=\

I haven't blogged in a while. The truth is, I am in a bad place right now. I feel like it falls on me to take care of everything and everyone. I have to run J to this doc appointment and that doc appointment. I have to take care of the baby because he only says mama so J just hands him to me, whether I am trying to sleep or not. I am fine when we are out, but as soon as we pull into the driveway, I am aggravated, overwhelmed and miserable. We live in a place that I can no longer call home and it sucks. I get a *little* peace when I am in the shower, which is why I have showered quite a bit the last few days. Everything feels like it is spiraling out of control and not just in my life. My latest issue is that I cannot get a job and provide for my family. J had no pants that fit him. Thanks to 2 special friends of ours, he has some pants now. I don't know if they even know how much I appreciate the gesture. Christmas is coming up.. I have always gotten weird/sad around Christmas. I like to give. Yet, I find myself unable to give anything. That is what hurts. From the time I was a teenager and cried outside of a store because I didn't want my mom to spend the money she didn't have on me until now, I have always felt terrible when I couldn't provide my entire family with the Christmas I feel like they deserve. It kills me inside to be unable to spoil the crap out of them and my friends.

=\

So, I am still very aggravated and annoyed. I think the part that bugs me most is that I love J so much and it is aggravating to be unable to fix his depression and his aggravation. When I had money (or credit), we were traveling to this convention and that convention and J was happy. Now that we are broke, he is miserable and it is beginning to make me miserable. I am not Super Wife Mommy Woman. I'm just me.. =\ It feels a lot like it is because I am in this place in my life that it makes him unhappy. But, money does not grow on trees so I don't know why he can't give me some slack and consider what he is doing to me whenever he decides something without asking me.

Fed Up

I am getting to the point where I am just fed up. J wants to do everything his way and not take into consideration anyone else's needs or wants. I cannot be the one who is constantly doing everything for him and neglecting myself. He has rearranged my life, my room, my everything and I don't have any control over it. Yet if I want to ignore him for a day, an hour, a shower, I am not being supportive. I am so sick of this. I told him to leave the things I had in the closet in there. He didn't listen. He turns my life upside down and not in a good way. Then I am blamed for any/all of the bad. How dare I want to do something for me. It is getting a lot worse lately and it is really affecting me and my mood. I don't want to be drug down with him. He doesn't want to help himself be a better person so why am I bending over backwards to help him?

The First Doc Appt

The doctor's appointment has come and gone. It was very interesting. Since it is the first time the doctor saw J, he wanted to do his own assessment. I can honestly say that if he did any less, I would be upset. He threw out a possibility of what J might have instead of AS.. "Avoidant Personality Disorder" and Social Phobia. We are reading up on it now. However, many of the readers here, if they are someone with AS or know someone with AS, have had a light go off in their head when they read about AS and think of themselves or the person. Well, AvPD does not make the lights in our head go off. There is so much that just does not fit. When I read about AS, I can pick out specific things that J does that points to AS. I can do this with AvPD but only after pulling it apart and thinking about things in a different way. I cannot get into J's head in order to know what he is thinking or feeling, so I can only say my own observations AND what the literature says about people who are in relationships with aspies. AS just makes the most sense. I can literally read a book about Asperger's Syndrome and nod and say, "Yeah, that is EXACTLY what is going on."

Also, a little note about J's social abilities. Even if he could get over the anxiety (for which he has new medicine for), he lost 35+ years of being unable to socialize properly. So, he doesn't have the proper social skills. This is a long-term rehabilitation that I would like to see happen. I mean, hopefully nothing ever happens to me because I, essentially, take care of J socially, outside of the internet. Plus, our son needs to be able to learn by example in certain social settings. I have to know that they can both be okay. His older kids have been around NTs and people who can socialize, so I am not worried about them with this. I can only work on this with him if he wants to, though.

Tomorrow: Doctor

Tomorrow morning, we finally see a DOCTOR!! We have heard that he has experience with people with AS. I am hoping to get J's depression under control enough for him to function and be happy. I know that being away from his older children is a huge reason he is depressed but it is different. When I need something to happen, I don't become so depressed that I don't want to shower, etc. I go out and grab what I want. It gives me a reason to do this or that. This depression has come around mostly since our "Moving to New England" deadline came and passed while we sat tight in NJ, unable to make the move. We will get there eventually, but to someone who has depression, it seems like the end of the world. And, if he is happy down here and doing things with Jareth, he probably feels guilty on top of the stress of the separation. Well, here's to hoping the doctor can help J feel better in life.

Life Goes On and On and On...

I have not blogged in a little bit. I am not as diligent as my husband is about blogging, even though it was my idea. Anyway, to update you with what is going on with us...

J is seeing a therapist. She is delightful to talk to about what is going on with J. We have hope once again. She has given J a homework assignment, which is to reflect. That means he has to repeat back to me what he thinks I meant, not what I said. He has been doing pretty well so I begin to wonder if I was right about selective listening lol.. now that he has to stop and listen, he understands what I am saying. *accusing stare*

I had a bad day yesterday because I want to be able to support my family but it is so hard to get things going. I can't even get a regular retail job and I have a Bachelor's Degree!! However, after a nice, HOT shower and some dinner, I felt a lot better. Today we went to the regular doctor's office to get J help for his other ailments like his back and his allergies. We have an appointment with the back doctor (not the chiropractor) and will be getting J's blood work done. So, we are in a limbo, but next week, we go see the psychiatrist finally!

That's all for now. =]

The Sun is Rising!

I am trying not to get my hopes up, but it really seems like the therapist we saw the other day understands J and Asperger's Syndrome. I have felt like we got the ball rolling before, but that went NO WHERE! The other people we have seen never really seemed to try to build a trust with us, or they did and it was just superficial. J's new therapist is awesome! She is a fun person to talk to and we can have an actual conversation with her about AS. The nurse practitioner we saw before was reading a paragraph about AS when we were trying to discuss it with her. Anyway, I am hoping we finally found someone (or some two.. the other being the psychiatrist who has had experience with Aspies) that is understanding and genuinely wants to help. YAY!!

Surrounded By Idiots

I thought about something today. An Aspie needs a good support system. He/she needs a person or people to encourage them to pursue whatever he or she wants to pursue. Earlier today, I was discussing J's AS on a forum. It occurred to me that J had a career he wanted to pursue in fashion design. However, his "mom" talked him out of it. Now, he sews costumes. I can't help but wonder if he would be successful in a career of being a fashion (or costume) designer had he been encouraged (and not discouraged) to go after his dream. Now, we will never know. I only wish he had someone with half a brain (or heart for that matter!) for a mother instead of what he wound up with. Then maybe instead of blaming J for not having a career, she would be proud of what he accomplished. At least J is no longer surrounded by idiots and has a real support system now in me and our friends.

We want to go to the zoo!

Who knows what today will bring? I asked Jareth (6 months) if he wanted to go to the zoo and he got all excited and screamed. He doesn't know what the zoo means but he wants to go! LOL... the problem is trying to get J out of the house to go to the zoo. I understand he hates to leave the house but this is one of those things he has to work on. The world does not revolve around J. A parent's world revolves around the child(ren).

Inspiring Outlook

I must say, I really needed to hear something like this..

On facebook,

Vin Diesel

Ten years ago I was a bouncer, a security guard at a nightclub. I can remember articles in New York at the time, boasting that the nightclub was the safest place to be… if only subways, streets, and restaurants had that level of security and protecti...on, that assurance that you could enjoy yourself without worrying about your safety. New York was different then.

“Who you are now, is not who you will be 10 yrs from now… who you will be 10 yrs from now... is up to YOU.”

Thanks, Vin! You have lifted my spirits!

The Uphill Battle with AS, Money and Inadequacy.

My optimism is wavering. I have been trying for months to get a decent job. In this economy, I know that my family is not the only one struggling. However, it does nothing for my confidence. I apply at places that have training programs for college graduates only to get emails saying I did not qualify. Oh, okay. That makes sense. Right. But, anyway, I can't help but feel inadequate. I am supposed to be the bread winner for my family but I can't make any money if no one hires me. I have started to think that going back to school to finish my degree was the wrong move. I truly hope not. All I can think is that if I never went back to school, I'd still be working a low-paying hourly job, but I'd still have money coming in. I know that even if I can find a decent job, I will need to get J back into the doctor's office and make them become advocates for us to get him on disability. I just can't believe that they were the only ones around here that could help and they turned us away last time.

Feeling Like A Single Mom

In many ways, I feel like a single mom. I have 2 kids to take care of (my husband and my son). It is going to be extremely hard with only 1 income, but I am hoping to go back to the doctor and go through a more extensive process of getting J diagnosed with AS. Then, we will be applying for disability once again. I can't do this alone, and the government should not make it so someone who probably has low-functioning Asperger's Syndrome cannot get assistance. It is absolutely ridiculous.

You Call Yourself a Mother?!

I don't know how some people can call themselves mothers. *trying to calm down* Yesterday, J gets an email from this.. "mother" of his.. and it says that J blames the family for everything (what?) and he should make amends.. first the eff of all, HE has done NOTHING wrong.. They alienated him because he has a SOCIAL DISORDER! So, he should apologize for that? Second of all, we were supposed to meet and talk about these problems to put it all behind us and the person with the big problem.. the "mother"'s husband refuses to meet with J. So it is the husband with the problem.

When his Auntie Marie died, we drove up to the funeral.. not just that, I had class the day before the funeral so we drove ALL NIGHT without sleeping to get to RI for the funeral. We went in. Those cold-hearted people that the "mother" likes to call a family didn't even do that. The funeral parlor had it set up for a viewing but they didn't care enough to have a ceremony for her. Basically, they just met up and brought her to the plot.

Then, we really needed to get some sleep. The only person who even gave a crap was J's ex-wife!! She told J that he can't just drive back without sleeping somewhere and I could hear in her voice she was debating letting us sleep at her house but she couldn't do it... I have more respect for her than I ever will have for that "mother". But, yeah, J has the problem? Screw you!

Being Pulled Apart

I am between a rock and a hard place. I feel like I am being pulled two opposite ways. On one hand, I know how important it is for J to be near his boys. On the other hand, I need to be able to support my son Jareth and myself (and J). Since there are NO jobs in Rhode Island (believe me, I probably applied for all that was up there), I feel like I need to move to where the jobs are. I feel so terrible because this means going the opposite way to the way we should be moving. I am really trying to do the best for my family overall, that includes my step-sons. However, I just don't see moving to Rhode Island as a possibility at this point in time. It is a very depressing thought and I am tearing myself up over it. It almost feels like I am putting Jareth first, over everyone. In a way, I am. But, I know that my step-sons are well cared for and have their needs met, at least financially, where they are. They need their father though and unless J and I have a temporary long-distance relationship, I don't see how we are going to make this work. What's worse is that J can't just go out and work with his Asperger Syndrome. His social anxiety makes it very difficult.. not that there would be a job for him anyway. The problem is that he was denied disability even though he is disabled. It's freaking crap! =(

Alone

Well, the backlash has happened, but it has not been full-force yet. I get a couple texts about my previous blog that I cross-posted on facebook and someone on my friend's list told one of the people about the blog because she is friends with her. So, I had to prune my friend's list. I have to wonder if she was read the entire blog or just the part about her because her problem was that I mentioned her. I told her that it was actually examples of what people who live with Aspies go through. It is meant to make people feel like they are not alone. We are not alone, but sometimes it sure does feel like it.

Acceptance

I would like you all to know that J and I are not married just yet. We are having some resistance from my family though because J can't get a job for the social issues with his Asperger Syndrome and back issues as well as being denied disability. This is what I have to say about it.

It was nearing Halloween 2006. I wanted an awesome costume. It was between Arwen from Lord of the Rings and Slave Leia from Star Wars. I ultimately chose Slave Leia. This led me to meet J and many other geek costumers on MySpace. By May 2007, I had my ticket to go to my first convention. It was pretty awesome but it wasn't until later that summer when we went to Wizard World Philly. Here I met the amazing people from Garrison Carida and I finally felt that I met "my" people. This is a big thing since I had always kind of been a loner throughout my years in school.

Fast forward to being in the costuming/conventioning thing for a while... we were invited to be at the opening of the Star Wars exhibit at the Franklin Institute in Philadelphia. Not only that, but we were to perform in front of everyone. It ranks as probably one of the best times of my life. The only thing -- my family was not there. My brother, Chad, came to see us on the morning of our big performance. I invited my sister-in-law (SIL) to bring the kids because I was really excited and finally, finally, they could see me in my element and meet a bunch of my fellow costuming friends. However, while in Philly, I texted my SIL to ask her if she was going to come and I got a response that said no, her friend was taking her out for her birthday. I thought to myself, she could easily come and then go with her friend or change the day that her friend took her out, being that my performance date was not her actual birthday. Feeling disappointed at that point would be an understatement.

Like I said, my brother Chad did show up to watch the performance and to check out the exhibit. He got a call or text from my other brother Roy whom I thought was at work since it wasn't a regular day off for him. He was in Philly going to a Flyers game with my dad. I wondered why they were in the same city yet couldn't drop by to see me. Again, that was just another thing that I found hurtful.

Now, a couple years later, J and I have a 4 month old and are planning to get married August 15th. I told my family and they did nothing less than FREAK OUT. I don't understand their logic when they say that we shouldn't get married. Is having a child with someone not a bigger commitment than signing a little piece of paper?

What I find most hurtful about them not accepting J is that it is like they aren't accepting a part of me. They won't accept the costuming geek inside of me that has been wanting to come out for all my life. It was a piece of me that I never knew I had, but I finally found it and found myself. They constantly make fun of J for being a "jedi" and my mom is always telling my nieces and nephew that "jedi" aren't real. I guess what they don't realize is that whenever they make fun of J or say something negative about him costuming, they are also doing that to me. I had my first professional-quality costume before I met J. It just so happened that it brought me to meet him.

Another reason I wish they would accept him (and me) is that I have a son with him. I am making a family and a life with J no matter what. When I was younger, I was very close to my grandmom. She died when I was young, but I made a promise to myself that I would be as awesome as she was to me to my own family. My greatest dream has been to be a mother, to be happy and to find someone who would treat me like gold since my grandmom was always surrounded by mean, abusive people. J has helped me fulfill all of those things, yet I still meet resistance from my family.

So, my message to them is simply: While we may not always have the best of things, J, Jareth and I will always have each other and be happy. Jareth will grow up in a loving home with two great parents. I am living my life to be happy and to fulfill the legacy that my grandmom set forth. That is the path I have chosen. If you can't accept that and can't accept J then you can't accept me.

Some Reality For You

Today was a bad day for J. He was very upset and anxiety-filled all day. We are in the process of moving back to his home state to be closer to his kids. However, that means finding jobs up there when there are none and somehow finding houses while lacking the funds to pay for it. It is a rough time but we are trying to make it work. J has been upset all day because he does not like having to leave the house for a job. This naturally gives him anxiety. Like I said in a previous post, even with anxiety medications, it did not help. It is just one of the things we deal with.

I find it difficult to handle my own emotions when J is like that. We struggle on days like these. I worry that his mood will bring me down or will affect our 4 month old son in the future. However, everyday is not like this and by night, he was more relaxed and the household itself felt calmer. I try to understand his feelings and moods but I can't neglect my son's or my own. All I can hope is that tomorrow is a better day.

The Doctors' Roles

Obviously for many years, the doctors treated J for things he did not have. Before he moved in with me, he was still going to the ADD Clinic for his monthly prescriptions. I went with him once. The appointment went a little like this...

-How are you doing J?
-Good. How are you?
-Here's your prescriptions.

We were in the waiting room longer than we were in the doctor's office! When he moved in with me (and out of state), we had to go through an intake process. This consisted of a semi-structured interview in which I had to interject because as we all know, an Aspie says the bare minimum. It was pretty pointless as that guy just wanted J to come back for some "talk" therapy, just to get thoughts out. The problem with that is talk therapy is not in J's interest and he would rather use the internet as an outlet, where he could be in the comfort and security of his own home.

After the intake process was over, we were assigned to a nurse practitioner who could prescribe medications. She automatically assumed that what the previous doctors diagnosed him with was correct and continued him on those medications. We fought tooth and nail every step of the way to open her eyes up to Asperger Syndrome. One time while J was talking and trying to describe something, I saw her look up AS in her little cheat book. Some listener! I am not an expert but in my college studies of psychology, she broke every rule. Heck, she couldn't even give J her attention for half an hour.

Finally, she spoke with the doctors of the practice and they all agreed that he had AS. I guess they just figured if we did all of this research, we must know what we were talking about. I told her countless information and what I dug up with talking to J and his mom, etc. It may not have been thoroughly tested, but it was a diagnosis... FINALLY!

This was not the end of it though. As time went on, she was using J as a guinea pig with his medications. She would give him samples of medications like Seroquel. Since J can be the center of attention at sci-fi and comic book conventions, she saw that as the ups of Bipolar Disorder and the depression as the downs. She pushed Seroquel on us but I would not let J take anything that I did not research online. The nurse told us it should help J sleep. Well, the internet said it treats schizophrenia and bipolar. I presented this information to J and he was done. His faith in doctors and the medications they prescribed was finished.

The next step is something J nor I would ever suggest as it is a risky and dangerous move. J quit taking his medications cold turkey. This was against my advisement since I knew it had the potential to be dangerous. However, I put him on a multi-vitamin and once he was "detoxed" he was doing so much better.

I cannot claim that it was all the medication making him a "nutcase". He was in a bad marriage for years and that put him into a depression. All of this was happening as he became more comfortable as a divorced man. I liken it to this: For all of his life he was put in a box. The people surrounding him kept him in there and he just re-enforced the walls for years and years. When he moved in with me, I began work to break down those walls. He still has the foundation of that but we are trying to make it into a structure better equipped for our society.

The Beginning

To fully understand our journey, I will start from the beginning of discovering Asperger Syndrome. Hopefully my husband J will be able to fill you in on what life was like previous to this as it is 35 years of mental anguish I was not part of.

Through the weeks and months of living with J, I was trying to figure out how the doctors thought he had ADD, OCD, social anxiety and depression. I will agree that he had social anxiety, but I didn't believe he had ADD at all. His first mistake was to go to an ADD clinic to get diagnosed. Of course he was going to come out with a diagnosis of ADD! Over the years, they just added a little of this and a little of that to his diagnosis and prescribed him medications accordingly. By the time he met me, he was on 4 medications and 1 of those was to combat the insomnia that was a side effect of another medication. Yet, the medications did nothing for him out in public. He was visibly uncomfortable, even on anxiety meds. I was beginning to get fed up with the lack of help the medications (and doctors) offered.

One night we were driving and I was discussing these things with him. I told him that it seemed to me that his symptoms were more like a "mild autism" than anything else. I had never heard of the autism apectrum at that point though so when we got home, we googled it. There we found Asperger Syndrome.

What's This All About?

There is a lot of research out there about Asperger Syndrome (also known as AS or Asperger's Disorder) and high-functioning autism. However this research and the resources based on that research are highly focused on children and early intervention. That doesn't help me being the wife of a 37 year old Aspie, and if you are reading this, I'm sure it didn't help you either.

I created this blog to go along with my husband's (adventuresofanaspie.blogspot.com) so you can see the black and white from him and all the shades of gray from my neurotypical perspective. Periodically, we will both review research or books to show you how they helped or didn't help us. We believe the adult Aspie has been very neglected, and we want to offer support, information and perhaps understanding through our unique relationship so you know that you are not alone.