Friday, January 24, 2014

525,600 Minutes.

I know I'm a little late with this but, it's January. The year 2014. Happy New Year. I feel like I skipped right over the "changing of the year", and I guess I did. It feels weird because it's supposed to be a big deal or something, but I guess it's not really a big deal at all. What is a big deal is that a whole year has passed in what feels like a blink of an eye. How does that happen?

It was a year ago, almost exactly, that I brought up the subject of Jack and Aspergers, (for the third time in his life). It was a year ago that I set out to read everything I could get my hands on to educate myself on the condition. To date I've read at least 20 books, countless blogs,  watched movies, documentaries, TED talks, and set up camp at YouTube. I even branched off, learning more about Introverts, gifted children, and the HSP.  I'd say I covered my bases.  And it was nearly a year ago that I stumbled upon what seemed like a tribe of women who's experiences and difficulties were mirror images of my own. Many of whom had children with Asperger Syndrome and later received the diagnosis themselves. This discovery sent me off on another quest for information and I suppose you could say it became a special interest. 

It's been a long, and mostly solitary, journey.  A journey that initially started out of worry and fear, but eventually evolved into a journey of self discovery, self-acceptance, and self regulation. The journey is far from over, but I can say with certainty that I no longer feel the same sense of dread that I did a year ago.  I still fear some things, but I'm no longer afraid  for my child.  I'm no longer afraid that he may have Aspergers. I've gained a much better understanding of him and myself, and while I know that he will struggle, I know that he will be okay too. I haven't said too much here about Jack's father, but if I had any money at all I would wager it all that he, himself, is also an Aspie. I have no doubts. In fact, I believe that was what initially attracted me to him in the first place. I had an overwhelming feeling that I had  "found my people." Even years before we got together, I remember his then girlfriend telling me, "he's just like you. he's like the male version of you". And it was true in many ways. Not all, but many. It wasn't enough, obviously, to sustain a relationship, but even now, I know he "gets it", when so many other people don't. In spite of all of this knowing, none of us has received a formal diagnosis at this point. My doctor, through my own therapy and the information I've shared about Jack, has taken to referring to us as neurodiverse.  (You can read John Elder Robinson's take on Neurodiversity here.) That's as formal as we've gotten, and so long as there are no major problems or services needed, that may be as formal as we get. Time will tell. I've gotten more comfortable with ignoring the "early diagnosis is crucial" cries from the Medical Profession. Throughout this process I've found more helpful advice from Autistic individuals themselves than I did from any Medical Professional that does not have Autism. And lets face it, it's too late for an early diagnosis. It's too late for the no eye contact, flappy, toe walking diagnosis. That stuff doesn't happen anymore. Not often anyway so they would never be able to see it. 

So where do we go from here? I don't know. I guess we keep learning, keep discovering, keep accepting and most importantly we keep self regulating. We treat the comorbid symptoms. Primarily the anxiety, OCD tendencies, and rigid thinking. While I'm still having some difficulty with all of those things, my son, is learning quickly, but then again, he's not an Old Dog like me.  

I feel good about where he is today versus where he was a year ago. I find it funny sometimes when someone makes a comment about his behavior, like..."is that healthy for him to spend so much time doing that?"  I know it's usually out of concern, but what's funny is it's always from the same people that don't really accept Aspergers as the reasoning behind it. It reminds me of when I was a child and I would hear... there's nothing wrong with her...along with the conflicting...that's not normal. People are funny. And sometimes infuriating. 

So, a year after this blog post , what is Jack like today?


Is obsessed with LEGO'S and is determined to become a Lego Designer.

Is more adventurous with trying new foods, but will latch onto a certain food for weeks. Occasionally he will drop a food from his diet and not want it again. Ever.

I don't see much toe walking but have noticed the flapping returns sometimes. 

Still a nail peeler, but has started using a stress ball, especially when angry.

Still constantly singing and humming movie theme songs or T.V. jingles or making sound effects. Constantly. Did I mention it was Constantly? He also nails the tune.

When he draws it's not just one picture...he goes through 10 or more pages making one after the other. He also draws with detail and perspective.

Still prefers video games and electronics and Lego's to playing outside or with other people. At nine he still does not know how to ride a bike and has no interest in learning.

If he's not playing a video game he has Lego's in hands (constantly) making sound effects. 

Doesn't like to have to go anywhere. Would rather stay home. Doesn't like his routine interrupted, but can sometimes deal with it without tears.

Rarely has to be disciplined. Once he knows the rules he sticks to them and would like for everyone else to as well.

Is heartbroken if he does happen to do something wrong.

Has minimal anxiety about going to school. Usually only on Mondays or after a vacation. (routine interuptus) The rest of the week, though, he dives into his routine and has been all smiles. He sets his alarm for 5:30am so he does not have to rush and has time to play in the morning. He has also become a multi-tasker by using his bus ride to do homework. These are things he's initiated on his own with no help from me.

He still would like things to be perfect but, is more accepting of making mistakes than he ever was. Only breaks down occasionally.

Seems to have a lot of empathy/sympathy and cries easily over real or imaginary sadness

Has developed an obsession with watching YouTube videos. Mostly of other people playing video games. He will also watch Sponge Bob in Spanish.

Is very honest! Loves animals.

Quotes lines from movies or shows while playing.

Has taken to info-dumping, which basically means, when allowed, he will talk non-stop to me about a favorite subject, video game, Lego's or a world in his head. He could do this for an hour straight if I don't stop him.

Can be very literal and often looks to me for clarification. (was he joking?) He has learned to DO some sarcasm, but still doesn't know what it is. :)

Has started requiring alone time.

Has strabismus...little to no depth perception and is color blind.

Expresses his love for his immediate family often and easily.

Enjoys other children, laughs, is silly, but will often just watch them play and only engage in his own personal interests. Needs down time after playing with other kids for long periods of time. He's also starting to collect, and become more possessive with his "things."

Doesn't like sports. Doesn't want to be blamed for doing something wrong. Is only competitive against himself.

Will now only wear comfy pants. No jeans. No buttons. No zippers. Would stay in PJ's forever. :)

And there you have it. There is a lot that hasn't changed and some new behaviors that might be considered obsessive, especially by people with no attention span...but...and this is the most important part...if you read the previous list from last year, the changes that have occurred are all positive. Reduced Anxiety. Self-discovery. Self-acceptance. Self-regulation. 

Diagnosis or not, it's working. 

Hope, who would have appreciated more support when she started this journey, but knows now that she really didn't need it. Trust your instincts.

Monday, January 20, 2014


i'm sure it's just winter
the short days
the bitter cold
the dry air
the color gray

i'm sure it's just the extended darkness
the snow, the rain
the missing sunshine
fucking with my brain

i'm sure it's just lack of movement
the constant sitting
the extra weight

i'm sure it just the processed foods
the carbs
the wheat
the sugar
in the cake

i'm sure if i could just go somewhere
if i could just get somewhere
and lighter

i'm sure if i could swim
or feel a breeze
or walk in the heat
and hear the leaves

i'm sure if i just had a nice salad
and some fresh fruit
and maybe some herbal tea

i'm sure that's all it is
the darkness
the fog
the depleted energy

i'm sure this lack of focus
and lack of will
is only temporary

i'm sure i could change it
if i could just get up
if i could just stand
and go in the other room
and do...
if i could just
think something
look forward to something
feel something

if i could
i'm sure it would be fine
if i could
i'd speed up time

but i'm sure it's just winter

Wednesday, January 15, 2014

Peace. Of Mind.

I remember a fight my parents had years ago. I was in High School. My Mom had gone out the night before to some social event for work, and didn't come home. Well, she did come home eventually, just not at an hour one would have expected. My Mom was having an affair. I mostly knew this because I had figured it out. Not that it was difficult. If you listened to only half of what she said, it was still hard to miss each time she mentioned a man she worked with. A man she had  nicknamed "Cutie".  My father obviously didn't listen to half of what she said, because I don't believe he knew. At least, not until that fight. I remember them screaming at each other and my mothers ridiculous cries of "I don't remember. I don't remember where I was. What do you want from me?"  And I remember my father saying the same phrase over and over again. "Piece of mind. I want a little Piece of mind."

At the time I really didn't know what the hell he was talking about.  What does that even mean? Why does he want a piece of mind? And who's mind? Hers? Cuties? I was utterly confused and just wished he would stop saying it. But he didn't. He said it over and over again.

Fast forward twenty something years later, to a woman with a much firmer grasp of idioms and sayings. I get it now. Peace of mind. That's what my father wanted. He wanted that thing. That thing that I've never ever had.

Peace of Mind: Fig. a tranquility that results from not having worries, guilt, or problems.

By that particular definition, I find it hard to believe that such a thing even exists, but I suppose it does in short doses for some people. I, myself, haven't really experienced it. People like me normally require some sort of drug or substance to induce such a tranquil state. Prescription drugs can do it. Sort of. I would imagine Heroine gives Peace of Mind as well. I wouldn't know. But the kind of Peace of Mind my father was looking for, didn't require drugs. I know this because I've been searching it for it my whole life. The kind of Peace of Mind he was looking for required only the truth. Truth, can also bring about Peace. Of mind.

While my literal teenage brain may have been a little confused back on that faithful day, my adult brain now knows exactly what he was asking for. I also know exactly how he was feeling. Empathy? Perhaps. Sometimes I feel like my entire life has been a series of "Who's Lying to Me Now.". While each episode changes scenes and brings in different characters, the theme remains the same.

I wonder if being lied to bothers other people in the way it does me. I wonder if it changes them somehow. Twisting and bending them in ways they never thought possible, until they reach a point where they can no longer recognize their own reflection. I wonder. The characters in my life who do the lying always throw out the same phrases like..."it's no big deal." and "you're over reacting."  They've all done it. Each and every one.  But I also know that just because they say that, doesn't make it true. Because, after all, they're the Liars, aren't they.

Hope, who's mind will forever be searching for it's piece. Peace.

Thursday, January 2, 2014

99 Problems...#3...Social Interaction

After the Holiday madness festivities, I felt this was a fitting third problem. I know there has been a rather long gap, but rest assured, I have not run out of problems. I'm pretty sure I never will. 

This particular problem has been life long for me. If you're at all introverted you probably have it as well. It's not that I don't like social interaction per se. Sometimes I really do.  Sometimes I even look forward to it. Sometimes I even *gasp* enjoy it!  But I have rules. Not rules that are written out on a blackboard for all the world to see, but internal rules that I have to live by to maintain a psychological, emotional, and physical balance. If the rules are broken, I am broken as well. There is no "getting used to it". There is no adapting. There is no learning to like it, and certainly no "going with the flow". I've tried. Believe me, I. Have. Tried. But even as far back as I can remember, I had rules. I may not have known why back then. I may not have realized that in following them I was maintaining a balance, but I was. It was almost instinctual. A survival mechanism. It's only during the last year or so of connecting the dots, that I was able to...connect the dots. I am now fully aware of why I need this structure and I'm also fully aware of what happens when I don't get it. 

So, what are my rules of social interaction?

First and foremost, it has to be a PLAN. I have to know in advance that it is coming and I have to ready myself for it. I have to prepare, maybe even rehearse. I have to run scenarios through my head and figure out the solutions to said scenarios IN ADVANCE, just in case, you know, they happen. Spur of the moment, last minute social interaction is one of the most anxiety inducing experiences of my life. I don't like it. I don't see that changing. Randomly running into people is a nightmare. If I see you, but you don't see me, I'm going to duck down that other aisle and hide.

Second, I have to STICK to the PLAN. Change is bad. Change is bad. Change is bad. Can I rationalize the fact that Change isn't really all bad? Sure. Can I make myself believe it down to my core? No. I can not. For me, even changes need to be PLANNED, prepared for, rehearsed. This is why I can and have made some rather BIG changes in my life. Changes that left people shaking their heads in disbelief. But I planned for it. Probably for years. And I controlled it. So...yeah. If there is a plan, lets just go on and follow through with it, shall we?

Third, I have to space it out. Too much in a short period of time will cause me to feel overwhelmed, emotionally melt down, and leave me unable to even identify my own feelings. Instead of being able to step back and say, I'm overwhelmed, I'm tired, I'm confused...I end up with only one dominant thought/feeling/emotion, or whatever it is, and that is..."I  hate everyone." I don't have an answer to why this happens and why that is my default, but it is and well, that just turns me into a Bitch. Space it out. No two days in a row. This also applied to the younger bar hopping years. 

Fourth, I need my recovery time, or "breaks". While spacing out the social interaction, the time in between has to be what I consider recharging. For me, that means a quiet external world and a good amount of alone time. This, I've come to realize, is one of the MOST important things I need in my life. Even if the "social interaction" only involves an hour visit with a friend. I'm still working on fitting this step into my life and not feeling bad about it. For years I would omit it because it felt selfish, or other people would say it's "unhealthy" to spend too much time alone. It felt like wanting it or needing it was somehow wrong. Like I was somehow wrong. Then I had a child and well, we all know how much alone time that allows for. But now, finally, I'm ready to take it back on the premise that EVERYONE, no just myself, will benefit from it. If I'm balanced, trust me, I will be so much more pleasant to be around. 

And there you have it. A complete over analyzing of One simple problem. There is also a fifth unofficial rule, but listing it would make me feel like an alcoholic....

Needless to say, our recent Holiday craziness left little room for all the rules in my head. I tried to keep a balance and I did make my own plans that included parties and recovery time. But last minute changes and a last minute party threw me into a panic. I'm still not over it.  Basically I just had to get through it, which sucks because I really wanted to be able to enjoy it. I'm on my way back to balance now. I'll be getting back my alone time next week, but seriously sometimes it gets bad. I don't think the average person would understand exactly how bad. If I get too overwhelmed and too knocked off my axis I start questioning everything. I question the existence of other people in my life. I question whether its worth it. I'm sure that seems extreme to anyone that doesn't live in my head, but again, it's a survival mechanism. It just kicks in when needed. 

I'm not sure if there is a solution to this problem, but I do think I can manage it in a way that keeps me balanced and keeps the people in my life out of the line of fire. It will, however, involve me saying no, when I know beyond a shadow of a doubt that whatever it is too much. It's a new year. It's worth a try.

Hope, who wishes you all, all the wishes you wish. Have a happy 2014, or at the very least a manageable one.