes even more frightening. 

For sensitivities to light, sunglasses are the answer. I wear them anywhere I need them, at night when the headlights are blinding me, in giant overlit retail stores. I also made it a point to get rid of all the CFLs in my house and use bulbs that are more Aspie friendly.

The cold sensitivity? I always wore my coat to school, and when I was sent to the principal’s office and told to remove it, I declined. And when my dad found out, he drove up to the school and gave that principal a piece of his mind. No one ever asked me to remove my coat ever again. I love my dad! I’m told that most people on the spectrum are insensitive to cold, so they’re the opposite of me, and may be bothered by heat instead. 

All of these things point to finding out just what your child’s sensitivities are, and then working to find solutions that will minimize that fight or flight anxiety mode. Typically, someone sensitive to touch prefers soft fabrics, tags removed, seams that aren’t irritating to skin. No turtlenecks or scratchy wool please!

What is a Sensory Processing Disorder and what causes it? I don’t know what causes it, and I’m sure there are a ton of theories about how it develops. My understanding is that it’s a difference in how our brains are wired, compared to the non-SPD population. I like to say I’m “creatively wired.” I hope this post has helped some of the parents out there to understand their children better, and how they can work to find solutions that will decrease the overload, and hopefully, the meltdowns. I’m always here to answer questions for anyone. For more information on SPD, please refer to http://www.sinetwork.org/about-sensory-processing-disorder.html

~ Namaste







Read Full Post »

I had to write about this subject just to get it off my chest. This is an example of how the medical community reacts to and treats people with AS. To start off with, I have a medical condition called interstitial cystitis. It’s a very painful bladder disease and when it flares up badly, it can mean pain and it can mean getting up to go to the bathroom every 30-40 minutes to pee around the clock. When the flare lasts a few days, it mean NO SLEEP FOR ME. And what do you think happens to people when they get no sleep? Correct! You will become emotionally unstable.
So, in this condition, on 9/27, I arrived for my appointment with my IC specialist, a nurse practitioner. Of course, upon my arrival, I’m told that I owe $25 for a no show appointment. Which only upsets me more, because I had called the office the night that I missed to see if I could reschedule the appointment, and was greeted by a recorded message saying that the office was closed for the day. In my experience, this can mean only one thing, my Aspie brain screwed up the day. Perhaps, with the auditory processing disorder, I didn’t hear the date correctly when they called to confirm it.
Anyway, so that was that. No excuses for me, no understanding of my explanation, no matter that I had never missed an appointment in 3 years! Too bad – you owe us I was told.
By the time I got into the appointment I was in a meltdown state. My husband was with me, concerned that I hadn’t slept and was emotionally in a dark place. I say dark place, because, when you are in chronic pain, and chronically sleep deprived, the brain starts to shut down, it HAS too or I’ll become overwhelmed. It shut down in that I was tired, so tired of it all, to me, living is harder than death. For the last time, I wanted to try another anti-depressant. The NP was reluctant to try anti-depressants, whether it be due to inexperience or the past reactions I’d had to a few others, I don’t know.
I explained to her my whole situation, the lifeless feeling, the anxiety and depression, the sleep deprivation. Casually, she asks if I’d like to go to the ER at Hahnemann to be evaluated and get something to help me sleep.
We naively agree to do this, thinking that it will be quick, and sleep will be possible again. What I have learned from the experience that followed this decision is that YOU NEVER SHOULD ASK FOR HELP. Weather the storm myself, as I had always done before. And NEVER, EVER trust a doctor.
That night was horrid, like something out of a long nightmare where you just can’t wake up. After 7 hours, they finally let me go. I’m not going to go into the details, about the way I was treated there, because that could take up an additional note.
Leaving Hahnemann, with no help, was the straw that broke the camel’s back. I could not believe that I had been literally tortured for the last 7 hours with blinding fluorescent lights, excessive noise, freezing air conditioning (which I detest), and eldless conversations over the reason I was there. They had given me nothing. Just a note that said “Follow up with PCP.” No referrals to therapists, not even 1 little pill to help me sleep. Free to go. $50 lighter in the old pocket.
I had done everything I was supposed to after that. Went to PCP, went on the recommended medication, finally found rest in sleep. But none of this mattered.
All that mattered was that I had Aspergers and I was emotionally unstable. Dr No Name Surgeon undoubtedly made that decision upon reading it on my chart the next day. I received a phone call saying that my surgery (that I had waited months for, filled up tons of questionaires for the study I volunteered for, and paid to have a pre-op exam and bloodwork for) was canceled. Indefinitely. So whatever. I was pissed, but it was nothing to be upset over compared to what would come next.
I called to make my next appointment for bladder injections, since I wasn’t going into surgery, I was going to need them. To my surprise, the NP gets on the phone and explains that the office refuses to see me or treat me in any manner until I’m under the care of a psychiatrist. So I just have this to say, if I’m depressed and diabetic, does that mean a doctor could refuse my treatment? If I was pregnant and depressed, could the doctor refuse to do any pre-natal care until I fulfilled their vague requirements? What it came down to is this: because I was depressed and had Aspergers Syndrome, I must be under the treatment of a psychiatrist in order to receive my treatments.
And what does that mean, “under treatment?” It means that they can refuse to treat me for as long as they want, until I meet their requirement of what they consider to be “under treatment.”
In addition to this lovely situation, the new psychiatrist is going to take all my willpower not to tell the arrogant man off. Within 5 minutes of meeting me, he had dismissed my AS diagnosis and the professional who gave it to me. The further we went into discussion on the day we met, the easier I could see where this man was headed. Yup. He’s headed right for a Borderline Personality Disorder diagnosis. The same misdiagnosis I received at the age of 16. I have no doubt this man will try to relabel me with something that doesn’t fit me. But that’s ok. I’ll have my day to tell him what I really think eventually. Eventually I’ll find a good doctor and leave.
I don’t think any of the bs that occurred would have happened if I had been anyone else. If I had been someone without AS, I would’ve been fine. Treated well and fairly. But because I have AS, it scares the hell out of them. And they run and hide, and tell me that they refuse to treat me until I’m “cleared by the psychiatrist.” Whatever that means. Basically, my prediction is this: 1) I’m going to end up with a shiny, new label and 2) Dr No Name’s office will continue to refuse to treat me.
So we’ll see what happens…

Read Full Post »

“Let them say all that they want, I’ll wipe away your painted wings, till your heros come…” ~ Evans Blue

I am painted. In a spectrum of numerous colors and personalities, that wash over me to the tune of time, and what it requires of me in that given moment. It has been a long time since I have blogged…and for a good reason. I’ve actually been pretty ill, and I’m not able to work my job right now. I had been concentrating on writing my memoir, and organizing the thousands of photos I’ve taken in the past six months, in the hope of putting together a nice website to show them off. But I digress.

And regress. I have noticed something different about myself, and yet it is very familiar. As the obstacles in my life continue to surmount at an increasing rate, my ability to disguise myself as a neurotypical is slipping. That paintbrush of colors that I depend on to become the person I’m needed to be to others is beginning to blur together. More and more I find myself doing things I haven’t done since I was a child. I will sit in place and slowly rock, and visualize something that calms me. Something like our vow renewal on the beach in Costa Rica last year, or our recent trip to Jamaica and the feel good vibe of Negril. In that completely visual brain of mine, I can transport myself to a place in time where I felt safe and happy.

I now go out of my way to avoid other people, and sigh inwardly when some happy, bubbly NT decides to blabber about her week when I sit down in the doctor’s waiting room. I know, it sounds really inconsiderate of me. But I really just want to be left alone. I don’t want to put on the superhero mask, and pretend I’m bubbly and love to talk about the mundane right now. It’s like I don’t have the strength anymore.

Yesterday, I read an article by Liane Holliday Willey, about supporting our elder Aspies. You can read her article here: http://www.psychologytoday.com/blog/the-pragmatic-aspie/201108/supporting-elder-aspies.

It struck a chord with me for many reasons. One, it reminded me of my father, who has been diagnosed with Alzheimers. I see so much of myself in him, and I really do feel that he is being fed pills to control a disease (Alzheimers), which I strongly feel is not the real issue with him. I think he is an Aspie like me. Maybe he has both issues, but no one will listen to me.

Two, the topic of regression struck a chord, precisely because I am witnessing it in myself, NOW. During a difficult and painful time, my brain is taking me back to my own Aspie roots. And it is doing it more and more often, to protect me I guess, from that scary uncertainty that is now my life.
In this life, where I have very little support from others, this is how my brain is protecting me. I have my husband, and I have my mother, she checks in on me weekly, and then there are a few facebook friends who look in on me. But other than that, I am alone…and my fear of the future and that of being alone has somehow turned back the hands of time, to when I was a powerful visualizer…in order to escape the garbage that was my childhood.

It is interesting, and disconcerting, to be able to sit my husband down, discuss Liane’s article, and say, “These are the things that will happen to me.” And how do I know? Because my beautifully colored wings, that enable me to fly in the “normal” world are but only paint, and paint does not last forever. Eventually, the paint will wear off, and the Aspie me will appear yet again, as she is struggling to do so now. Odd, the ability to see one’s future, isn’t it?

Read Full Post »

Today, I was reminded yet again, that no matter how much I try to “blend in” with neurotypicals, it’s just never going to happen. That wall will always be there, to serve as a reminder that I will never belong in the neurotypical (what you would call normal) world. I was sitting at my desk, in an office that I share with another coworker. A coworker who I like, she’s very similar to me. (Quiet, doesn’t like bright light or lots of noise, and doesn’t hang out at the coffee pot every morning socializing).
Well, the women that work upstairs are good friends with my coworker, and through her, I always tried to be social and friendly to them whenever they came downstairs to see my coworker. But no matter what I do, I just don’t fit in. If I try to get in on the discussion I just get lost, sometimes just lost or ignored. I still can’t crack the social code.
So a few months ago, I had given up on being genuine friends with any of the women who work upstairs. And I had given up on having any real friends at work period. Because while I usually get along with, and have more in common with men, at this age it’s an impossibility to have men as friends. They’re all married and have children, and to be my friend, or even to talk to me for too long of a moment would be inappropriate. So I accepted that I was alone at work, there was no possibility of friendship for me there. This acceptance really slapped me in the face when I was told that one of the women upstairs had complained that my Facebook photos were offensive.
I happen to really enjoy boudoir photography, and I have never posted anything inappropriate or offensive in any way. All of the photos I post are tasteful, and the majority of them are blocked in an album which only close friends and family can see. See, my family always wanted me to try to get into modeling. So here I am, modeling for boudoir photography and having a lot of fun doing so, just for me.
Anyway, the fact that someone reported me to my work shocked me. It was another slap in the face. Why? Because I only wanted people on my friends list who were friends, who I interacted with regularly. I never friend requested anyone from work. They began friend requesting me. So what was I gonna do? Be labeled as the bitch who wouldn’t accept friend requests? So I decided to accept them, and I just blocked them from my boudoir album and profile pics. And then I got a little too comfortable, I decided to be who I really am, and I unblocked them. I received a complaint in no longer than a week, and was told to block all coworkers on my list. So I did. And I removed my workplace from my information. I now work at a “Secret Government Agency.”
So I guess I had accepted it for a while, that I was alone at work, there would be no friendship there for me.
But then today, one of the girls I personally like, called my coworker to see if she wanted something for lunch from the restaurant across street. A group of them were all ordering. No one thought to ask me if I wanted anything, considering we were all stuck there due to the weather, I would’ve thought…
But I guess I was wrong. I have a few friends outside of work, and that’s just the way it is. But the best friends of mine who are men are pretty much unreachable now due to their wives’ views of me. Am I threat? Oh well, to hell with it I guess. All I can do is keep moving along, knowing I have Dale, Melissa and Shannon, and a few other friends to get me through the mess that is my life. And I have my parents, my brothers, and my sister. I guess that has to be enough.
All I know is that I’m not going to pretend to be someone I’m not. I’m not going to hide who I am, what I like, or what I do in order to please others. If you can’t accept me the way I am, then you aren’t worthy of my time. So although it may hurt a bit when I get snubbed from a restaurant order at work, or get unfriended on Facebook because I happen to like boudoir photography, I’ll go on. And I’ll always be true to myself.

Read Full Post »

“All God’s angels come to us disguised.” ~ James Russell Lowell.

I stood, my bare feet sinking into the slimy soil at the bottom of the lake. I was knee-deep, my brother Greg, leading me into the water, wielding a bright flashlight. It was dark, and normally the water would frighten me at night, but since my brother was there (who I thought was the coolest and smartest person ever), I didn’t feel even one bit of anxiety. We were on summer vacation, hanging at Beachcomber Campground, my favorite place to vacation in New Jersey. I was young, probably around 5 years old, maybe younger. Our mission of the night – to catch some bullfrogs!

As usual, I can recall this memory with perfect clarity, and each time I think of this particular memory, I smile. Most little girls would have no interest in wading into a dark lake with a slimy bottom in the dark, to catch even slimier frogs. But not me. I was ecstatic, and determined to catch a frog, to hold its little body in my hand, to feel its tiny heart beating, to feel, in my own hands, the miracle of this living thing’s precious life. Not that I could explain that to my brother in so many words. All he knew, was that I was in on the conquest, his faithful follower of all adventures.

At this age, my hand and eye coordination and dexterity still left much to be desired. But I was determined, I would catch a frog, a precious gift from God, and then let it go, return it to its home. My brother Greg showed me the flashlight. “All we have to do is shine the light in their eyes,” he said, “and then they won’t be able to see or get away.” I believed him. He swiftly caught his first frog, and then another. Then it was my turn. I caught one, cradled it in my hands, like it was fragile and needed to be held with much care. Greg wanted to catch all of them, just for the fun of it. But we needed something to put all the frogs in. So he snuck back to the old pop up camper while I examined the miraculous creature in my hand. It had the most beautiful eyes. It was almost as if we were communicating with each other. The frog was calm and had no fear of me, but it wanted to be let go.

When Greg came back, he was carrying a large cooler. We filled it with some water, and proceeded to have a ball catching frogs, until I think we caught so many we couldn’t fit anymore into the cooler comfortably. Bursting with pride over our successful frog hunt, we took the cooler back to our camper, to show mom and dad. Greg opened the lid, and my parents burst out laughing over the sight they saw. Bullfrogs flopping everywhere in the cooler, croaking, and all trying to get out of the cooler. The ones who made it were quickly scooped back up and into the cooler, and the lid was closed. My mom insisted that the frogs be taken back to the lake right away. So off we went, and I watched with wonder and joy as all the frogs hopped on back into the lake, happy to put the distance between us. That was the night I began to wonder at the miracle of life, its impossibility, its fragility, and the presence of a higher power, the one behind all these wondrous living creatures.

My parents always encouraged my love of animals, no matter what form that animal took. I guess they just figured I was going to grow up to be a veterinarian or something. I remember, it didn’t matter what time of night it was. It could have been 1:00 AM, but my mom would wake me and my brother Greg up to see the possums that used to wander our back yard, looking for food. I would stand, transfixed, eyes glued to the night creature with the long rat like tail, filled with amazement.

Amazement. That describes the way I feel whenever I’m in the presence of one of God’s precious creatures. My heart fills with love, amazement, and my eyes fill with tears. Tears at just the gift to witness such beauty. Today, the same thing happens to me. As an example, Dale and I were visiting the Belize Zoo, and we had the pleasure of seeing a caracal (one of my favorite wild cats) up close and personal. She was right next to the barely perceptible fence, lounging. I was in pure awe. Struck by her beauty up so close, and thinking to myself, “How could there not be a God? How could something of this beauty exist without a hand to guide its existence?” My eyes welled up with tears. Once I got a grip on myself, I poked the camera’s lens through the fence, and began to photograph her. She had a look of pure contentment on her face. She looked up at me, and then rolled over, exposing her vulnerable belly. I snapped away with the camera. We almost missed our flight home that day due to my connection to the wild cats. I had spent much time prior to the caracal trying to get a great pic of a margay, another one of my favorite wild cats.

That’s the way it’s always been for me. Since I was a kid. I am stunned by living things. As a kid, I followed my brother Greg everywhere, because he thought the same things were cool that I did. At night, we’d wander down to the wooded area of our section, trying to spot bats flying in the trees, in between a good game of manhunt. And it was Greg who made my love for even insects bloom, when he introduced me to this little miracle he called a cicada. They came around in the summer. At night, we would wander about the yard and woods, looking for the green, creepy looking insects crawling up the trees to be reborn. Once we found one, we would park our butts on the ground with a flashlight and watch. Watch the transformation. The way the insect’s shell of a back would begin to split, and then the creature would carefully crawl out and hang on the shell, a beautiful shade of green with crumpled up wings. We’d watch as the wings dried, and became beautiful wings that reminded me of a pixie or a fairy’s wings.

All of my life, I have felt the presence of a higher being when I am with animals, babies, or in nature. I have always believed that I was surrounded by God’s messengers, who appeared to me in many forms, either to inform me of their presence, or to give me a message. As a child with ASD, I’m not really sure which it was back then. I have since learned that my guardian angels appear at regular intervals, sometimes to give me a message, sometimes just to let me know they are there when I need them most, and sometimes to protect me from harm.

Sometimes, God sent me a guardian angel to watch over me. At this point, some of my readers may think that I’m delusional. But that’s ok. The only thing that matters to me, is that I’m sure these angels were sent to me because I was autistic. Young, naive, gullible, and emotionally and mentally immature compared to others of my age, I needed someone, something to protect me from harm. Someone to watch over me and protect me at such a vulnerable age.

The first angel I ever met, came into my life when I was so young, I don’t really ever remember him not being there. His name was Tasha. He was a traditional apple head, mixed breed Siamese cat. We got him from a litter of kittens that my aunt’s cat had. He was supposed to be my sister’s cat, but there was no doubt that I belonged to him.

We were inseparable. Wherever I was, he was. He slept with me every night, wrapping his lithe little body around my head as if to protect me from the outside world. Maybe he was even trying to protect my sensitive little ears from the sounds that kept me up at night, tossing and turning. When Tasha was there, I had no night terrors. His soft, furry body ensured that no bad dreams would be able to enter my head either. He was, in reality, my best friend, my only friend at that time. You see, I didn’t have many friends, because I just could never seem to fit into any of the elementary Catholic school cliques. Even though I could relate more to boys than girls (I mean, climbing a tree and catching frogs was much more interesting to me than, say, hop scotch or jump rope), the Catholic school boys didn’t like me either. They made fun of me because I didn’t have the dexterity and hand eye coordination to play sports in our poor excuse of a gym class. No one ever wanted me on their team, and I was always the last person left to be picked, no matter what kind of game it was.

So it was that Tasha was my only friend, besides my brother Greg. Tasha never left my side during the day. I could be in my room, playing with dolls and he would be there. Bored with the dolls, because they weren’t real, breathing beings, I would take the doll clothes and put them on Tasha. I’d then put him in my little baby stroller and push it around. Never did he try to squirm or fight me when I dressed him. Not once did he jump from the stroller and high tail it for somewhere less embarrassing either. I never knew that wasn’t normal cat behavior, I just thought all cats were like that.

If I went outside, Tasha went with me too. Sometimes we would play with my brother Greg. Greg used to take Polaroid pictures of Tasha and I, I guess back then Greg must’ve thought I was cute, and not the annoying teenager I was to become in the future. Anyway, in every photo that Greg took of me outside, Tasha is right there, either next to me, or in front of me. In one particular photo, which is framed on my dresser today, Tasha is gazing up at me in pure adoration and love. I’d have to look at the date on the photo, but I think I was three years old. Standing there holding one of my toys that I had fixated on for a period of time, a stuffed toy mouse that I took everywhere with me.

When I was old enough to go play by myself, I always headed for the woods of Juniper Hill. It was the only place I could go where I could feel normal, and enjoy again, those feelings of a master creator. Tasha always came with me. If I went to the woods, he was by my side, not running ahead or lagging behind, but always by my side. Back then, I thought of him as my fellow explorer. But what he really was, was a guardian angel. I have no doubt that he influenced where I went, and kept me out of harms way. Sometimes we did get into a little trouble. I’m thinking of the time we were wandering through the woods when my foot plummeted directly into the hole of a giant yellow jacket nest. I pulled my foot out, but it was too late, we were being swarmed by the stinging buggers. Both of us ran home together, me swatting at bees with my hands, and Tasha running as fast as he could to outrun them. We both needed treatment when we got home. I had gotten stung so many times, it’s surprising I didn’t have an allergic reaction to them.

For years, Tasha and I were together, and I never thought we would ever be separated. But I guess, once that angel had taught me, and protected me as best he could, it was time for him to leave. I remember when Tasha got sick, and it still brings tears to my eyes to think about him. He had become ill with a virus, or maybe it was his kidneys, I don’t remember the specifics. All I remember was that my best friend was as thin as a rail, and he wouldn’t eat anymore. I would open a can of tuna, and sit there on the floor, begging him to eat. He refused.

My mom came to me soon after and explained to me that Tasha was very sick, and he wasn’t going to get better. She told me we had two choices, to let him die at home with us, or to take him to the vet office, where they would give him something to put him to sleep peacefully, and he would feel no more pain. I could already feel Tasha’s pain, it had struck me like a brick wall, and brought my foundations crumbling down. “No,” I said, “I don’t want him to feel any pain anymore.”

And so it was decided. That night, Tasha came into my room as usual and sat by my head. I asked my mom when she came in if I could hug him, and she said she wasn’t sure. I think she was afraid that I might get sick, I don’t really know. But it didn’t matter, because that night Tasha didn’t curl up around my head like he usually did. He sat there, gazing at me, me gazing back, my eyes full of tears, his eyes full of love and concern. He was watching me, guarding me yet again, trying to comfort me, saying goodbye. And I knew he was saying goodbye. I cried as I lay there, and finally I fell asleep. The last thing I remember is Tasha watching me, looking into my eyes, telling me everything was going to be ok, that it was time to go to sleep. That was the last time I saw him alive.

Mom brought him home the next day, wrapped in a blanket, and we buried him under the pear tree in the back yard. It became a sacred place to me. But I never felt the influence of Tasha disappear from my life. He continues to exist for me to this day, and sometimes I even thought I saw him around the old house after that. No doubt checking in on me.

Tasha was the first of many beautiful angels to come into and bless my life with guidance, protection and unconditional love.

Read Full Post »

Memories and images. Like a movie reel that constantly flows through my mind, the images are as clear as a shining piece of crystal. Every life experience is there, every breathing moment, guiding me, influencing every decision I make each day. Thinking in pictures. Not everyone thinks in pictures. This is something I only found out recently, when I was diagnosed with AS. It is also something that I can’t possibly even begin to comprehend. How can there be any other way to think? The gliding flow of images in my mind, some all the way to back to my infancy, just seem so….natural. Real. The only way to think.
I do realize that there are many people who aren’t on the spectrum who are also visual thinkers. But this post is directed towards the fact that most people on the spectrum are specialized in thinking visually. We are the engineers, the oddball science professors, the inventors, strolling through life under the radar, undiagnosed.
So then, what is it like to think in pictures? What other ways are there to think? Apparently, most people think in words, some think in numbers. These are impossible ways of thought to me. I love thinking in pictures. Because I never forget. I never forget the way a place looks, the way I felt at the time, the smells, or the way others looked. Thinking in pictures is a gift to me. Without it, I wouldn’t have this incredible way of not taking anything for granted. Without it, the emotions that guide me through life wouldn’t be nearly as prominent.
My earliest memories are of my infancy. There are times when I hear flickers of what I think is my actual birth, but those memories are so faint, that I can’t be sure if they are real. The reel in my mind of this particular memory is not actually visual, but it is in audio and touch. I hear my own crying, and I feel many hands around me, touching me.
After that, the memories become more visual, but they aren’t consistent. I have a very profound memory of my mom, gazing down into my crib in the downstairs bedroom, late at night, whispering to me that I was such a beautiful baby. The memory is so clear, so present, that I have tears in my eyes as I write this. Another memory that makes me feel tearful, is that of my grandmother, my Babcia. I guess I was in some sort of baby carrier, babbling, when she leans forward and tells me that babies talk to the angels. I believe she was completely correct in her statement, since she was such an angel to all of us.
Toddlerhood is more consistent in my mind, and so full of innocence and joy. Running with nothing on but a diaper, in my aunt’s beautiful backyard. I loved that yard, with it’s great, stunningly beautiful weeping willow, loved the way the willow branches would brush against my face in the wind, whispering to me. The swing that hung from the willow, the action of swinging and how it felt so soothing, so natural and real. The gorgeous swimming pool…and the sign, “No P in the Pool”. Surrounded by my loving family…I feel so lucky to have these memories so clearly. Blessed would be a better word.
I get a little older and the pictures become even clearer. So clear, actually, that as a teenager I used to talk to my mom about them. Both of us pondered whether I was remembering images from another life at first. But then we figured it out…I was remembering my aunt, babysitting me. The setting is Levittown, Golden Ridge section, I think. I might have to double check on that. But I remember there was a cool cemetery nearby, and I remember my aunt caring for me. Another loving family member, another precious memory.
But thinking in pictures isn’t all fun and goodness. I remember the bad things as well, and when you have an autism spectrum disorder, there are many things to fear. For me, that was anything unknown, anything with bright light, crowds, loud noise, anything that felt like an assailant to my fragile sensory system. I had night terrors. Terrible, terrible nightmares about these things. What I feared the most as a toddler, was bright light, falling, and water. My night terrors consisted of blinding light, and as I mentioned before, one of the sources was the pendant light in my upstairs bedroom. The bright fluorescent light terrified me, and in those dreams it would blind me, burn me, take away all of my vision of everything else. Everything I knew. To me, in those dreams, I was being kidnapped by the light, taken away from my family, the ones who protected me from all that was unknown, and therefore extremely frightening.
When I dreamed of water, I would drown. I could never escape the pull of the water, and would wake up screaming just before my lungs would fill with the dark and sinister water. It was the same with falling. I would wake up just before I would fall into what I pictured as the black hole I guess, a place of infinity, a place of which there was no return.
And every time, my mom would be there, holding me, cradling me, soothing me with her sweet words. Sometimes, she would get out some little books, and read to me until I became calm. Once, one of my night terrors occured on a night that it was snowing. It transformed my terror into something magical, as I gazed out the window at the big fluffy flakes swirling down from the sky, my mom holding me, and reading to me a story about a mouse.
It’s difficult, I think, to really describe how I think and perceive things. But this is a start for me, and I hope it has enabled some of you to understand the mind of a child with AS. The film reel continues to roll, each day recorded and filed away in my mind for perfect recall later. Memories of early childhood are a theme for some children with AS, as are sensory processing disorders, anxiety, and fear. All of which I feel contributed to my night terrors. This is just the beginning. As the reel continues to roll, these words will continue to flow from my fingers, as natural as the silent flow of water over the rocks of my beloved creek in Juniper Hill.

Read Full Post »

Face blindness, or prosopagnosia, is said to affect many with developmental disorders, such as autism spectrum disorder and non-verbal learning disability, as well as those who have suffered from some forms of brain damage. Again, in view of the fact that I have both a non-verbal learning disability and ASD, it would appear that I really am a textbook case for all things ASD related. So what is face blindness?
The simplest way for me to explain it is to blend a little of what the experts say with a little of how I perceive it to affect me. For me, face blindness means that I have extreme difficulty recognizing people. And it doesn’t matter if you are a co-worker, a friend, a family member, or even my husband Dale, I simply will not recognize you right away and certainly not from a distance, even a short one. I also will not recognize your voice over the phone, for what I believe carries the same explanation. This is one reason that I thank god for cell phones and caller ID, so I know who’s calling. That, however, doesn’t lend me a hand when I call others, which makes me anxious, and unfortunately prevents me from making many phone calls, unless I know for sure who’s going to answer the phone.
From what I understand, my differently wired brain remembers people through a combination of factors, such as mannerisms, voice, and the way they interact with their environment, instead of solely on the visual processing of a person’s face. So until these things are observable for me, I don’t recognize you. And I’m not kidding when I say I don’t recognize anyone, even family. It’s not until a person gets close enough for me to hear, see, and study that they begin to look familiar to me. This process can take several minutes of close up interaction.
For those of my friends who wonder why I often ask them to meet me outside of a restaurant, and for those who wonder why I prefer email and texting over actual phone calls, you now have an answer to that question. It’s because it makes it easier for me to find you, recognize you without wandering aimlessly through a crowded bar, peering into faces and disturbing people. And it makes it that much easier on my anxiety levels as well. If I do have to find you in a crowded place with my anxiety at a record high, it will then turn on the auditory processing disorder, which will have the undesirable effect of making it difficult for me to understand what you’re saying as well. And when it comes to phone calls, I have only a voice to go on. No mannerisms, no interaction with the environment, and no expressions. Although eventually, I will recognize your voice, it won’t be until long into the discussion, with laughter being the trigger for my recognition. My suspicion is that laughter is musical, which is like heaven to me, and has always served to calm and soothe all of my senses.
I find it interesting that face blindness is often seen concurrently with abnormalities in EEG measurements (what you might think of as a brain scan). I too have what are considered abnormal, unchanging EEG measurements, consistent it would seem, with face blindness and (I believe) 30% of those on the autism spectrum. What I also find fascinating is that I have no trouble recognizing people in photos. The research seems to support that there is indeed an emotional aspect to face blindness. In other words, your photo is just a picture of you, a simple object, it’s not a living, breathing being, interacting with anything.
Face blindness played a somewhat distinct part in the finding of the pieces to my personal autism puzzle. How many times, as a teenager, had I walked past someone I knew in the mall (for example, boyfriend mentioned in earlier post)? How many times had I been labeled a bitch, or stuck-up by those I wasn’t even aware of, when they were trying to catch my attention? I always wondered why I could never find anyone I was looking for, recognize my friends on the phone, or why I continuously piss people off by failing to acknowledge them in Home Depot when they were three feet away from me. I don’t know how many times I heard through a third party that so and so said I was a cold, unfeeling bitch. And for the longest time, I thought I must be. I know better now, and I’m not afraid to tell others about any of it. And that’s why I’m here, writing. So that maybe, the next time you meet someone you know (from work maybe) and they walk right past you in the grocery store without saying hi, just maybe you’ll remember my story. Just maybe, instead of thinking, “What a royal asshole!,” you’ll give that person the benefit of a doubt. Instead, hopefully, you’ll cut her a break and think, “Hmmm…maybe she’s on the autism spectrum.” At which point you’ll walk up to her, and say, “Hi. I don’t think you saw me back there.” It would mean so much to me, and all of us spectrumites, if you did that!

Read Full Post »

Older Posts »