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.

. 

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. 

Testing. Testing. Aspie or Not?

Over the past four weeks or so I've been making notes. A list of personality traits, behaviors, oddities, and what have you for both Jack and myself. Mostly, for something solid to give to the doctor. A hard copy, if you will, because when faced with the task of talking about symptoms there in the office, I'll go blank. I always do. I'm not sure I'll get to them today, in fact, there are so many they may need to be categorized and post in separate entries.

So before the traits...why did I decide to include myself in this process?  A few reasons, actually. First, my ability to understand my son's inability understand certain things was a red flag for me. Not initially. Only when I realized that no one else seemed to and I kept getting the "Why can't he just..." comments from people. Could it be just because he's my child and we share some kind of unspoken bond?  Sure. It could be. Could it be Mama Bear Syndrome where I feel the need to protect him no matter what?  Uh huh. But, again, I don't think it is. Next, I kept stumbling across the same story over and over again. Parent has questions/concerns about child/Child is diagnosed/Parent or Both Parents are later diagnosed. Genetics. In almost every single account I read, this was the case. And lastly, the online test, which you can find here.

The first test I found was the AQ (The Autism Spectrum Quotient) My intention was to have Jack take it, which turned out to be more difficult than I had anticipated. If he's not interested, he's not interested and it's a pretty long list of questions for an eight year old. While I was reading the questions, however, I was intrigued by how many related to me, although they do ask them in a backwards way. So, rather than forcing my son to sit through the torture, I let him go play his Wii and I sat and took the test. My results where off the charts. Okay, so big deal. It was one test. Maybe I didn't answer it as honestly I could have. I decided to take it again, but this time I would only answer definitely agree/disagree on those things I felt/did all the time. Not just once in a while. The results changed only slightly, still leaving me well within the Asperger range.

From there, because I can't seem to let anything go, I ended up here taking the battery of tests listed. I scored high in the Asperger range on every single one of the tests, except for The SQ (The Systemising Quotient). If I remember correctly there were a lot of workings of a railway system, trains, and engine type questions. Not surprising I would score low as I'm interested in none of that. (I'm guessing that particular test leans more toward the male species). What really shocked the hell out me, was how low I scored on the Two-Factor Imagination Scale, which basically says I have very little Spontaneous Imagination.  If someone were to have asked me that weeks ago I would have said I have a great imagination. I'm creative. I write. I paint. I make things. (Also if anyone would have asked me weeks ago..."Does Jack spin?", I would have said no. The reality? Jack spins. A lot.) After spending more time thinking, recalling, researching I realized there is nothing spontaneous about any of the things I do. There is a process, for sure. A process that includes structure and planning. The Face-Voice Battery tests were much the same. I consider myself to be very intuitive. To be able to pick up on peoples emotions/feelings when in a room. When faced with watching videos or looking at pictures and picking out the emotion of the subject, I failed. Miserably. They were just short clips and I kept thinking they were too short. I needed more information, about the setting, the context, and the subject they were talking about in order to be able to tell what the look of their face really meant. Socially, I'm ill equipped. (Unless, of course, I'm drinking, and even then, I'm probably still ill equipped,  I just don't care.) I know this and I completely expected to not be considered "normal" in that area. The rest, however, was a surprise.  (My BF agreed to take the tests as well, after I told him what I scored, so we could compare and call bullshit if needed. He hasn't yet though. He does have ADD, however, so I'm guessing all this test taking won't be nearly as enjoyable for him as it was for me)

Needless to say, all the testing and scoring raised even more questions, prompted even more research and resulted in more digging into my past. (Incidentally, the fact that I enjoyed the questions, the research and the digging is also a strong personality trait of person with Aspergers.) What it lead me to directly, was Women with Asperger's Syndrome. More reading, listening, watching and one holy shit moment after another. For the most part, it's been boys being diagnosed with this Syndrome, leaving an impression that only boys have Asperger's. This is far from the truth. Girls and Women have seemed to slip through the cracks simply because girls are different than boys. In general girls, even at their worst, are better at socializing, coping, adapting and camouflaging. It's far more acceptable for a little girl to be constantly spinning. She's a little girl. She's a Ballerina. A little boy spinning, well, that's just odd. Normally these woman are diagnosed...with something...or better yet a long list of somethings. They don't slip through entirely, they just don't normally get a diagnosis that fits.

After all my concerns about Jack over the years I was pretty familiar with the signs in toddlers and children. But what about Adults? What about Women, specifically?  Half expecting to find only slightly altered versions of Rain Man, Sheldon Cooper, and Amy Farrah Fowler, I set out  to find a profile of women with Asperger's Syndrome. Aside from learning that there is no SET profile, because just like all people are different, all people with Asperger's Syndrome are different as well, I also learned that there are some really amazing women on the "Spectrum" who I will continue to read/follow, regardless of my own findings, simply because they are Fucking Awesome.

As far as traits go, this list by Author/Comedian/Singer/Songwriter/Musician/Aspie Rudy Simone, is pretty extensive, covering a lot of the bases. I've already read two of her books and am in love with her down to earth honesty about who she is. Sam from Everyday Asperger's also has this list of traits as well as a non-official checklist that was not only fun to read, but also like looking in a mirror. Tony Attwood was also a good reference, and I've started reading his book as well.

Am I obsessed? Yeah. A little. But not for the wrong reasons. At least I don't think so. I'm aware of the dangers of "self-diagnosing" although, ironically it's usually what I have to do. I don't take my concerns to the doctor. I normally take my conclusion. If I take my concerns they will miss it every time. This could be partly my fault because, like I said, I go blank, and giving them the proper information right then and there is nearly impossible for me. (especially if it is physical symptoms and I don't happen to be having them right at that moment) Now if I take them my conclusion, 9 times out 10 I get..."yeah, yeah, you know, you're probably right." I know. You're Welcome. In this case, I admit. I don't know. I have a strong feeling, and for now I'm going with that and just gathering as much information as I possibly can for as as long as I enjoy gathering this information. (I'm doing other things too, by the way)

Next up, a more personal list of traits...or me over sharing, as usual. Whichever.

Hope, who seriously needs to get a better chair and ass cushion.