Being Quirky Can’t Be all bad…

Let me be clear on this point: You should be allowed to be free to be yourself, without any excuses. I know that I mentioned that I’d talk about quirks in an earlier post, mostly when I mentioned how much I saw myself in My Little Pony: Friendship is Magic’s Starlight Glimmer, Maud and Mudbriar and this is that post…

The thing is, for me, I think in pictures, like Dr. Temple Grandin and a lot of fellow Spectrumites. When I’m driving, if I’m given street names and route markers, I don’t know how I translate that to me unless I get visual markers, landmarks and the like.

Another thing that I do constantly, one thing that people that really know me, which include you, my readers, is that I use game show analogies or lingo in my speech because I’m a huge game show fan (since it’s something I love so much) to get my point across, much like Maud and Mudbriar’s expertise on rocks and stocks, respectively.

Some examples of this is that I’ll say “it’s in that range” or words to that effect if I’m trying to explain how much something is, or on the road if I’m trying to explain where a place is, or “and circle (or X) gets the square” to say that someone’s right, or I’ll tell someone to “earn it yourself” when it comes to doing something that person needs to earn; “Daily Double” for things I think will work, or other things of that nature. I know it sounds silly, but it works for me, getting my point across in a way that both suit me and make my feelings known.

Another example of this influence comes in the games I use for The ARC Mid Hudson’s Literacy Program, I give it a test run (usually on my older brother) just to see if there are any kinks I need to work on. I’m like the late Mark Goodson on that front, I like to make sure things are perfect before showing it to those I work with. All during the test run, I’ll ask my older brother if he gets it, if he understood what I’m trying to do and he says that he does.

However, what would happen if that wasn’t the case? What if I needed to translate it myself?

I’ll admit that can feel awkward to act as translator for my own lingo, mostly because I don’t want anything to get lost in translation, I’ve seen what one misunderstanding can do to one person’s life and it’s not pretty, to say the very least. That time will come, sooner or later, and that awkwardness will be overwhelming at first (and it’s for that reason that I find disclosing helpful, especially at my job) but doing so now maybe a good thing, if for no other reason, it gives a chance for our talents; our strengths and quirks shine through, even in times where our quirks may get in the way.

That being said, don’t be ashamed of the person you are even with what people might consider strange; peculiar and weird. Know that you are enough and you are loved and respected by your friends and family. With compassion, experience and respect, you can be the most authentic you that can be, letting yourself truly….

Shine On!!

 

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Poetry Packed Out: It’s All Right To Do Your Best

To my fellow Spectrumites, one of the things I notice we daily do is compare ourselves to others, in everything we do and whom we are, as I tend to do. Recently, after I sheepishly tried to dance as good as others, a friend of mine told me that my impromptu performance was good enough, after I compared myself to a fellow friend, who is an amazing dancer in his own right.

The thing is, even though he was right, I felt that I feel into the social trap I mentioned earlier. But I want to stress this to fellow Spectrumites: You are enough, You matter, you mean so much to so many! I know that saying this makes seem like a Pollyanna, but I like to be optimistic as a general rule, especially since depression can make bad feelings even worse.

Another thing I need to stress about this is that it’s totally all right to be yourself, quirks and all, (which I’ll discuss in a later blog post) but it’s ok to be weird if that makes you happy in your life. That’s where this latest edition of “Poetry Packed Out” comes into play.

When I wrote this poem, called I Try, I was in a place in my life where I was trying to sort out if there was something wrong with me, both socially as well as emotionally. It was a long and trying process with progress and healing coming to me like molasses. It can be hard to fit in the Neurotypical world, but with support, understanding and two way communication, it can be done, but there is doubt in our minds. My response to that doubt is my latest poem:

To Try

I try 

to love

though some call it 

impossible.

I try 

to live 

although I may seem 

trapped.

I try

to fight

even though I know 

I’m outnumbered.

I try

not to cry

even though sad news

can be humbling.

I try

to resist

the negative things

that critics will say. 

 

I try

to stand proud

even though hubris 

cuts me down. 

 

I try

to smile

though bad news

causes me to frown.

I try 

to scream

though I know 

I should be silent. 

 

I try 

to be normal

even though I know

I’m not.

Through life thus far

I’ve tried

to be better; 

to honor those whose memory I cherish; 

to hide the secrets

I know that people will discover.

To make 

sense of 

life, love, 

and those that drives us. 

I’ve tried to wonder 

what I’ve gained from it all; 

to sort out

the aftermath. 

 

I may not succeed 

but still 

I try.

No matter what your circumstances, dear Spectrumite, please know that you are enough and that you matter to those that care about you. Just please don’t give up and don’t be afraid to be yourself and, as always…

Shine On!!!

Throwback Thursday: The Pencils of Life..

“My Pencils outlast their erasures.” -Vlad Nobokov

Fairly recently, I’ve discovered that, despite the happy-go-lucky personality I showcase to the world, I’m damaged goods. There are times where, like Jean Luc Picard, I’m found myself thinking of my own mortality and thinking of those timeless questions philosophers greater than I have wrestled with, all to little avail.  I know that I’ve mentioned “masking” before on my blog before, but now I feel the need to tell my own story.

It happened when I was first diagnosed, when I was very young. Through ABA or applied behavior analysis, I was taught that conforming was the “norm” that I needed to emulate, to suppress my stimming habits and attempt to be “normal.” It vividly reminds me of an episode of Spongebob Squarepants where Spongebob tries to be “normal” to Squidward’s irritation, ironically since it was his idea in the first place.

I’ve often wondered recently why I can’t act goofy and silly at times, like my NT friends (and even some fellow Spectrumites.”It makes me really appreciate my friend and fellow author Jesse, who despite his status as a published author, can be silly and funny when he wants to. As a result, a reoccuring habit that I have is saying sorry for even the smallest thing, even when it’s nothing major; when it wasn’t my fault.

It’s something I wish I could change, honestly…

Recent talks with my parents make me feel that-given the results, which include improved manners, improved social ability and my ability to mask in the world- they don’t regret the decision at all, even as they do see my social awkwardness at family gatherings, a challenge that I’m still trying to overcome.

That said, I think it’s important to put this note in: I grew up in the 1980s, where Nintendo would make its mark on gamers as it still does today, where Apple was just starting out to grow its massive empire, where the luxuries of technology and information were not so widespread as they are now.

In light of this, I’ve made a decision..to forgive my abusers. They didn’t know what would happen or how good I would turn out.

I can’t even imagine what I’d do in their shoes, under the pressure of cold stares; whispers and decisions from people who (quite honestly) didn’t understand what it’s like to be a young Spectrumite who doesn’t know any better. My parents were trying to find answers, to find relief; to not “cure” me but only to understand and to help me….

Shine on as only I (and we by extension) can!!

Throwback Thursday: #TaketheMaskoff

I know I mentioned the weight of my mask before, but I think it’s time for us to consider the positives of being on the Spectrum.

But first, thanks to Blogging Astrid, whose post about masking is: https://bloggingastrid.com/2018/07/23/takethemaskoff-what-is-masking, perhaps she could explain what masking means to the Spectrumite community better than I could, simply put:

Masking…is pretending to be something you’re not. This can be done either consciously or uncnsciously. Many autistic adults have learned to mask so well it’s almost second nature. We’re also encouraged to mask on a daily basis when people judge us about being autistic. Then when we mask successfully, we’re told we don’t look autistic.

Masking may seem natural to NTs, or neurotypicals, but they don’t really understand what a challenge it is for us to be “on stage” every day. It can be challenging enough to mask, without having to guess social cues that can vary from time to time, which leads us to script our responses meticulously, as the blogger describes further:

For example, I’m often told that I don’t appear autistic. After all, when I hold a conversation, I appear pretty “normal”. I am told I can hold down a reciprocal conversation that doesn’t sound stereotyped or like I’m scripting. I ask people about their interests, for example. Now that it’s been extremely hot here for a few weeks already, I have even mastered some smalltalk about the weather.

This obviously (to me) does not mean I’m not autistic. Autism, despite what many people think, is not about social niceties. Autism is not the same as a lack of interest in others. Besides, I have 32 years of experience being told how selfish I am for not appearing to show an interest in others. So instead of showing a genuine interest in the people and topics I’m genuinely interested in, I learned to appear to be interested in whatever and whoever I am supposed to be interested in. In other words, I learned to mask my autistic curiosity.

Speaking for myself, I like to be around people who understand my autism for what it is, a different way of thinking; those people whom see me as I am, autism and all. Disclosing to friends and co-workers is first and foremost to me, mostly because I want people to understand my quirks, my difficulties and my strengths, if for no other reason, to help me be myself, really myself and allow me to take my mask off,

To do so, I’ve had to look deep inside myself and find my positive traits (as do we all) and it’s easy to discount whom we are in the face of the neurotypical society we see, but if nothing else, know that you are strong, you are smart and you are enough. Don’t be afraid to be yourself and dare to take your mask off and let your true self…..

Shine On!!

A Case of Self Care…

Today is the first day in a while that I can really relax and really decompress from socializing with people. Not that I mind it, but there’s the saying that too much of a good thing isn’t a good thing, right? Well, yesterday was that kind of day, socializing without a chance to breathe and be myself.

This brings in something that I feel the need to cover on the Superblog: a matter a doing Self Care. How I interpret self care is doing things that make you happy, doings things that you enjoy, going places you like going to, in other words, it’s all about you!

The thing is: knowing when you need to do self care is easy, but it can also be hard (at least for me) to make and reinforce boundaries. It’s ever harder to do so when the Bartenders Conundrum is enacted, when people know I’ll listen to them. It can be exhausting at times, which requires me to use my self care option. It literally can mean the difference between relaxing and being overwhelmed. It’s for that reason I like to hang out in my apartment on my mornings off, sleep in when I need to, have a nice cup of coffee, all while I think of places to see on my days off, so I can make the most of recharging my batteries (figuratively speaking, of course.)

There are other things you can do during your self care regiment, all taken from article from the Mighty written by Talhia V and entitled “6 Self-Care Tips for People on the Autism Spectrum (the link is posted here, for your information: https://themighty.com/2018/09/self-care-autism-spectrum/) but I’ll add thier words along with my own commentary and how it affects me, since it might help you as well.

Just a disclamer, though, what works for me might not work for everyone so what I write about this is what i’ve discovered and what works for me, it may not be how others promote self care, so take thier words and use them in any way you see fit, because it’s your life after all, and this is all about you.

So without further ado:

1) Think about or write down something positive about yourself every day.

“A few weeks ago I’ve started to think about something that I’m good at and/or something that is good about me every day, and I’ve noticed a improvement in how I see myself.”

Admittingly, this is something I need to do for myself, mostly because it’s so very easy to feel like everything about you is wrong, a case that NT’s make, like “This is our world, you’re just living in it.”

More like existing at times.

We need to feel like we are worthy of being noticed, rather than tolerated and the only way to do that is to uplift ourselves; make ourselves feel like we are good enough. But more on that a little later.

 

2) Give yourself some time alone.

I like time to myself as constantly socializing and talking is exhausting. Despite the seemingly constant pressure to “be social,” you are allowed to be alone and enjoy your company, for example once you get home from work. Give yourself time to read a book, look up videos of whatever you enjoy, listen to music, enjoy the silence, take a nice warm bath or whatever you like to do. You’ll find you might feel refreshed and relaxed afterwards, ready to continue on with things.

This is something I do daily, in order to recharge my own batteries and I agree that, unlike our NT friends, socializing can be exhausting, especially if you need to go off your script. It’s ok to feel like your “off the clock” so to speak, as soon as you get home and reward yourself in your own way.

3) Engage the senses.

Some of us on the spectrum find particular textures/senses rather pleasant such as feathers (touch), a lavender candle (smell) or the sound of the wind whistling through the trees. Allow yourself to experience whatever your senses desire! When I do this I feel calm, soothed and content, especially if I do it during times of distress.

In a world that immerses us in all kinds of things, it can be the right sound, the right smell, the right taste and textures that can help us in our self care regiment, myself, I find myself sniffing candles at my job because it helps me relax, or cooking when I’m at home, I can’t say why it helps me, but it does.

4) Practice what interests you.

It also helps me as I’m doing what interests me and getting pleasure out of it. Take the time to do whatever you like to do, be it building model planes, reading about the planet, building and putting together a computer, learning history or whatever you enjoy!

Speaking on immersing yourself in what you love, what your passion is, it helps you calm your minds to be totally focused on it, let it shine in your own way and on your time. Maybe something will happen during your day that you can use in your passion, let it help you during your downtime.

5) Allow yourself to feel how you feel.

If you’ve had some people say or do some unpleasant things towards you, try to allow yourself to feel those feelings as bottling them up can do more harm then good.

This one has always been a tough one for me, especially since i’m so used to bottling up my emotions and never give myself a chance to actually feel them, so much so that it’s messed up my self esteem and self confidence. Mostly, it’s the acting on those emotions that seem the scary of the two, but it really should be done, maybe asking those people you trust to help you talk through them.

6) Realize how good you are.

This one is hard at times as I hear the bad things about me and my autism a fair bit. But recently I’ve been focusing on my strengths — sometimes easier said than done, I’ll admit!

Maybe try it for yourself? You could be a brilliant talker, someone who has a brilliant sharp memory or anything! This takes practice, but hopefully you’ll see the benefits for yourself. You are a good person!

Remember when I said we’d deal with uplifting ourselves earlier, well, this ties into the end and, to be honest, this is another hard one for me, because of my messed up self esteem and self confidence. I’ve believed more of the bad of my autism then good sometimes, even if it seems small to NTs, it could feel like my day is ruined because of one small thing. Not only do we need to uplift ourselves to feel that we are equal to NTs, but we need our voices and our concerns to be respected and valued, but that starts at the top, with us.

So, let’s start with right now, today, tomorrow and let’s let our uniqueness be heard and valued as much (if not better) than we are so we all can make a difference in our communities and really….

Shine On!!!

A Garden Party with the Piano Man!!

Well, last Thursday, I was finally able to check something off my bucket list, something I had been wanting to do for a long time: See my musical mentor, the legendary Billy Joel perform at Madison Square Garden!!

Keep in mind, I’ve been to the Garden before, mostly seeing wrestling shows (SummerSlam 1998, Royal Rumble 2000 and the Monday Night Raw where “Stone Cold” Steve Austin first stunned Mr. McMahon in 1997, to name a few) but this was my first time seeing Billy Joel in his home arena. It was a dream come true, one which might not have come true if not for a wonderful friend of mine, Jason Cohen, which I want to thank immensely for this opportunity.

But I’m getting ahead of myself, maybe I should explain why I was feeling euphoric. As a Billy Joel fan, his music is so appealing, so varied, so relatable that it’s hard not to be a fan of his work. When I moved from my parents house to my current home, I used “Movin’ Out (Anthony’s Song)” to clue people in what was going on in my life. When I feel depressed in my life, “You’re only Human (Second Wind) is my go-to song as well as a personal favorite of mine. “All for Leyna”, “The Stranger”, “For the Longest Time” are all known because of how relatable they are in countless lives, to say nothing of his trademark “Piano Man.”

The point in bringing this up is to give an understanding of how deep my knowledge of Billy Joel’s song portfolio, which made last Thursday’s trip to Madison Square Garden so special to me. This event was made even more special by the fact that our seats were totally different than we expected, which was an unexpected surprise for both of us.

The atmosphere of the concert was nothing short of electric (how could it not, it’s Billy Joel) and it was so easy to get swept up in the electricity, if you’ve been to any big sports events with home teams, you know what I mean.)

I had been to an Air Supply concert before but I only knew a few songs, but this was one where I knew most of the songs, playing them many a time before then. Hearing those songs live was an experience unlike any other, but singing with people, with fellow fans, that was a euphoric feeling, it made you feel like you weren’t alone in liking Billy Joel. The set list I have posted should show fans and newcomers alike the talent we all witnessed at the Garden: https://www.setlist.fm/setlist/billy-joel/2019/madison-square-garden-new-york-ny-1b9e9180.html

May we all have friends like Jason and others that will help us make our dreams come true so we can all..

Shine On!!!

Throwback Thursday: Poetic, Melodic Master Returns…

(Writer’s Note: By the time this gets to my readers, I’ll be well on the way to seeing a concert featuring the Mastro of Music, so needless to say, I’m excited about this, my first concert with him. With this occasion happening, I felt it only apropos to use this blog post to celebrate, but it also mentions April 2018’s Walk for Autism, my last with the organization I was with. Long story…

That said, please enjoy this post and, as always…

Shine On!!) 

 

Greetings from the Spectrum Side!!

I know it’s been a while since I’ve posted, but I’ve been really busy with the recently completed Walk for Autism that was just in the area, I won’t tell you all what role I played in this particular Walk, but I will soon; it was a great event nevertheless, I feel like it’s my way of leading by example and shining on from the inside out.

But I digress…

This edition of Packed Out Poetry is for a dear friend of mine, a fellow Spectrumite whom I met 10 years ago (give or take) and over the years, he showed me that being a Spectrumite is always a good thing even when neurotypicals don’t understand us.

Over the years, he also invited me to his 40th Birthday Party as well as accompanied me to our friend Jesse’s Birthday Party Over time, we’ve bonded over such things as The Simpsons, Big Bang Theory, the movie What about Bob? Another thing we’ve bonded over is our shared admiration of Billy Joel, commonly known as the Piano Man. It’s because of that bond and his friendship that I present this poem for my friend and our musical icon:

Maestro of Music

 

-to Billy Joel from a longtime fan-

 

Long Island

laments of Brenda and Eddie

Manhattan musings from Dodger.

Blues from Billy the Kid,

both the major,

minor keys;

highlights from the Hudson Line

got a lonely listener

through many a busy night

both the good and bad.

 

Those songs;

your creations

speak of love,

war,

life in general,

getting your Second Wind

during life constant letdowns,

like saying

Goodnight

to an angel;

to someone taking their last breath.

 

To my musical idol as well as my friend, this blog is just my way of saying thank you for inspiring me, for being there for me and helping me (and others like us) find a way to…

Shine On!!!

The Big “I”: A Question of Identity

There’s been as to what it’s OK to say to someone who recently discovered that they were  on the Spectrum, the debate rages on to this very day: is it person with autism or autistic person? It’s for that reason that I made up my own version of the label: A Spectrumite, I chose this because it felt like a great way to walk the tightrope between the two, but still the question persisted, was my answer really good enough?

It’s all really a debate of personal preference: do you put the person first or the disability? But why debate it, especially since disability history is something that, even with its flaws, our bad moments, we can stilll feel proud about. Our choices about our lives are things that we make ourselves, but that’s not to say that they haven’t been made before. Our collective history alone speaks of that with such people like Helen Keller, Bernard Carabello, Jim Sinclair, John Elder Robison, Dr. Temple Grandin (my personal hero), Jesse Saperstein and I. King Jordan. Just those names alone should give us something to be proud of, no matter what label we choose.

But, that being said, it still didn’t answer the question of whom WE are?

For my personal purposes, I like to look at myself as an autistic person, why? Well, the easy answer is that it makes sense to me, especially considering the memories of Willowbrook (never been there, Thank God!) It’s easier for me to identify as such because diagnoses for autistic people are on the rise, they need to be encouraged, inspired and celebrated for the people they are deep inside, they need someone to relate to, someone whom sees the world as they do (or perhaps not?) We all need role models, we need each other united as one tribe. Then, only then, in my eyes, can we really contribute to society, change stereotypes and truly…

 

Shine On!!

Poetry Packed Out: Making Sense out of Madness

Let’s face facts, readers, life is a wild, wild ride. It’s a ride full of twists, turns, unexpected accidents, rough roads and sunny skies, as I mentioned in my last post. It can feel crazy, zany and unpredictable, where nothing is really certain. Just when people think that they know all the answers, as the late “Rowdy” Roddy Piper would say, life changes the questions.

Life can be difficult, dealing with multiple emotions, ones like joy, sorrow, anger, envy and every emotion in between. It’s hard to suppress what one really feels, not wanting to rock the boat too much, wanting discontent over conflict. Such times are not possible, especially in our culture, one where our world is full of despair, greed and sadness.

That said, it’s how one deals with them that determines the person they want to be. It’s all about circumstances and consequences in the long run. I know that it may sound simple, but finding that balance can be a bit of a challenge, or juggle, as my latest cinquain describes.

Juggle

 

Juggle

Works, struggles

In life, work, play

To do many things at once to keep

Balance.

To those who feel overwhelmed by what life gives them, just know that you are not alone, it may feel that way, but you aren’t alone.

You matter, your life matters, your impact matters, no matter how small you might think it is. That said, there is a need for balance, helping others as you help yourself, it won’t be easy to find, but when you do, I assure you that the journey will be worth it. So, don’t give up on yourself or anyone else, but find the balance within yourself and you’ll always…

Shine On!!

Throwback Thursday: Purging the Urge (Again)

There’s always reason to doubt, to stop believing that what you’re doing is right; just, that what you believe in means something. There’ll always be people, critics that say that your efforts won’t matter, that resistance is futile and that change won’t come. Be it fear, concern or worry, there’ll always be a reason to doubt.

But there’s also a reason to hope..

My dad said during one of our many conversations over the years that there was one thing that stuck in his head that my grandfather always told him about being happy for what you have, I consider it a jem of a saying (fitting since both came from Limerick, Ireland, but I’ll have more to say on that next month) and something that I find wise. He always said that “I always thought I was bad off not having shoes, until I saw the man that had no feet.”

Wow, that is profound, especially in our culture where getting the most or being the best goes over being happy for your blessings, for your light, for your hope.

That’s not to say that it’s easy to do in real life, life is a constant struggle, a battle between good and evil, hope and despair, but it’s in these times where faith can help to deal with the demons in your life. in order to purge the urge to doubt yourself, which I’m pretty sure, Spectrumite or not, have a tendency to do.

So, let’s make Purge the Urge our mantra for change, for changing our habits, our quirks, our hopes for the future and make doubt, hopelessness and despair a thing of the past. Let me be clear on this: I’m not writing this to preach, but to encourage each other (especially on Valentine’s Day, not exactly the best day for single people) to keep up our faith, our light in the light of our darkest times, so that we can all..

Shine On!!