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.
Tuesday, July 28, 2009
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.
-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.
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.
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.
Subscribe to:
Posts (Atom)
