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.

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99 Problems-Number One. Don't touch my shit.

Big problem. Huge. Huge Problem.

I have a friend on Facebook who's been posting these "Problems of an Aspie" for a while now and given the "lens" I see through they all ring true for me. I usually laugh when I read them because they are so familiar, but immediately after I laugh I feel a twinge (sometimes an intense twinge) of anxiety that each of these problems create. I thought it would be interesting, fun, a little scary and possibly therapeutic to elaborate a little more on each one and how it effects me personally. 

Problem #1. Other People touching my stuff. 

I hate this. I've always hated this. Even when I was child.  I knew I had to share my toys with my cousins, and being the agreeable, soft spoken little girl who never wanted to do anything wrong, I did. Still, I hated it, and god forbid  something ever got broken. There were inconsolable tears. It was the end of the world. The voice in my head would keep repeating, "I knew I shouldn't have let them play with it", over and over and over again. No one was responsible. No one was careful.  Honestly it was torture. I see these same tendencies in my son. He shares because he has to, but if it's something very important to him, he's started "hiding" those toys or objects so no one can get to them. 

I still have this problem as an adult. Luckily I don't have to share too much anymore, but even when my own child uses my iPad, I feel it. The anxiety. If he should happen to leave it on the floor that voice starts in again. It's automatic. It's involuntary. It just is. I simply don't like it. If I'm working on painting a doll, many times someone will come over to look at it (which I also hate, but working in the dining room leaves me little choice) and they will pick it up. Pick. It. Up. And I think...who does that!?  Who just puts their hands all over someones work?  I've voiced my discomfort with it a few times, but usually it comes out as "please don't touch that...or please don't ruin it."  I end up seeming like a crazy person who is extremely over protective of her vinyl heads. And I guess, in a way, I am. What I would like is for people to respect that and just know that they aren't supposed to touch my work. Ever. It won't hurt them at all not to touch something that doesn't belong to them. And for me, it would eliminate a tremendous amount of anxiety and an overwhelming feeling of invasion. Its almost as if a complete stranger has just touched me. Without asking and without warning. To sum it up, it just plain sucks. 

Just this afternoon I had to attempt to reel in my reaction to another incident. I say incident because to me that is what it was. To my BF, it was probably nothing. I also say "attempt" because I'm sure I wasn't completely successful. The back story is I had blood drawn this morning, which turned out to be difficult because I'm dehydrated. I have been on and off for the past month and I'm trying to fix it. Water alone isn't doing the trick so I got Gatorade purposely on my way home. The back even further story is I do this often, BECAUSE I know I'm dehydrated and more times than not my BF takes it, drinks it, or gives it to his son before Hockey. To give him credit he usually does ask first, and because, in many ways, I'm still the agreeable, soft spoken little girl, I say Ok. But it is torture. Today, I couldn't say Ok. I said something like, "I bought that purposely because I'm dehydrated. I don't mean to be a bitch, but..." I think he said something like...Ok...it's no big deal, relax. And most likely for him it is no big deal.  For me, however, it results in a full-on, internal Aspie Rant. 

You can't keep taking my Gatorade. I keep buying Gatorade and you keep taking my Gatorade. I take the time to plan and go to the store and buy what I need and you can't just take it because you don't want to take the time and plan and go the store. If you want Gatorade then say you want Gatorade when I ask you what you want at the store. Or leave early so you can stop and get your own Gatorade. If you buy something that you need I don't take it. I would never think to take it. And I hate it when you drink my water. 

Yeah. This is what happens. Luckily, it mostly remains internal, because, really, who would understand this? I sound like a crazy person going on and on about fucking Gatorade. It takes a tremendous amount of energy and restraint to keep these kind of thoughts from spilling from my lips. But unfortunately, the fact that I can't just let this out, is what makes the anxiety worse. I have to suppress my Sheldon Cooper like tendencies, because in real life, it's just not funny.  There is no laugh track. This type of ranting and raving will get me nothing but a diagnosis of certifiable. 

How to solve Problem Number One: Stop touching my shit. 

Hope, who lives in a place where nothing is simple. 

One tiny step for me. Mankind won't even notice.

Bonjour, mon petit poissons!  As you can tell, High School French didn't take me too far.

I am finally on the mend physically, I think. I'm finding some wood to knock on as we speak. After my first bout of sickness, I dove straight into a second, which has lasted much longer. If there was ever an argument against getting a flu shot, I would be it. I still have a little ways to go to be back to "normal" but the coughing has subsided and I'm sleeping. Can't really complain about that. Friday will tell if I'm in need of something stronger than just time to heal my raw and tired lungs. 

On the mental front, I'm still far from being mended. My stress level rises and falls with the tide it seems, but I'm sure it's because the situation with my parents is still unresolved and I still have no desire to think about it, let alone take action. 

Today, in therapy, we finally discussed another topic that has consumed my thoughts over most of this year, and has also seemed somewhat unresolved. Up until this point we have focused mostly on the anxiety and what causes it and what revolves around it and how to deal with it. Today, we finally talked about Asperger Syndrome. I've gotten to the point where I do feel a certain level of trust with my doctor and I value his opinion as a professional as well as a person. When he thinks something is bullshit, he's not afraid to say it. 

The subject was brought up originally in relation to Jack, because although he is doing much better this year at school and in life in general, than he was when we made and chickened out of the appointment with New England Mental Health, there is always something. That little something, in what he does, or what he says, or in what upsets him...that always brings it back to forefront. Not necessarily negative things. Just things that bring it all back and leave me questioning if I really am doing the right thing, by essentially, doing nothing. This weighs on me heavily, and I'm sure adds an invisible layer of stress and anxiety even when I'm not fully aware of it. Mostly I just needed an opinion. A professional opinion for once, to help me with the constant internal debate of " to diagnose or not to diagnose."  What I got was some long awaited peace of mind. 

Although, the discussion began with Jack, I could see the pieces of the puzzle falling together for him, almost the same as they had done for me months ago. To be honest, that didn't surprise me. What did surprise me, was his negative opinion of places like New England Mental Health, that focus their whole evaluation on deficits and problems and looking for what is "wrong".  This was one of the main reasons we backed out of the eval in the first place. I couldn't stand the thought of putting my child through that and somehow making him think there was something "wrong" with him. It really helped me to feel better about the decision to forgo the appt. Up until now I've felt like we just kind of "dropped the ball" and maybe did the wrong thing out of fear. After today, I don't feel that way anymore. I feel like we went with our "gut" and we made the best choice at that time. 

After giving him some of the background information as to why I've suspected it on and off since he was two, we talked more about how and when and if to make the decision to diagnose. What are the negative aspects? What are the benefits? Is it the end of the world if I don't pursue it for him now? I can't say I walked away from today's appointment with any information that I didn't already have, but I can say I walked away feeling much more confident in my instincts and my gut feelings. I walked away with a much lighter cloud hanging over my head.

My doctor did say, as I've already figured out myself, that one of the benefits of having a diagnosis is gaining knowledge to help you understand yourself better, and to help others understand you. To which he added, "But YOU already see things through that lens. You are helping him understand himself better than any team of therapists." And there it was. That was my answer. And that was my permission. My permission to stop doubting myself, and to keep on keeping on.

Hope, who feels validated and much less like a Crazy Muthah, after all. 

Fall, my brain, and a little Poe.

Seems like fall has arrived this morning. Aside from the food and the beer, it is not my favorite season. Along with the cold, it brings dark mornings and dark evenings. Even on the days that the sun is shining you can tell how far away it is. It doesn't warm you. It doesn't shed the same kind of light. I definitely blossom in a climate that is warmer year round, but as that isn't a possibility for me anymore, I'll just try hard to focus on the food and the beer.

The last few weeks have been hard. They've been filled with drama, lies, selfishness, noise, disruptions to routine, tears, anger, doubt, confusion, misunderstandings, revelations, and last but certainly not least anxiety. I feel like I will need at least twice that amount of time to recover fully. The truth is I won't get much recovery time. Instead I will dive right back into busy, which is probably not the worst thing. Work has picked up quite a bit and I'm expecting it to be a crazy Holiday season. In addition to dolls, I've sold some art, which has inspired me to start making more. 

A friend sent me a text just a little while ago, and in the text she asked "How was the visit with Mom?" In true fashion, my Aspie-like brain (what we can call it until diagnosis) dove on to a track of racing thoughts. How do I answer that? Should I just say fine? That would be a lie. Is it just a polite question that doesn't require an in depth answer as to how it is really going? How would most people answer? It's going well. Having a good time! Smiley face. Smiley face. Smiley face. But that's a lie. If I say it's been shitty, I probably won't  get a response. People don't like to hear about shitty. There's really not enough time to get into this. 

And so on and so on and so on. 

A simple question that most people wouldn't think twice about, sends me into over analyzing and panic so I will say the right thing. So I won't say the wrong thing. And at the same time my brain is screaming at me because telling the polite social white lie makes my skin crawl. How are you? I'm fine, how are you? It makes me want to vomit. 

This is automatic. This is just how it is. This is one more reason why it's easier for me to be somewhat shut off, with limited contact. My brain just goes through much more processing than most people I know, and honestly it's exhausting. I'm exhausted.

So instead of any more updates today, I will leave you with this. One of my favorite Poems by one of my favorite Poets. It makes more sense now. I don't find it sad anymore.

Alone

From childhood's hour I have not been
As others were; I have not seen
As others saw; I could not bring
My passions from a common spring.
From the same source I have not taken
My sorrow; I could not awaken
My heart to joy at the same tone;
And all I loved, I loved alone.
Then- in my childhood, in the dawn
Of a most stormy life- was drawn
From every depth of good and ill
The mystery which binds me still:
From the torrent, or the fountain,
From the red cliff of the mountain,
From the sun that round me rolled
In its autumn tint of gold,
From the lightning in the sky
As it passed me flying by,
From the thunder and the storm,
And the cloud that took the form
(When the rest of Heaven was blue)
Of a demon in my view. 

Edgar Allan Poe

What I did at Summer Camp.

One my goals in taking my Facebook hiatus was to find more time, and to use some of that time for more writing. Again, I'm not sure what it will amount to if anything and right now they're just little snippets of a whole picture.

This past week was Jack's Tennis Camp, which went a lot better than expected, and I'm proud to say he completed the week and can now hit a Tennis ball. Sort of. The beginning of the week, however, was tough and I give his father all the credit for pulling him through this one. He was patient, understanding, and stayed the whole three hours at a camp that was drop off and pick up. The Instructors also deserve some credit for recognizing his need for one on one instruction and some alone time practice. Once he knew what he was supposed to do and was allowed to do it, on his own, his comfort level increased dramatically and he was able to join the group and actually enjoy himself. It's amazing what a little understanding and adjustment can do.

The whole experience and the words that my son was saying at the beginning of the week sent me back thirty something years to my own experience with Camp, so I decided to write about it and share it here. It's been an experience that stuck with me and writing it out was not only therapeutic but also eye opening. Enjoy! Or not...

Summer Camp

One summer, back when I was seven, my then foster mother came up with the bright idea to send me to camp. It was the YMCA Day Camp and it was only for a week. At least I think it was only for a week. In any case, that was the length of time I went. I’m sure she must have been thinking something like, “Well, now I have a child. It’s summer time. What do you do with a child in the summer? I know! You send her to camp!”

Camp. A supposedly fun filled, noisy place where I could run and swim and play sports and be competitive and learn skills and socialize.  A perfectly logical choice for any normal little girl, I suppose. Only I wasn’t any normal little girl. People said I was shy, but it was more than that. I could barely run, and certainly not fast.  I could not swim. I didn’t and hadn’t ever in my life played a sport. I wasn’t the least bit competitive. I had no desire to learn these skills, and I lacked the ability and the voice to socialize with people I didn’t know. Surely someone else in my life must have known all of this besides me. I can almost hear them now. "It will help to bring her out of her shell..." This was a phrase I had heard often, and it made me wonder if they thought I was a turtle, or perhaps a clam. In my mind I saw the image of a large seashell strapped to my back so it looked as if I had wings. I liked the image and didn’t see any reason why they would want me to come out of that shell.

The truth was, I was perfectly happy in my “shell”. It was where I felt most comfortable and safe. There was no need to try to pry me out of it. The truth is, even today, at the age of forty-one it is still where I feel the most at ease. No amount of prying was ever going to turn me into anyone else. My shell is my home. Perhaps I am a turtle after all.

The first day of camp stands out more vividly than the rest. It started with a car ride to The Thunderbird Motel, which was where the bus would pick me up. I’m not sure if the word nervous can fully describe what I was feeling. I was nervous, that’s for sure, but it was more than that. My thoughts were racing, although they never dared to become actual words. And my thoughts were also pervasive. What will the bus look like? My school bus is yellow, but I rode a bus once that wasn’t yellow. When will it get here? Who will be on it? Kids on the yellow bus are mean, but there weren’t any kids on the other bus. Where will I sit? If it’s not a yellow bus I’ll have sit next to a strange man. How long will it take? I got sick on the other bus. If it’s not a yellow bus I’ll get sick on this bus. What if we get lost? What if I can’t find my way back?  Where do I go when we get there? Who will help me? What will they make me do? Will I be able to do it? I won’t be able to do it. They will be mad that I can’t swim. What will we play? When will we play? Where will I put my bag? When will I get there?  What if I can’t talk? They will get mad if I can’t talk. Will it be in the woods? How will I know what time it is? How will I know when to leave? How will I know the right bus?  And on and on it went. This, all before I even started my journey. I had no idea what to expect, and I needed to know what to expect. I also needed to know what was coming next and in the precise order it would come. I only had my past experience to rely on and believed if something happened once, it would happen, again and again and again. Life experience has since taught me that this isn’t necessarily true, however, I still can’t force my brain to believe it.

The bus ride ended up being the least of my worries, simply because I didn’t have to say anything to anyone. It was noisy, as all the other kids yelled rather than talked, but I managed to stare out the window and tune most of it out. The bus ride to and from would end up being the best part of the whole experience.

Once we arrived at the camp all of my racing thoughts and questions returned, along with my inability to speak above a whisper. “Speak up, Hope” was another commonly heard phrase, especially in School, in front a group, or with people I didn’t know.  I would try and try, but if I could get the words out at all, it was never above a whisper, and it hurt to try. It physically hurt. It’s only recently that I learned that there was an actual name for this. Selective Mutism. Eventually, this was something I grew out of. But even now my voice is the first thing to go when I’m extremely nervous. It’s as if I have a volume button the instantly turns down the moment I’m around unfamiliar people or places.

The Camp Counselors were lined up as we exited the bus, and although the process by which they determined which child belonged to which counselor is all a blur now, somehow, I ended up being assigned to one. To this day, I’m not completely certain I was ever even with the right group to begin with, as I was always the kid “left over”. The one without the partner, or the fifth wheel in a party of four. I was the quiet, blond haired, blue eyed, day dreamy little girl that completely went unnoticed.

Day one, for me, was a mess. It was complete and utter chaos and confusion, as we bounced from one noisy activity to the next. I was somewhat relieved when our first stop was to the locker room and I learned where to put my bag. I made a mental note of what building it was in and specifically what locker I had. I only had to count from the first locker to the left of the door. One, two ,three, four, five. Five. I had the fifth locker. If I knew nothing else, I knew where my bag was and how to get it.

The rest, however, when I remember it, resembles a dream. The kind of dream where nothing really makes sense and you’re always late, or running behind, and you’re trying your best to figure things out, but still have no idea what is going on. All of the other kids in my group seemed to have some kind of mental telepathy or super powers. They all knew what the others were doing without anyone ever having to speak the words. They all knew the rules to the games and how to hit the ball and in which direction to run. I knew none of this, and if anyone was explaining it, I certainly couldn’t make it out above the voices of chattering children. I remember trying to ask the counselor questions.  I remember standing by her side and waiting for her to notice that I was there. Most times she didn’t notice, and the times she did, she couldn’t hear me and would get annoyed. At least it seemed to me like she was getting annoyed. It seemed to me like I was doing everything wrong.

Lunch time that first day, was probably the longest half hour of my life. For reasons I will never comprehend, my foster mother, had completely missed the fact that she was supposed to pack me a lunch. A mistake that she would never make again, as I reminded her of it continuously for months after. While all the other children and counselors sat and ate their brown bagged lunches at the picnic tables scattered among the trees, I sat, alone. Eventually one of the adults noticed I had no lunch and gave me an orange. An orange that I couldn’t peel, as I had no finger nails. I did the best I could, but by this time lunch was almost over and I threw most of the orange in the trash.

Swimming came after lunch, which I thought was out of order because everyone always said to wait to go in the water after eating.  Because I didn’t actually know how to swim I was in the beginner group and I needed a partner. Most of the kids paired off immediately and the two girls I asked to be my partner decided to partner up themselves. The councilor ended up being my partner, which was fine with me because I figured she wouldn’t let me drown. I had fallen off a raft in an above ground pool at age five and was convinced that I had drowned once already. I wasn’t in a hurry to let that happen again.

The rest of the afternoon was filled with running races and mouthing the words to songs I didn’t know. The highlight of my day was heading back to the locker room, as I knew exactly where my bag was. One, two, three, four, five. The fifth locker. I was changed and ready before anyone else, wanting nothing more than to find my bus, where I could sit and stare out the window for the whole ride home. I remember I was in bed by 6pm that first night, out of complete exhaustion and overload. And I remember my foster mother commenting on how “All that fresh air must have tuckered her out.”  I had told her that I didn’t like it, and I remember thinking, why doesn’t she believe me?

The rest of the week, was much of the same, except that I had a lunch and could get out of having to talk by shoving food into my mouth. By the second to the last day a new girl, Linda, arrived, which gave me a partner finally, as all the others had pretty much stuck together. For some reason, she insisted on calling me Diana, and I let her. Linda and I were partners in swimming, the egg race and the three legged race. She was a bit bossy, but it made it easier to figure out what I was supposed to do. Linda and I didn’t sit together at lunch.

On the last day, as we were changing in the locker room, a pudgy little mean girl told me she hoped she would never see me again. I was completely shocked and was sure she was talking to someone else. I looked around me, but it became apparent that she was indeed talking to me. I’m not sure if it was because I knew it was the end of the last day, but somehow, I found my voice and told her “I was glad I never had to see her again.”  I wasn’t mean about it. In fact, I didn’t really even mean it as I had no idea who this girl was. Did she know me? Was she in my group? Did I know who was in my group? No. The truth was, I didn’t. I always knew where my group was because I had studied my counselors face and the length of her brown hair. I could recognize her and Linda. No one else. After spending an entire week with these kids I didn’t know any of them. I didn’t know what they looked like and I knew no ones name, except for the bossy little girl, that called me Diana.

Hope, who probably isn't really a turtle. 

Also, google drive can bite me.

One more thing I don't understand.

I remember when I was a child my mother used to confuse the hell out of me. My adoptive mother. I would see how she was with me, her niece and nephew, my father, her mother, her sister, her sister-in-law, etc.., and although I was sure she was still the same person she didn't act like it. Her mannerisms changed, the tone, sound and pitch of her voice changed, and even the way her faced moved changed. With each different person she engaged with she became "someone else". When she was with her sister, she was loud, blunt, and had a thick Massachusetts accent. When she was with her sister-in-law her voice became quiet and she pronounced each syllable of each word to the point of annoyance. It was like this with everyone. "Why are you acting like that?" I'd ask. "Acting like what?" she's say. "Like you're in a play. Like you're pretending." I'm not sure she ever got what I was asking. I am sure she eventually got offended when I told her she was being fake. But, really, she was, whether she noticed it or not.

It's not that I was unfamiliar with the changes in people entirely, it was that I was confused as to why there were so many and why people couldn't just be who they were ALL THE TIME. My birth mother was probably the first person to introduce to such change. She went from Sober, quiet, and soft spoken to Drunk, loud, and angry and lastly to completely withdrawn. (A trait her and I seem to share, especially as I find myself more and more alienated as the years go by.) With her, though, I knew it was what was in the bottle that brought about the change.

As the years went by I realized that this is what people do. That what I see as being "fake" is actually how the majority of people interact with one another. They share with some, they hide from others. They swear in front of her and they keep their language G rated in front of him. This is what most people do and no one really gives a shit. Everyone accepts it. Or perhaps they don't notice the subtle differences?  I've learned this "art form" to a point. I know there are definite times I can't be myself completely. After having a child you are forced into censoring yourself to a point. For the most part though I'm more like my Birth Mother. I have the choice of being myself, letting the anger out, or completely withdrawing. That's it. I find myself, now, having specific times where these three options play over and over like a pattern. I can even tell you now when it will happen. If given a choice (and maybe I do have a choice after all?) I would just rather be myself. If how I am doesn't match whatever person you are deciding to be today then I guess that's too bad. If how I am doesn't fit into the world of ever changing relationships then I have to seriously consider the fact that maybe that is a world I don't belong in.

Relationships. Hard. Nearly impossible and always changing. If I hear one more time about how natural that is I think I might implode. We make a choice somewhere along the line to STOP giving of ourselves. We decide that for some reason it's not nearly as important as all of the other little distractions in our lives. Maybe it's because we get lazy, or maybe it's because we're simply just not that into it anymore. No one will admit that, of course. That's far too much honesty for the average relationship to stomach.  I'm mean, just because I take you for granted, doesn't mean I don't want you around.  Ridiculous. People like me don't play this game very well at all. I know this. I've known it since the first time I ever allowed someone else into my world and my heart. Is it rigid thinking? Maybe. Or maybe I just don't "grow" like other people do, and I'm doomed to stay lost in a fairy tale that never existed.

In any case, even at the ripe old age of 42, people still confuse me. I don't understand why now because of "that" we have to act like "this".  Because, damn it, after well over a year of continuously hearing that nothing was changing, things fucking changed, and apparently they are never going back to the way they were.

Hope, who has learned that even though she saw, heard, smelled, tasted, and felt the change coming, ultimately, nothing she did ended up stopping it. 

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.