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?

Jack...

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.

. 

Hoarding and Possibly the Start of Something.

First off, a little confession.  I'm a paper hoarder. I admit it. As much as I need order in my home to have order in my brain, and as much as I hate clutter and knick knacks, I am a complete and total paper hoarder, and have been since I was a child. I still have every poem/story I ever wrote and every drawing and art project from my childhood. I have scrap pieces of paper that contain nothing more than thoughts or ideas or book titles. Once I had my son the obsession extended on to his paper as well. I notice it most at this time of year. School is about to end for the summer and I'm staring at that pile of school papers sitting in his basket in the corner wondering what to do with them all. I start off with very good intentions. I'll only save the best. The cutest. The most sentimental. Somewhere during the sorting process I realize I can't get rid of any of it. None. Just. Can't. Do it. Usually what I do is pack them up in a box and label it something like..."Jack, 3rd Grade."...and off to a closet or basement it goes. Not sure why this is, but I'm pretty sure it's not going to change, and my son now has developed an attachment to his papers as well. We just love 'em. Confession complete.

Moving on...my second therapy session is complete. I feel slightly more optimistic this week than I did last week, and have some thought exercises to keep my brain busy and a recommended book to read. Mostly, though, I'm relieved because the hard part is over. Or what I consider the hard part. The messy, complicated, dark and dreary, dreaded past.  I'm sure it will be revisited, but the overview is over. Where I fit in my family and where I came from and how it all is now. It's a series of bumpy and winding roads in my brain. Roads with no stop signs. They just go on and on and on, one running right into the next. For me it's hard to explain. Even harder when I see the looks after each messy fact and detail. I usually just want to stop, but I didn't. I kept it pretty factual and brief so he could at least get a visual map of the maze that has been my life. For the most part, I think I did pretty well, only I laughed through the whole thing. I tried not to, and I wasn't laughing because I thought it was funny. Maybe it's just nervous laughter. Maybe it's "I know how ridiculous this all sounds' laughter. Or maybe it's that cross wiring thing I mentioned before. If he noticed, and I'm sure he did, he said nothing. Thank god.

Perhaps because my thoughts are so visual, I feel as though this whole therapy thing is a painting. Today we got the background filled in with muted colors and  quick broad strokes.  Next we get to work on the important parts. The details. The fine points.  All of the things that are up front and in focus. Sort of. In any case, it feels kind of good.

During my brief and factual outline of the "Life of Hope", he was able to pick up on my inability to connect with people. Most people. Not a huge eye opener for me, of course, because I kind of already knew that.  But the fact that he was able to get it from the words I was saying gave me a little boost of...something...faith, maybe?  Belief?  Belief that maybe someone can see me, after all.  I wanted to say..."yes, that's it exactly! A connection hardly ever happens, so on the rare occasion that it does, I don't want anything to change. I don't want to lose it!"  I didn't say that though. I did say that my inability to connect somehow extends to my own life though. When I talk about my childhood (laughing or not) I feel very little emotion. While I know my past has had an effect on me, when I go over it piece by piece, it's as if I'm describing a movie I once saw. I can tell you about the characters and the scenes and the events, but it's as if it all happened to someone else and I was simply an observer. The emotions only come when I place my own son in the role of the child. When I imagine any of it happening to him, I can then feel just how wrong it all was.

Next on the agenda, is to stop thinking about all of that, and to refocus. Along with manipulating my own thoughts, and reading, I've given myself another project to work on. I'm going to take some time away from everything and everyone else, each day for a week and do something I enjoy. Sounds simple. It won't be. First of all I have to identify what the hell it is I still enjoy. I'm going to start that now.

Hope, who is also going to attempt to slowwwww down. 

The long awaited update. Or me just talking to myself. Again.

Okay. I think I'm back. It's been quite a while since I've updated anything here. Not because I haven't had anything to say. Mostly because I've been busy trying to make a living, and finding the time to spend on things I actually enjoy is challenging at best. I'm going to try tonight, but there are three overly tired and somewhat hyper kids yammering in the background so concentrating won't be an easy feat. 

As you can probably tell, I survived the first visit with the The Head Doctor. My main reason for going is to attempt to get my own anxiety under control, and under control without meds if possible. That is my goal, so to speak, because apparently I have to have one. I'm trying to keep an open mind and remind myself it was just one visit and I can't judge the whole experience by that one visit. He did say a couple of things that I thought may actually be useful. (Is it normal for the doctor to talk more than you do?) For the most part, though, I can't help thinking that this man hasn't experienced what I experience so how the Hell can he possibly help me?  How do I know he doesn't suffer from anxiety?  You could call it a sixth sense...Or you could just listen to him talk, basically repeating the same words and advice you've heard for years from all the non anxiety sufferers in your life. I have a hunch that even though I'm the one looking for help, I still know far more about my own condition that he ever will. Still, I will try. And I will try to be open to the possibly that maybe I'm wrong about that. I will try. I'm not even thinking about mentioning my other suspicions at this point. Part of me feels like if he's legit, and actually listening, he'll figure it out. The other part of me kind of knows that's a long shot. In any case, this is where I am. I'm attempting something I have little faith in. I know I should be going about it with a more positive approach but, well, this is me we're talking about and that rarely happens. 

In other news, I had finally made an appointment for Jack, for a full evaluation. Both myself and his father were all set to go forward with it 100%, and finally find out once and for all what is going on. That was until I printed out the pages and pages of paperwork that needed to be filled out and started reading it. The first part that I wasn't crazy about was that I had to get the school involved. Does doctor patient confidentiality not apply to a Psych Eval?  I'm really uneasy about getting his teacher and school involved in anything until we have a handle on what is going on ourselves. It feels like an invasion of privacy, and yes, I realise how ridiculous that sounds given the fact that I'm writing about it here. Don't care. The next thing that bothered me was, in reading through all the questions, I could tell that this five pertained to my child having ADHD...these five meant my son was BiPolar...these pertained to Schizophrenia...those pertained to Depression and then these last few pertained to Severe Autism. If I were to answer all of those questions honestly (and I was a little annoyed that the way they were worded made it seem like all these children are "problem children") my son would be fine. Better than fine. Nothing to worry about. I saw very little that pertained to anxiety, which is the main symptom we're trying to manage. The questions relating to autism were ridiculous...Does your child line up over 100 items?  What!?  My child has been lining up toys/items for years. Never 100 or more. How many children line up 100 or more items?  What I got from that is they focus primarily on the severe/easy to spot cases. If Jack lines up 5 -20 items, he probably wouldn't fit their criteria. And lastly, after reading through everything and thinking on it for a few more days, I couldn't help but feel a tremendous amount of guilt. Guilt for putting him through something like that when I know in my heart and soul that he doesn't suffer from any of those other diagnoses. So, after all of that, and after talking with his father, we both agreed that we don't want to put him through anything unnecessary, and we're back to square one searching for the right doctor. We both feel the situation is unique in that Jack is NOT a problem child. In fact, he is the exact opposite of a problem child. He's good. Almost too good. You won't readily see the issues unless you know how and where to look. My faith in finding the right person to do that is dwindling, as I continue to read horror story after horror story of other parents ordeals. His father thinks that if we can  find him help with the anxiety the rest will fall into place. I don't think either one of us sees an AS diagnoses as good or bad at this point. I think we both know what we know and mostly just want to make sure he has the tools he needs to manage the areas that will be difficult for him. 

So, that is pretty much what's been going on in my bubble. Not all that's been going on, but I only have so much time, and these old eyes are now starting to see floaters. Until next time...

Hope, who knows she sounds like a complete nut looking for help and not trusting anyone to give it, but...that's the way it is, in this here bubble. 

Early Signs...Lines, Separating, and Sorting

As I've mentioned, one of the early signs of autism spectrum disorder, is a tendency for the child to line things up. Back when this first start happening in my household I really didn't have a clue as to what it could mean. Although my son did seem lost in his own world, it was as if he would snap out of it from time to time and make contact. I guess I told myself he was just really focusing on what he was looking at or doing. When these odd behaviors did present themselves I thought it was cute. After all, this was my son. I thought everything he did was cute.

 I remember when I first learned that this behavior was an early sign of autism. It was like a slideshow in fast forward had been turned on inside my head. I saw image after image after image of what my son had been doing for years. Being somewhat obsessed with taking photographs, I caught a lot of it and figured I would share some here. Incidentally, I never did try to alter or change this behavior. I'm sure I thought something like,  he's  "like me", he likes to organize. In any case, I'm glad that I let Jack be Jack.

When Jack first started his lining, separating and sorting he was still just learning to talk. He couldn't say his Th's and instead they came out as F's. He knew exactly what he doing when he engaged in this type of play.  In his own words, I proudly present...." Making Straight Fingy's"

Pairs stayed together.

Tub toys were always lined up on the edge of the tub.

Lines could be vertical.

And very tall.

Lining up the Easter eggs...

and sorting the Halloween Candy!

Lining up the Kitchen chairs. I was putting away laundry while this happened.

Lining up the cones at Daddy's work.

Sorting and lining up the Lunchables. 

Lining up his socks. 

With his new love of trains, the lines came in the form of a track, which was more "normal."

Only his trains were usually lined up in a row right beside the track, instead of on it.

Pairs of trains.

Pairs of Guitars.

The pine cone city.

Lines in the sand.

Just like with all behavior, if it's done often enough it becomes a part of who the person is. You really have to focus and think (or at least I do) to pick it out. If someone would have asked me, "Does Jack still line things up?" , I would have said. "No, he outgrew that behavior."

Except that these photos were taken fairly recently.

Lines of Lego Guys

I'm sure I have more somewhere. His matchbox cars and trains were always in big lines along the carpet. When he wasn't spinning the wheels. A simple search on Google with the words "Autism line things up" will provide more examples of this type of behavior. It brought back a lot of memories. Most of which are good, because as I said, I was pretty oblivious at first. 

The latest update, is the Anxiety is back, as I said it would be. He's now having what I can only describe as Obsessive OCD type "thoughts". I've decided not to wait until Summer as planned and have put another call in to the doctors office. Their less than than timely response is starting to annoy me though, and I'm probably going to make another call tomorrow to a place that was recommended by a friend. 

As for me, I've heard back from the Specialist, and apparently for adults Diagnostic Assessment is pretty damn costly. Of course it is. Nothing is cheap, or easy. So for now, I'm on the back burner until funds magically appear. 

Hope, who is still knee deep in figuring it all out.

Spring, Moonshine, and Living in a Literal World.

First, I'd just like to say Spring is here. Finally. It's not in full force, but it is here none the less. I spent the morning cleaning out the flower beds and dumping the sticks and leaves and debris that Winter always leaves behind. Considering my green thumb has been virtually non existent for most of my life, I'm pretty damn proud of myself.

Okay, now that that's out of the way...back to business. During all my research over the past few months, I've learned that people with Autism or Asperger's (soon to become one) are just as individual and unique as anyone else, and more often than not you will not be able to tell by just looking at them.

But, having said that, and agreeing with the sentiment "If you've met one Aspie, you've met one Aspie", I have noticed a few key traits that seem to be universal, so to speak. One of those key traits is being Literal. Upholding an exact or primary meaning of a word or words. For example, you're invited to a dinner where everyone is asked to bring a dish. And you bring a dish. Just a dish. I don't think it is always that extreme, but you get the idea. Falling under the catagory of Taking Things Literally is also ... not getting the joke. Or not being able to tell when someone is joking, by missing the clues, like facial expression, tone of voice etc...

My son was always very literal, but given the household he lives in now, and my love of sarcasm, he's learning to get it. Not always, but he's only eight. He's got time. He still struggles with knowing when someone is joking. I, myself, was very literal as a child, but honestly feel that due to my interest in figures of speech, idioms, and word origins, I'm cleaning up in that area. ;)  I do, however, still see the visual or movie in my head every time. For example, if you say "Stop beating a dead horse.", I will instantly get that visual. Kind of gross. I was also always famous for missing the joke. Being a blonde, that won me the title of Ditzy.

Apparently I'm still missing the joke. Being undiagnosed at this time, I can only attribute it to me, being me. Which is fine. Sometimes, being me is awesome. Funny, even. My tendancy to grasp on to ridiculous details, even made me laugh today.

My BF has developed a love of Hillbilly Shows, as I call them. One of those shows being Moonshiners. He will seriously watch them back to back for hours. I even bought him one of those nifty Turn Juice into Wine contraptions to play with for Christmas.  About a month or so ago he say's to me, "Save these gallon water jugs for me to put my Moonshine in when I make it." That's what he said. I think that was all he said. I may have rolled my eyes or something, thinking..."Oh god, here we go." but preceded to save the jugs. Every time I emptied a gallon jug of water I made sure not to throw it in the recycle bin and instead save it for his Moonshine. Save the jugs. Save the jugs. Save the jugs. Detail.

                                                 (Ignore the skull. It's plastic. I swear.)

Today, while I was playing in the dirt and the leaves, he walks out of the garage.

BF: "Are you really saving those Gallon water jugs?" (smirking)

Me: "Yeah. You said you wanted them."

BF: (laughs)

Me: "What's so funny?"

BF: "You were really saving those jugs!"

Me: "You said you wanted them. Why are you laughing??"

BF: "I'm not really going to make Moonshine. I was just kidding. You thought I was really going to make Moonshine!" (laughing)

Me: "No you weren't! You were kidding?? Really? You said you wanted them. I've been saving them because I really thought you wanted them!"

BF: "It's okay, it's funny."

Me: "I can't believe you were kidding. Here I was thinking I was being supportive of your crazy idea."

BF:" "I know. That's cute."

So, yeah. I finally laughed. And every time I think about now, I laugh again. But the truth of the matter is, I know this man fairly well. Maybe, better than I've known anyone, and still I miss the clues. I can see why ditzy might fit, or even gullible, but I don't really believe I'm either. I just suck at reading between the lines. This isn't the first time. It certainly won't be the last.

In my defense, though, this very same man that was joking about Moonshine, is attempting to grow a pineapple in our kitchen. A pineapple that will take two years to actually grow.

At least, I think he is...

Hope, who can still laugh at herself so that must be a good thing.

Asperger's Syndrome, Obsessions, and other things I'm learning along the way.

I've been wanting to write something for quite a while now, but each time I would try I'd get stuck. First on where to start. Next of where to stop. I also sometimes forget that  people can't read my mind and I will leave out the important parts. Like a main dish. So...I guess this is the main dish.

It's been about a month since I've written anything here. Since Jack's behavior and anxiety issues prompted my further investigation into Asperger's or...Autistic Tendencies, let's just say for those that believe the Spectrum should be shortened to only include the severest cases. Ironically, his anxiety has eased up for the time being. It's been a huge relief, for both of us, I think. Unfortunately, it will be back. I know this because I live it.

Since I was here last, I've read four books, watched hundreds of YouTube videos, and read countless personal blogs on the subject of Asperger's. You could call it obsessive. I call it research. I call it finding answers. And answers I have found. But, with each answer came more questions. And more research. And so on, and so on. As much as I know people in my life  might wish I would "let it go", that's not possible. Aside from now finding the topic intensely interesting and the research (dare I say) fun, I've had one eye opening moment after another. Not just in relation to Jack but for myself as well. What I've also managed to do during my weeks of obsessive information gathering is remove the fear. Perhaps that comes from reading about so many women on the Spectrum and seeing myself in all of them. Not all of myself, but bits and pieces of me in each and every one of them. In any case, The A word is not a word I'm afraid of anymore. In fact, I almost feel a sense of relief. To live your whole life wondering what is wrong with you, why can't I do this? Other people can do this. Why can't I connect? Why can't I relate? Why I'm not like you..or you...or you? ...and then to find a (highly possible) reason why...is like seeing your whole life, your whole world through different eyes. A reason that explains the Anxiety, the Panic, the need for routine, the need for order, the need for quiet etc...A REASON. One all encompassing reason. It makes so much more sense to me than assuming I suffer from Anxiety (irrational or otherwise), panic attacks, a touch of OCD, claustrophobia, acrophobia, vertigo, gephyrophobia, IBS, GERD, Chronic muscle pain, and sensory issues (to name a few). Am I really THAT fucked up that I'd require all of these multiple diagnoses? Hmm. Maybe? Although one would certainly provide an answer to the most important question of ...If you can do A...why can't you do B? And the second question Why can't you just....... (insert whatever the hell I can't manage to do here)?  And lastly...why I can't be with  a group of three or more people without a drink in my hand. I can't. I think the last time I did that I was still a child. Anyone who knows me will attest the fact that they have never seen me in a group social setting without a drink. NEVER. ever. So does that mean we add alcoholic to that list as well? No. We don't. And no, I really don't think I'm crazy. I have thought that repeatedly throughout my life (hence the name of my Blog), but after hearing, reading, watching story after story of women who seemed just as complex, I don't think that anymore.

So what do I think? I think that the "Spectrum" is wide and vast. I think that "quirky" isn't just "quirky" and that it never really was.I think that the woman who read my 101 things about me on MySpace years ago and assumed I was on the Spectrum knew something I didn't.  I think that I think differently. I think that my son also thinks differently. I think that his Father probably most likely thinks differently. One of things that sticks out in my mind upon first meeting Jack's Dad, is thinking I had found "my people". I had found someone "like" me. I have a journal entry about it somewhere that I'll have to find. I've read countless accounts of this very same thing.

What do I know?  I know that the only way to be sure is to get a diagnosis. I also know that with or without a diagnosis it will be hard, if not impossible, to make anyone in my/our life understand.  I know that Jack's Dad will  probably most likely NOT want a diagnosis. I know that with or without said diagnosis I have learned more about myself in the past month than I have in the past 30 years. I've gone back through my memories and finally feel like I know things. Like why I liked to sit and stare at the clock (forever) watching the seconds go by. I know that I feel better now than I did weeks ago, and in making just a few minor changes my son seems to be feeling better as well.

I haven't decided what direction to go in from here. I'm still discovering things that keep blowing my mind. I'm still on the fence as to whether pursuing a diagnosis is the best thing to do. There are the people that scream early intervention on one side. And the people who actually exist in my life that would most likely discourage a diagnosis. With him being eight years old, early intervention isn't much of an option. That would have been needed to be done the other two times I went down this road. But then, on the other hand, eight years old is early as opposed to forty something. I'm still not sure having a diagnosis will provide enough benefits to make it worth it, I guess. He's smart. He's an amazing shape shifter  just like his Mom and Dad. And he's also uniquely himself. Some of that uniqueness will, no doubt, cause some angst in his life, but a diagnosis isn't going to take that away.

So for now, we wait. We learn. We live. My next posts should be less general and more focused on specifically why I think what I think and what I'm discovering.

Hope, who I'm sure is about to post a Blog loaded with typos....