Living With Asperger's Syndrome--inside my head.

We have been seeing the anxiety counselor for a while now. I'm not sure we are making progress, but we are all busy doing what she says. We are doing desensitizing exercises with a series of issues DD has. We are also practicing communication skills in a controlled time and manner, rather than just one or another of us deciding that he or she needs to have a discussion at some random time when everyone may not be prepared.

I'm trying to be patient.

The counselor at JSSA soon gave us the bad news. My daughter was not responding to counseling. We were referred to the Kingsbury Center for testing. There we were told testing would probably be a waste of money. Not happy news, but we were glad they didn't just take the thousands it would cost and tell us after.

However, the Dr. there spent many hours searching for other resources for us to try, and we are now on a waiting list for services from specialists in anxiety and phobias who work with people with Asperger's, and tentative plans for further counseling with another service later to prep her and place her in a further education situation when she graduates from high school.

At the moment, I'm trying to keep my own anxiety under control. The stress is wearing me down.

Whew! Began Life Skills counseling at JSSA (Jewish Social Service Agency). This is mainly for my 17-year-old, but we can all use guidance on how to help her.

I was relieved to find that I've been doing fairly well in my approach to helping her toward independence, and I was glad that the counselor pointed out to my husband that doing things for our daughter was not helpful. And I absolutely grinned when the counselor gave her the lecture on "If you don't want to be told what to do, you have to do everything without being told." How many times have I told her that? She was furious that the counselor told her the same things I tell her. Very teenage response--which, while annoying, is also good since it is age-appropriate. How hard she will resist remains to be seen.

I will be thrilled if the counselor gives my husband more responsibilities, too. He is a great guy, don't get me wrong, he just leaves so much on my shoulders because he isn't comfortable with the emotionally hard jobs. As if I am.

Progress will likely be much slower than I want--when I want something done, I want it done now!--but I just have to keep busy with my own work while my daughter assimilates one new requirement at a time.

My daughter is failing to progress to independence. My biological clock is telling me in no uncertain terms that it's time for her to be out of the nest, and she is hanging on so tight I feel strangled.

DH and I went to a parent support group meeting, but I derived no benefit at all from finding out how lucky we are that she is doing as well as she is. We have DD on waiting lists for programs to help her, but she won't get in until someone else quits. It's going to be a long winter.

I've been having unidentified health problems for several years and am at the point that I don't have enough energy to do much except sit at my computer designing. Right now it's hard to do even that. I probably have some sort of deep-seated infection and a suppressed immune system.

I don't know how or if Asperger's has anything to do with this. I do know that my compulsive need to have a clean and tidy house is gone. I simply don't have the energy to care. On the other hand, my desire to be alone and to not have to deal with people is much worse. Dealing with people takes concentration and energy. I am so fatigued I cannot think sometimes, much less remember how to make polite conversation.

I am seeing a specialist and hope to have a diagnosis (and treatment) soon. It would be a huge relief to have the energy to compulsively clean the house.

UPDATE: I have now received treatment for a systemic Bartonella infection, and I feel much better! My joints are much looser, I have more stamina, and my mind is clearer. The house is still a mess, but I'm at least thinking about cleaning it...

Last year ended with my CafePress Shop a failure after a year of hard work, my fabric designs not selling, and me ill with a MRSA infection in my sinus. I happened to grouse about my problems on a message board devoted to greyhounds and several people suggested that I design fabric with greyhounds on it for them to use to make greyhound collars. So I did. My first designs weren't quite what they wanted, but then I created one that they they loved! I have since tweaked and refined it and offer it in 7 colors and now it is a steady seller! I just finished a collection of geometric fabrics featuring greyhound silhouettes, and will next create more designs based on the paisley stripe of the collar fabric.

I am not obsessed with my new creative endeavor, I hope! I do, however spend nearly every waking hour either working or thinking about my work. I probably work 10 hours a day 6 or 7 days a week, except when my body goes on strike (pinched nerve stopped me for a day or two this week). It's so exciting to have my work wanted and actually bought by people who then make lovely products out of it! Perhaps this is a Asperger's trait. I really don't know and don't care. The relief of having some money coming in (I have yet to make an actual profit) is euphoric, and I will take the energy and run with it to build this new business!

I've added some of my products below:

I suddenly need to have the final number I write in Sudoku puzzles to be the #9. Irrational! I also keep rolling up my sleeves even though it is too cool for that. And I keep putting my hair in a pony tail and then taking it out again.

I currently (Sept. 26) have a fabric design entered in a contest. I spent about 50 hours over 3 days creating it, and I had to make huge compromises on the design due to not having enough time to do what I wanted to. It is in 7th place (out of 70) in the first round, so I hope to make it to the final (top 15 will be in it).

This sort of thing is very stressful for me!

PS: My design came in 3rd in the final round.

At right is a detail of my contest submission--the contest requirement was that the design include spoons and flowers.

I just realized that I'm managing very well this summer. I'm working hard at my business venture of creating designs to sell using online print-on-demand services, and I am managing to juggle the creativity and the promotion without too many mental meltdowns! The house is a mess and I barely even notice--it doesn't bother me enough to make me stop working to clean it up very often, which is astounding. I'm very focused on my work, but not to the point of obsessing. I'm just really enjoying it. Granted, it would be nice if it were to begin generating income soon!

My mind is clear, I am doing what needs to be done and, and I'm not obsessing about what is not getting accomplished. I must be dong something right! Probably several things. Such as eating right, sleeping--or at least resting--on a regular schedule, and following my exercise routines.

I do have to stop and work up my daughter's school curriculum for the coming school year (we homeschool). Tomorrow, I will stop tomorrow. Really.

When I was a child I thought everyone else was weird, and that they should conform to my view of the universe. These days I would rather be happy than right...

Step #1 in living well with Asperger's has been to learn what overwhelms me. This has taken years and is a continuing process.

Unexpected physical contact is like being touched with a live wire. Not quite literally--it's hard to explain. There is usually little or no actual pain, but there is the overwhelming focus of attention and the feeling of a burst of static and blankness in my brain.
I have found in the past that people don't tend to respect the simple "I don't like being touched" explanation--some seem to think they should touch me more so I will get used to it...
Since we learned about Asperger's Syndrome, people who know are much more respectful of my need not to be touched.

I hate noise--I don't even listen to music anymore.
The sounds of vacuums, power tools, and appliances are irritating, but by the time I was a teenager, I had learned to tolerate most of them. Even so, when noises stop, I physically sag with relief--even if I had not consciously noticed them when they were occurring.
The background whine (carrier wave?) of TVs and radios/CD players rarely bothers me anymore, but that may have more to do with my hearing not being as good as it once was than that the sound would be less irritating if I could hear it.
I normally avoid situations where I would be subjected to much noise for any length of time, and if I start to feel twitchy when I am in such a situation, I move to a quieter spot or even leave.

Messy or Tidy? I recently read that people with Asperger's are usually at one extreme or the other. I'm tidy, my daughter is messy! She is required to help me keep the shared areas tidy (my husband, too), but her room is how she wants it (and my husband's "spaces" are strictly his business).
Our household became much more pleasant when I learned to warn my family that the mess was getting to me. The interesting thing is that in realizing my need for tidiness and making others aware of how upsetting messiness is to me, I have been able to be less obsessive about it. When something isn't the way I want it, I can tell myself that it's still ok, that the person who did it that way has the right to do so. ---Even so, Lego projects are banned from the dining table!---

I don't know anything today. I can't focus, can't think, can't remember. Anything and everything makes me want to scream, or cry, or bang my head against a wall. Just trying to write this my eyes keep jerking away from the screen and I can't breathe.

From my reading, it seems that if one has Asperger's one has obsessions. I used to become obsessed with one thing or another. As a child I was obsessive-compulsive in some of my behaviors, and as a teen I was certainly obsessed with "The Lord of the Rings" and "Star Wars", just as my daughter is with "Speed Racer".

When I began to question my behaviors and to try to improve my family life after my daughter was born, I realized that my obsessive behavior was causing my manic-depressive mood swings. I found that if I stopped myself from becoming so enamored of a subject that I became euphoric, then I did not suffer the crushing depression, either. I still tend to experience mild depression, but nothing like what I had when I was obsessed with something.

The only negative side to controlling myself is that life overall seems a little dull, now. I no longer have bursts of energy that allow me to go,go, go and get major projects done with ease. I have trouble gauging my moods now. I spent most of my life at one extreme or the other, and the middle ground is a strange place to be.

I'm not tempted to "let myself go" and become obsessed. It is not worth the cost.

Many people with Asperger's are good at math and science, and are very logic oriented. I'm an artist! I failed Algebra 2 (my teacher gave a a passing grade that I had not earned). I never got beyond high school biology. I was 27 before I really understood the concept of analyzing anything.

I discovered Sudoku puzzles about a year ago and had to read "Sudoku for Dummies" before I could do any but the most simple ones. Now I can do almost any of them, but only if I do some every day. If I stop for a while, I have to wake up that part of my brain again by doing simple ones and working my way back up to hard ones--it takes about a week to get back in "shape".

Running my online business is incredibly frustrating sometimes because I do not understand computer and internet stuff and can't seem to learn much. Even learning to do these Squidoo lenses was hard and I needed help. A couple days ago I tried to build a Facebook business page; I managed to create an account and then got stuck. Even the step-by-step instructions are gibberish to me.
NOTE: I have since managed to make a FaceBook business page and accidentally made a personal page, too, while trying to fill in the business page info! Two pages are not allowed by FaceBook and should not be possible to do accidentally...? I'm leaving both there until FaceBook tells me what to do about them! I don't know what to do about removing one or the other. The business page doesn't seem very useful.

I have a fairly high IQ, but sometimes it only serves to make me painfully aware of my weaknesses!

I really don't understand why I can do Sudoku puzzles with ease and find Mastermind mind-numbingly simple, and then have a week or more when even simple Sudokus take me an hour to do, and Mastermind will frustrate me to tears. I can FEEL my brain not working. I can feel my brain failing to hold onto the information, failing to follow the steps that I know I knew before.

This is too weird! I completed a book of sudoku puzzles and then erased some to do again (rather than buying a new book), but I can't do them! I get to a certain point and there is no next step. I check the answers in the back and I have made no mistakes, but I can't find any next move! Twilight Zone! The universe has shifted and I didn't shift with it! This sort of thing is VERY disturbing to me. I can only suppose that I have forgotten one of the rules (the logic often escapes me, so I rely on memorizing the steps). The problem with that is I can't figure out what it is that I don't know. What is wrong with this puzzle? What am I not seeing?

WHOO HOO! Two of my siblings tried to solve it and got stuck, too! So it's not just me! Maybe I made a mistake the first time or else put the numbers in in a different order so that it didn't come to this impasse.