Diagnosis is 90% of the Cure

Before I even start this post I want to be clear: I am among a large group of Autism Spectrum people who DO NOT BELIEVE Autism needs to be cured. Just want to make that clear (based on the title, it could appear otherwise).

When I say "cure", I simply mean "manageable" or "less stressful".

This weekend I went to women's retreat. This is an entire weekend, Friday night thru Sunday afternoon, where there are usually close to 400 of us women in one resort. We have a lot of seminar/meetings, meals together, more classes, more meetings. Usually it amounts to 4 large whole group meetings, and 2 smaller divided times for 4 different presentations, as well as 4 meal times as a group.

The only problem with this is that there is very little down time. Between the large groups, the small groups, there is almost literally no time at all to be by yourself, unless you skip a class. And for me, I go for the meetings, so I am very hesitant to skip one at all, and in addition, it is in the fall, in MINNESOTA (who scheduled this at this time of year!?) so its COLD, and not a whole lot of fun to be anywhere but inside anyway. This year it even snowed, which made it worse for me. 

This is only the second time I have gone to women's retreat. Last year I felt as if I wanted to smack people in the face. Not because they were doing anything wrong, specifically, but because I was internally so empty, I had nothing left. My bucket empties when I'm with people, and it only refills with time alone to do what I want, and again, no time to refill the bucket. 

This year was different. Now I KNOW what I'm dealing with. I KNOW why I feel that way. I KNOW my tendency to be overwhelmed and empty. I did manage to sneak away after a couple of the meetings. After the Friday night meeting, I went out behind a tree by the lake. It was my favorite kind of tree - a weeping willow. As I stood under there, I could breathe. I thought about sitting down on the ground (it had not snowed) and when I did, apparently I spooked a beaver about 5 feet out into the lake, who smacked his tail a few times, and scared ME! I took some pictures and just relaxed a while. 

By the end of the weekend, I think I was overreacting a little over text to my poor husband, (but really, asking 800 times this weekend if I was coming home yet IS kinda annoying), but I was at least able to say that this is normal for me. I will be just fine. It isn't that people are trying to be rude or mean, I'm just overwhelmed, exhausted, and my bucket is empty! All I had to do was be patient with myself, knowing that its just a few hours until I would leave and have the car to myself all the way home. AH! :)

And I had a quiet ride back. 

I did have some people I followed back at least part of the way (luckily, the part that it was snowing the most). So that was nice, at least I knew if I went in the ditch I would have someone right there. lol

I could have ridden with them, and saved the gas money. But I honestly NEED that time in the car alone. If I didn't have that, I wouldn't have anything when I got home to a husband and son who missed me very much! I also got lucky and got home while hubby was loading the truck (with son with him) so I got to unload the car, unpack and get "organized" after getting home, as well as sit and watch part of a movie, all before they got home. So that was nice, and helped my bucket to be extra full for my son and hubby. :) So it ended up being a good relaxing evening. We even went to bed SUPER early (I did not see the clock read 8 PM last night, which is UNHEARD of, even though I could have found a lot to read or play on my phone!)

So, as the title implies, KNOWING is 90% of my "cure". KNOWING that I have Aspergers, the social limitations that go along with that, and the needs I have being the person that I am, it makes life a lot more enjoyable and easy to deal with. I know MUCH more about who I am, and why I feel the way I do sometimes. I wished that every person could find out for sure, could know for sure. I wish that 100% of people knew more about Autism Spectrum (as well as many many other conditions/personalities/diseases/handicaps/etc) so that instead of being afraid of the different, we can understand each other better, and understand each other's needs, and be more able to provide for others the things they need in their life and their situation. KNOWLEDGE = "CURE"

Insult

http://www.psychologytoday.com/blog/my-life-aspergers/200811/are-aspergians-really-rude-and-inconsiderate

Read the post linked above. THEN read my post.

I know there is a lot of confusion. People are quick to get offended. People are quick to blame the other person for the fact that they are offended. It's almost to the point where I think some people actually ENJOY feeling angry and insulted or something. 

Some might argue that being offended to words that someone else said is justifiable. I argue that unless you know for a fact that the other person's intentions were to insult, you have no right to insinuate anything negative, and your feelings of insult aren't anyone else's problem.

I feel that there is a much larger majority of people who have Aspergers or spectrum. Therefore, it is of great likelihood that a person will run across someone who is undiagnosed, and therefore completely unaware that they have differences in thinking and processing information. So when they say something you consider rude, you have no knowledge to go on that they aren't being rude on purpose. You have two options:

A: Feel insulted, lashing out, plotting some form of revenge, and responding with the best offense you can to let this person know they purposely (in your mind) insulted you in some way, and that its unacceptable.

B: Stop and think. Is this person intending to insult me? Maybe ask them "Did you mean...?" Or simply to assume the best and move along with conversation. Or even walk away.

With Aspergers and in my personal experience, I've gone on with the conversation, without a single roadbump. I haven't noticed your facial expressions of frustration or insult. Just waiting for the next conversation or something. Typically, just to add, I'm feeling uncomfortable in the silence. Am I supposed to say something? So I might try to move on to another topic since you are being weirdly quiet. Of course this makes me seem even more rude because I am ignoring your "obvious" emotional distress of insult. 

You tell me which sounds like the better choice; A or B? Most people would logically choose B, because it is rude to be mean, to lash out, to plot revenge, to tear someone a "new one". However, when actually faced with the situation, its like all logic goes out the window. Feeling insulted is an emotion, and logic and emotion are in two separate areas of the brain. Emotion is fight or flight, and there are far too many people who are interested in the fight. It seems as if they enjoy staying and fighting it out, rather than just walking away until they can give themselves time to get out of emotion and back into the logical. 

"Of COURSE that person wasn't trying to insult me. Logically, I can see where they were just ..... or ......"

Even for me, if I read something, and I wait overnight, I can logic my way out of frustration over it. If I can do it, NT's can do it too. So it shouldn't be the responsibility of the Aspie to share their thinking processes with the world, if they do not want to. It should be the responsibility of every person to behave in a respectful manner, even when encountering vile, insulting person. "Kill them with kindness". "You'' catch more flies with honey than with vinegar". "Do unto others...".

The reason that an Aspie might say something that could be interpreted as insulting? Because we don't play those little games. We don't sit around thinking about how to insult people, and honestly, I don't sit around thinking about all the ways that people insult other people so that I can plot what kind of meanness to spread just because I can "use Aspergers as an excuse". What kind of dishonest person would do that? "I have Aspergers, so I can say whatever I want and get away with it! HA! I'm gonna go find someone to insult and blame it on Aspergers."

That's not what I'm saying. That isn't how my brain works. 

READ this link!!!

http://www.adhdattorney.org/?p=621

"Another main characteristic is that these socially uninhibited children will say exactly what’s on their minds, without regard to social implications. They might find humor in things the average person won’t, or might be very literal and not find the humor in a subtle witticism that all their peers are laughing at. They just might not “get” a very obvious joke. They are often mistaken for impolite or rude. There are painful social implications for these children."

"He notes the Asperger child’s different perception of the world around them and their own unique way of experiencing sensory events. He points out their strong need “to seek knowledge, truth and perfection,” but they just do it differently than more typical children. To them, the solving of the problem is more important than what others might think about them: They see details, as opposed to the whole."

The truth is more important than whether or not you're insulted by the truth. I won't know you will be or are insulted by it. I just know a truth, and if you don't like it, or don't agree with that truth, that's fine. Just don't blame me for the fact that you feel insulted. 

It is painful to have people get insulted at a lot of things you say. It is almost as if you are being told you shouldn't talk because what you say offends everyone. Almost as if you are being told "it doesn't matter what your opinion or truth is, if it offends me I don't want to hear it". 

No wonder web searches and browsers are only giving you search and ad information related to your previous interests, posts, or searches. Because people honestly only want to hear things that agrees with their thinking. They don't want to break out of the box and remain logical, sensible and calm. They want to only hear that people agree with them, and they want to smack down with anyone who doesn't. 

The next time you encounter a rude person, step out of your box of comfort for a minute. Either ask for clarification, or start telling yourself that they didn't mean it that way (even if you think they did). This is as much for your benefit as it is for the other person. You avoid an arguement, and you are on your way to tolerance, which we ALL could use a dose of.

This is election season. Everyone needs to hear the message that most people do not intend to insult (most of the time). Especially now, with the elections, everyone is more and more polarizing every time. This is causing division everywhere, from workplaces to families. 

So, I ask you simply, just stop being so offended all the time, and especially stop blaming someone else for it. Who cares if they think you are a selfish rude snob (an example of something I would NEVER SAY, let alone imply!). That's their (wrong) opinion. Let them have it, and move on, instead of getting all insulted and lashing out in return. EVEN WHEN INSULTED, treat others the way you want to be treated.

Teachers & Aspergers

Not one of my teachers ever indicated, understood or tried to figure out why I was so different from other kids. I loved my teachers (with some, literally, I LOVED them, LIVED for them and some days I went to school ONLY because they were there.) But none of them had a freaking clue. I'm sure that they all felt I was different. I'm sure they all thought I was weird, unique, special, smart, talented, peculiar, strange, or even flat out insane. 

It really isn't their fault. Though Hans Asperger first noticed qualities of the disorder (or, I prefer to say REorder) in 1944, even in the 1990's it wasn't common knowledge. In 1992, it was known by psychologists, but I'm going to guess that most of the knowledge about it at that point was almost limited to those experts, and one may have only found out about their diagnosis by seeing a psychologist. For many children, like myself, they just viewed themselves as odd, different and their own person, and not necessarily someone needing to be evaluated. Again, it wasn't common knowledge that these disorders existed, so there was no real provocation to seek professional help or diagnosis. 

"Aspergers and Girls" says
"Any time there is the combination of social immaturity, perservative interests, lack of eye contact, poor handwriting, poor gross motor coordination, repetitive behaviors, isolation or teasing by peers, falling grades, and being viewed as "odd" by teachers and peers, Asperger's Syndrome should be investigated."

Unfortunately, this book was published in 2006, far too late for me, or anyone like me, in the 80s or 90s, and quite possibly the early 2000s. 

I appreciate all of the teachers who took time out of their lives to make me feel comfortable and special. I appreciate the time that they took to protect me under certain circumstances, and to give me literal hiding places when I was overwhelmed, abused or bullied. This happened A LOT. So, I am grateful.

Though this disorder was not well understood back then, there is almost no excuse today. If you are involved in the lives of children in any aspect, you should at least have a general idea of the signs or symptoms of Aspergers and other disorders (sensory or otherwise). It might not help you get the child diagnosed or into special therapies however. Some parents do not want to hear these things about their kids, or already had feelings their child was different and just aren't able to face it. However, it can give an educator a very important awareness of children's differences, and ways to manage, deal with and guide children who are different. 

If you are an educator, it doesn't take a semester in higher education to learn about the disorder. Pick up a couple books on the topic. Read materials online. It is really not rocket science. Just knowing can save a life. I know sometimes I felt as if my friendship with and for my teachers saved mine. It is CRITICAL that teachers, who are the ones interacting with their students for 6-8+ hours a day, become aware of the differences in personalities, thinking processes, and behaviors associated with a true Asperger or Autism Spectrum Disorder.

This isn't something that should start in the big city schools and eventually in 20 years be in the rural schools. We need it in ALL schools, NOW. We need all teachers and faculty to be able to notice these differences, and do something about it. I know teachers are capable of this, because they wouldn't be teaching if they didn't care about kids. (They sure aren't in it for the money!)

So, educators; get educated.

Two books I have read, and can be a simple, quick and easy introduction to Aspergers specifically:
The Complete Guide to Aspergers Syndrome - Tony Attwood

Aspergers & Girls - Various Authors

Well, It Finally Happened....

Well, I honestly didn't think this would ever happen.

I won't go into all the details, but my 5 (almost 6) year old son tried to joke with me today, with NO indication he was joking. No facial expressions, no smiles, no laughs, no "I'm just kidding mom...", nothing. He just started in on some story, and I got upset because it could have been a safety issue. 

But he was joking. Again, he gave me no indication of jokes. Now, I come from a family of jokesters, and I'm married to a jokester (who makes it very clear when he's joking, especially if I don't act like I know that).

But I had no clue. I thought we knew each other pretty well, that what we have works, and that I got what he said and he got what I say. But I guess it was bound to happen eventually.

I tried to explain to him I sometimes don't get joking or kidding around. He has to be clear, he has to tell me when hes joking, or laugh or smile or something to let me know he's kidding.

So frustrating. I don't want to do this with my own kid, especially the part about getting upset at him for no reason.

Sign This For Me

http://www.change.org/petitions/fairview-range-regional-health-services-hibbing-mn-create-a-position-for-an-ibclc?utm_campaign=new_signature&utm_medium=email&utm_source=signature_receipt#

Please sign this for me. This is a need and every woman should have access to someone who can help them in the best interest of their baby and their breastfeeding experience!

http://americas.iblce.org/what-is-an-ibclc

Play

Play is an odd thing to me. It's some kind of back and forth pretend game with no rules. Aspergers, of course, doesn't know the rules to NORMAL social interaction, so the rules to play are absolutly baffling. 

Tony Attwood says in "Aspergers and Girls": "They often lack reciprocity in their natural social play and can be too controlling when playing with their peers. This is illustrated in Liane Holliday-Willey's autobiography.
The fun came from setting up and arranging things. Maybe this desire to organize thigns rather than play with things is the reason I never had a great interest in my peers. They always wanted to use the things I had so carefully arranged. They would want to rearrange and redo. They did not let me control the environment.
"

I find this to be exactly how I remember being as a child. I took GREAT pleasure out of organizing all of Barbie's things. When we finally got a "closet/box" for Barbie, all I did was organize things. It disturbed me greatly when pieces (ie: a shoe) was missing, because then the set wasn't complete. I do remember playing scenes and stuff, but honestly, I would rather set up and organize. 

I am still this way. My son is very interactive. He loves to be interacted with, played with. When it comes to legos, I can spend long long hours doing what I did with legos as a child: organizing, separating, building. But when it comes to acting out a play scene, I'm overwhelmed and clueless. Then of course I feel extremely guilty for not wanting to play with my son, for not knowing how, for not feeling comfortable, and for not being "able" to let go of my own selfish feelings (yes, I feel they are selfish feelings) to set that all aside to make my son happy. 

I have played with him, don't get me wrong. And he doesn't seem to mind at all that I organize and build with his legos instead of playing. A recent lego time ended up being 12 hours in 2 days of constant organizing and building. If a piece is missing, I'm extremely frustrated, and I hesitate to use another similar sized piece in another color, because that's not the piece that belongs there. It is frustrating to me, beating myself up inside because I can't seem to move beyond that. 

Board games I can do. Board games have definite rules. There isn't a lot of creativity required. Games like charades I hate because you have to do a lot of imaginative thinking, and the spotlight is on you when you are acting out a word. I don't like that very much. But a board game with rules is something I can get behind. 

We have played a lot of board games. Brody likes that. Sometimes though he gets upset to lose, even though in Candy Land you lose and win in one card's draw, so it goes back and forth. Eventually he wants to play pretend walking around the board. Or with The Game of Life, he likes to drive the cars around the board playing after we've played a game. (He probably wouldn't play the game for real if I didn't insist on it, honestly.)

So anyway, I have a lot of frustration over this. I have noticed my son prefers the company of someone who will play with him, which hurts a little. Some people might think that I'm simply being selfish, or that I'm an aloof parent, or disconnected, or something. Honestly, I DO WANT to play with him. I just do not have the slightest idea what he wants from me. If I can get him to direct me in what he wants me to do, thats ok. But most of the time it ends up him wanting me to do some pretend stuff, and I find that hard. Most of the time he does the talking which is nice. He is an extremely talkative boy, always talking, always in motion. So I think I give myself too hard of a time over this. Sometimes he just wants me to be there saying "Yup, Uh Huh, Yup, Okay...". Which IS better than nothing. 

Can you imagine not being able to play with your child? I mean, imagine the feeling you have not being able to play with your child because you are sick. And remember, you know being sick is temporary, and when you are feeling better you can go back to normal.
For me, it is like I'm "sick" all the time. I try to avoid it. I try to do something else, like housework, or blogging, or reading. 

But I can't help the nagging in my heart that I should do more. I know my son knows I love him. In all other aspects, I am emotionally and physically loving, connected and fulfill his needs and snuggling and all of that. I know that is probably more than some Aspies are capable of. I remember pre-diagnosis I was told I couldn't have Aspergers because I do express love and affection. I feel love and affection very deeply, yet it is a very selected thing. I have always had a deep bond with children and animals, and definitely I allow my parents to be "human" despite all the reasons a person COULD be mad at them, I obviously have an unstoppable bond to them. My husband is absolutly adored and I cannot live without his closeness and affection. I crave it almost all the time. My brother is almost like a child to me (I was 11 when he was born, and from both my love for him and my already strong bond with children I feel at times I was a mother to him as much as our mother was - a responsibility I choose/took, NOT one that was forced upon me.)

But I DO have Aspergers. I DO have difficulties with social issues and relational issues in all of the above persons. Now try adding people I don't have a close affection for, and sometimes the waters get a bit murky. I have a hard time with other family members. I have a hard time with people who SHOULD be bonded to me, but do not act like it. I have problems with people I thought were better when I was a child, and have "let me down" as I realize their "humanness" (I know I made that word up). I have problems with people who do not seem to understand my need for space and autonomy. I have trouble with people who "play games" with relationships, cause drama, give the cold shoulder, etc. I have HUGE problems with people who blame others, when the OBVIOUS cause of their problems is themselves. Don't get me wrong, I probably do some of these things to others without realizing it. When I'm emotional sometimes I just don't realize the hypocriticalness ... Maybe that's why other people do it too. 

Anyway. Play. I have a lot of frustrating surrounding this inability of mine. It's not that I have "forgotten" to play, but rather that I honestly don't think I ever knew how.

Crab Apple Jelly

Today I tried (for the 2nd time) to make crab apple jelly.

The first time I didn't have any real way to strain it or drain it, so it ended up all screwed up. It's ok, I have MORE than enough crab apples to screw things up with. 

Today went much better. :) I've got 8 small jars all done. It is a time consuming process. It is a labor intensive process. And no matter how many I make at a time, it doesn't seem to make much of a dent in the apples I have. So, I know that it is going to take a long long time to get this all to work. ;)

The last batch I did based on a youtube video. It worked just fine, and so far 5 of the 6 have self sealed. They are more liquid looking than I had hoped, maybe I didnt boil them long enough, or maybe I do need to add some pectin. I didn't add any pectin in the first test batch, and it turned out just fine (so it appears - it is much thicker in the jars)

Anyway, it is hard to do this. There are so many apples, I am easily overwhelmed by how large a project this really is. I'm glad for the "shortcuts" but I just hope all the shortcutting actually does make good jelly. My overwhelmed self wants to just cook them all at once and get it over with, and yet, I know I cant really get a good result that way (besides it would take longer than the day is long).

Patience. I don't have a lot of it.

Energy

 From Karla's ASD Page on Facebook:

Diet, Breakfast, and Taking a Risk

I'm taking a risk posting this, because its not really anything to do with Aspergers, except for this; I have some strong beliefs. I make decisions about things and I am very hard to move on those things. This is one of those things. Diet is a huge thing for everyone and we don't even realize how badly we are screwing it up! I posted this on another blog of mine, and so I'm reposting.

hey you, yes, YOU. look at your breakfast. look at it again. doesn't it look a bit small to you?

sure, you're trying to lose weight. you're trying to get healthier. maybe you are even *gasp* dieting!

look at your breakfast. the answer could be in your breakfast.

breakfast is just that: breaking a fast. and the #1 reason we go looking for food is because we didn't eat enough of it when we broke our fast. i mean, people call it the most important meal of the day, and we eat the least amount of food ? that doesn't make sense!

I've got some knowledge about "switching" the way we eat. basically, if you eat more in the morning, (like a dinner sized serving) you will have more energy throughout the day because you are running on a full tank. eat a "normal" lunch and a "breakfast sized" supper. this way the majority of your calories are in the beginning of your day when they will be needed to run your body all day, instead of at the end where they are just going to be sitting in your stomach or intestines all night long. 

don't get me wrong though, i STILL fall into the "normal habit" of having more at supper and the regular bowl of cereal in the morning. i don't know why, but its just the way we do things in this country or something. but OBVIOUSLY, the way we do things in this country isn't working, so why not try the OPPOSITE of that? 

a good addition to breakfast? oatmeal. that stuff is a POWERHOUSE food. but of course you know that. ;)

try this out:

http://www.chiphealth.com/health_topics/podcasts/3ABN_MP3/CH011810-26min.mp3

now, yes, its based on Christian radio. i wouldn't call it a sermon or anything.

but this guy has got the best information on health and diet that i have ever heard. he can seem a bit "radical" because the things he teaches is so different from what is said in this country. (remember, money talks, and industry and bad health has money, theres no money in having good health!)

but maybe, looking at the way things are in the country, we NEED to hear something different, something (again) OPPOSITE of what the lifestyle in this country is promoting. 

call me crazy, but if the lemmings are all swimming out to the ocean and drowning in their "american diets" maybe its time to change something drastically. 

seriously. take some time, i think its a half hour, at some point, and listen to this podcast. phenomenal.

Bayfield Apple Festival: Crowds, And Things So Pretty It Hurts

This weekend we went to Bayfield WI for the Apple Festival. It was really nice, although I have to say next year we will be going the week before, (not to mention going there in the spring instead of fall!) because the crowds were ... well, they were crowds. 
My husband made the comment that all he could see is me ahead of him zigging and zagging around. He apparently is the kind of person who will just walk in a straight line and wait for people to move. I'm apparently the kind of person who doesn't see the crowd of people when I'm in it, I see the space between. I see the opening, and I head for it. This is how I can walk RIGHT BY someone I know, and not have any idea that they are even there. So, if I have walked right by you in a crowd somewhere, tap me on the shoulder. I'm not ignoring you, I just honestly don't see you! ;)

This thought came out of nowhere for me. I think this is something I have definitely had happen to me all my life. INTENSITY of feeling. INTENSITY of beauty experienced. 
Apparently Bayfield is at peak fall colors. Now, I have had peak fall colors up here, and we have been other places (like the north shore of Lk Superior) for the fall. This year I spend over an hour on a half hour drive to and from work because of the colors up here. It was wonderful.

But we get to Bayfield, and its FULL of deciduous trees. Oaks. Maples. Different varieties of things from what we have here, and all in "full bloom". There is an iron bridge to walk over, and that area was amazing. After seeing the festival, we found the walking path UNDER that iron bridge, and let me tell you, it was AMAZING.

I could have lived there. I could have DIED there. It was SO BEAUTIFUL, SO INCREDIBLE, SO AMAZING, SO PERFECT, SO HEAVENLY, it HURT!!! It literally hurt me inside. It was all achy. I literally could have stayed there my whole life. I just can't believe how beautiful it was. I took all kinds of pictures, but still wasn't satisfied. It was cold, and my camera fingers were freezing. But I just wanted more. I'm not entirely satisfied with the pictures I got. It was just SO BEAUTIFUL. Is this an aspie thing? I mean, I have read so much talking about how we feel things more intensely than others sometimes. This might be one of those times. My son and hubby didn't seem as affected.. They were "leaving me behind".

I mean, as a "photographer", I know we all experience this. But this was above and beyond anything I have ever experienced. The whole place was GLOWING. I just can't get over it. If I could move right now, I would be in Bayfield tomorrow.