Read this in a book and absolutely LOVED it!! I had to share:
Autism Does Not Define Me
Accept me for who I am.
Understand that I may not always get what you're saying.
Trust that God has me here for a reason.
I am an amazing human being.
Socially, I might not fit in with society's expectations.
Mentoring can help me along the way.
Don't forget that I have feeling even if I don't express them.
Opportunities for my happiness are indeed possible.
Educate and encourage me without prejudice.
Show patience and kindness along the way.
Never give up trying to "get" me.
Ostracizing me will just shut me down.
Take time to try and come into my world.
Defining me as my diagnosis ignores my essence and best qualities.
Emerging talents may arise when you least expect them.
Friendship and honesty is valued to me more than you can imagine.
I am in need of love and tenderness too.
Never let me give up, especially when you see my mood shift.
Expect the unexpected and watch me enrich your life.
Many people will read this and I pray millions will act.
Embrace and empower someone with autism today.
--- Karen Krejcha
April 8, 2010
Monday, May 6, 2013
Wednesday, May 1, 2013
*sigh*
My heart is heavy today. Even though the day started off well (I went to my rheumatologist for a 6-month follow up; everything came back normal, and I don't have to go back for another year!! -- and I lost 4 inches and gained 3 pounds in muscle!), I feel somewhat dejected. Money is just a non-stop issue, and I'm not making any headway in making money. Trying to get a job won't work; we'd have to put the kids in daycare, which would cost us a fortune and risk putting Ricky in someone's care who doesn't/won't/can't understand him. Stupid student loans are taking our income tax refund from now until forever, so no money there. Wages would be garnished to start paying them back as well. I've made a real mess of things.
Unsure about the business situation. I try and stay positive, but I can't help thinking that maybe this is not what I'm supposed to be doing. If that be the case, I have NO idea what I AM supposed to be doing. I don't get that little spark of excitement when I wake up, encouraging me to go out and "do." It's so unstructured and unpredictable that I get frustrated and confused. I don't know what I'm supposed to be doing when I don't have someone in front of me or when I'm not doing invites. I'm also getting very annoyed at people who focus on the money and the lifestyle of the business; there is so much more to life than making money and spending it! No one ever says anything about giving back to charity or doing any real "helping people" stuff. I get that helping people lose weight and feel better IS helping them, but that's not the same thing as serving.
Went to an autism workshop yesterday on social skills. There was a lot of good, interesting information, and I got some strategies to help Ricky when he gets a little older (they're mostly reading-based). But, the speaker kept talking about "them" (referring to autistics) and I felt really uncomfortable. When she tried to explain why it is that certain things are difficult for people with autism, she made it seem as if there was something wrong with us, that we should be pitied for our shortcomings. I know she didn't mean anything like that by any means, but I still felt like I was an exhibit at a zoo. Not that anyone was staring at me or anything.
Only one lady there knew I'm autistic as well (her son is on the spectrum, too), so there was no one there to relate to how I felt. Even after I told the presenter that my son and I are both on the spectrum, she didn't ask for my input into explaining perspective or anything else that might have helped the group better understand. I can't really explain what it was that bothered me so much; I guess it's just another one of those things where I didn't fit in, didn't know what to do, and just wanted to involved. Granted, I'm not an expert on autism by any stretch of the imagination, but I can offer examples and explanations for some things as I have experienced them. This is the first workshop I've been to since I was diagnosed; maybe that's what was bothering me. It wasn't just an abstract discussion about anonymous children with autism, or even abstractly talking about Ricky. It was specifically about me, something I could relate to, and I wasn't included.
Our support group meeting is tonight, and it will probably be cancelled afterwards. The counselor is pregnant, due in a few months, there haven't been too many parents coming (I've been the only consistent one I know of), and the building has been bought by another company, so the doctors currently in the building are moving their practices. Without a building next month and without a steady, regular roster of involved parents, we will probably stop having the group all together. We're supposed to decide where to go from here tonight. I'd like to go under the bed and hide.
Maybe I'm just having an existential identity crisis. Who am I? What am I? Who/what am I supposed to be?
Unsure about the business situation. I try and stay positive, but I can't help thinking that maybe this is not what I'm supposed to be doing. If that be the case, I have NO idea what I AM supposed to be doing. I don't get that little spark of excitement when I wake up, encouraging me to go out and "do." It's so unstructured and unpredictable that I get frustrated and confused. I don't know what I'm supposed to be doing when I don't have someone in front of me or when I'm not doing invites. I'm also getting very annoyed at people who focus on the money and the lifestyle of the business; there is so much more to life than making money and spending it! No one ever says anything about giving back to charity or doing any real "helping people" stuff. I get that helping people lose weight and feel better IS helping them, but that's not the same thing as serving.
Went to an autism workshop yesterday on social skills. There was a lot of good, interesting information, and I got some strategies to help Ricky when he gets a little older (they're mostly reading-based). But, the speaker kept talking about "them" (referring to autistics) and I felt really uncomfortable. When she tried to explain why it is that certain things are difficult for people with autism, she made it seem as if there was something wrong with us, that we should be pitied for our shortcomings. I know she didn't mean anything like that by any means, but I still felt like I was an exhibit at a zoo. Not that anyone was staring at me or anything.
Only one lady there knew I'm autistic as well (her son is on the spectrum, too), so there was no one there to relate to how I felt. Even after I told the presenter that my son and I are both on the spectrum, she didn't ask for my input into explaining perspective or anything else that might have helped the group better understand. I can't really explain what it was that bothered me so much; I guess it's just another one of those things where I didn't fit in, didn't know what to do, and just wanted to involved. Granted, I'm not an expert on autism by any stretch of the imagination, but I can offer examples and explanations for some things as I have experienced them. This is the first workshop I've been to since I was diagnosed; maybe that's what was bothering me. It wasn't just an abstract discussion about anonymous children with autism, or even abstractly talking about Ricky. It was specifically about me, something I could relate to, and I wasn't included.
Our support group meeting is tonight, and it will probably be cancelled afterwards. The counselor is pregnant, due in a few months, there haven't been too many parents coming (I've been the only consistent one I know of), and the building has been bought by another company, so the doctors currently in the building are moving their practices. Without a building next month and without a steady, regular roster of involved parents, we will probably stop having the group all together. We're supposed to decide where to go from here tonight. I'd like to go under the bed and hide.
Maybe I'm just having an existential identity crisis. Who am I? What am I? Who/what am I supposed to be?
Monday, April 29, 2013
Disgusted
I'm feeling pretty sick today. I didn't sleep well last night, so I was up uber-early playing on Facebook. Well, before I get into that, perhaps some background:
We went to the Autism Walk yesterday, and it was a lot of fun. Only thing that upset me was that NOBODY came to support us. Dad was working (he's good), Trish could have come but was working in the yard, my sister - who knows. Even my friend who was supposed to be with us cancelled last minute. All the same, the Walk was worth it. :) I may start "working" (?) as a Parent Leader with the PEN Project to help support other parents during ARD meetings and understanding IEP and 504 laws, etc. I should be getting some more information about that soon. Moving on.
Ian and I were talking last night after putting the kids in bed, and he finally mentioned that he didn't think his parents had ever acknowledged Ricky's autism, even though I have posted and talked about both Ricky and myself on numerous occasions, as well as sharing various awareness posts. I agreed that they had not said anything to me, and since it's been 3 months since his diagnosis, they should have seen something by now. They haven't even called to talk to Ian since Christmas, other than to call on Easter Sunday. They didn't talk to anyone but Ian, and Olivia for about 2 minutes, and not once did they ask about Ricky.
We talked about how they seem to have really cut us off since Christmas, not calling to see about Spring Break, Easter, or graduation plans like they have every year previously. So Ian called to ask what their plans were for graduation (they have to come to town for graduation anyway for my father-in-law's job). His phone was charging, so he opted to use mine. I warned him that if he used my phone, they wouldn't answer, and sure enough, he just got the answering machine. He left a short message saying we were curious about what they were doing that weekend, and that it would be a good time to see the grandkids if they wanted. No return phone call from them on either phone.
I had posted on Facebook inviting them to join us for the Autism Walk; even though I knew they wouldn't come, I still extended the invitation. I didn't get a response from them. I mentioned that to Ian as well, and he expressed some hurt feelings about being apparently shunned by his parents. They don't like me, and I've told him that for years, but this treating Ian and the kids badly is not right.
So, I was a little upset when we went to bed, and I had trouble sleeping. I woke up around 3 or so, and since I couldn't get back to sleep, I hopped on my tablet and logged into Facebook. Out of curiosity, I checked to see if they even seen the invite, and I found out that Ian's father has deleted me as a friend AND posted on his page about how his stupid rotary club or whatever it is he's involved with had had a charity fundraising drive for special needs kids!!!
This asshole has NEVER acknowledged his own grandson's condition, deleted me from his page so I wouldn't see the post (although his page is public, so I could see it anyway), and then brags about how he's involved in raising money to care for disabled kids?!?!?!?! The hypocrisy is astounding!
I was so upset and angry last night that I didn't get back to sleep until close to 7; I was still half awake when Ian got up to get ready for work. He had woken up while I was awake last night, so I told him what happened; he told me not to stay up all night focusing on it or I'd make myself sick. I guess he was right; I WAS up all night and I feel like crap. I told Ian that I was done dealing with his parents at this point; he was barely awake, so I don't know if he really understood what was going on, but I'm so sick of this kind of crap from them.
I don't care if they never see the kids again; they haven't made any effort to form a real relationship with them, and if this is how his parents want to treat my babies, they can just fuck off. They have nothing to offer them, and they are definitely not providing a sound moral compass.
We went to the Autism Walk yesterday, and it was a lot of fun. Only thing that upset me was that NOBODY came to support us. Dad was working (he's good), Trish could have come but was working in the yard, my sister - who knows. Even my friend who was supposed to be with us cancelled last minute. All the same, the Walk was worth it. :) I may start "working" (?) as a Parent Leader with the PEN Project to help support other parents during ARD meetings and understanding IEP and 504 laws, etc. I should be getting some more information about that soon. Moving on.
Ian and I were talking last night after putting the kids in bed, and he finally mentioned that he didn't think his parents had ever acknowledged Ricky's autism, even though I have posted and talked about both Ricky and myself on numerous occasions, as well as sharing various awareness posts. I agreed that they had not said anything to me, and since it's been 3 months since his diagnosis, they should have seen something by now. They haven't even called to talk to Ian since Christmas, other than to call on Easter Sunday. They didn't talk to anyone but Ian, and Olivia for about 2 minutes, and not once did they ask about Ricky.
We talked about how they seem to have really cut us off since Christmas, not calling to see about Spring Break, Easter, or graduation plans like they have every year previously. So Ian called to ask what their plans were for graduation (they have to come to town for graduation anyway for my father-in-law's job). His phone was charging, so he opted to use mine. I warned him that if he used my phone, they wouldn't answer, and sure enough, he just got the answering machine. He left a short message saying we were curious about what they were doing that weekend, and that it would be a good time to see the grandkids if they wanted. No return phone call from them on either phone.
I had posted on Facebook inviting them to join us for the Autism Walk; even though I knew they wouldn't come, I still extended the invitation. I didn't get a response from them. I mentioned that to Ian as well, and he expressed some hurt feelings about being apparently shunned by his parents. They don't like me, and I've told him that for years, but this treating Ian and the kids badly is not right.
So, I was a little upset when we went to bed, and I had trouble sleeping. I woke up around 3 or so, and since I couldn't get back to sleep, I hopped on my tablet and logged into Facebook. Out of curiosity, I checked to see if they even seen the invite, and I found out that Ian's father has deleted me as a friend AND posted on his page about how his stupid rotary club or whatever it is he's involved with had had a charity fundraising drive for special needs kids!!!
This asshole has NEVER acknowledged his own grandson's condition, deleted me from his page so I wouldn't see the post (although his page is public, so I could see it anyway), and then brags about how he's involved in raising money to care for disabled kids?!?!?!?! The hypocrisy is astounding!
I was so upset and angry last night that I didn't get back to sleep until close to 7; I was still half awake when Ian got up to get ready for work. He had woken up while I was awake last night, so I told him what happened; he told me not to stay up all night focusing on it or I'd make myself sick. I guess he was right; I WAS up all night and I feel like crap. I told Ian that I was done dealing with his parents at this point; he was barely awake, so I don't know if he really understood what was going on, but I'm so sick of this kind of crap from them.
I don't care if they never see the kids again; they haven't made any effort to form a real relationship with them, and if this is how his parents want to treat my babies, they can just fuck off. They have nothing to offer them, and they are definitely not providing a sound moral compass.
Thursday, April 18, 2013
Progress
Ricky is moving right along with his vocabulary. We made french onion-encrusted chicken the other night for dinner, and when he looked at the bowl of onions Ian was crushing, he said "oh that smells!" and made a face. It is SO encouraging to see him making so much progress with his language, communication, and overall development!
I did a follow up appointment with the Burkhart Center a week or so ago, after they talked to his teachers at school, and we set up an appointment for them to do an observation of him for next week. I'll bring him in and they'll do a series of tasks to see how he reacts, so they can try and elicit the same behavior he is demonstrating at home and school. That way they can get a good idea of what exactly he is doing and how exactly we should respond. I'm trying to get a game plan set up for this summer once school lets out and his routine is majorly disrupted.
While I was there, I was asked how he interacts with Olivia, so I spent some time talking about both of them. Before I knew it, we were just talking about Olivia, and they think that she has some traits of Aspergers as well. They told me to keep an eye on her, just in case, but didn't think that testing would be necessary since I should be able to help her. During our support group meeting last week, I was the only one there, so we talked about Ricky and Olivia. The therapist there also asked me if I had any suspicions of Aspergers with Olivia, and I told her that I had talked to Burkhart and what they had said. She has actually interacted some with Olivia at some of the support meetings, so she has a better view of her behavior than Burkhart, who have not seen her. She agrees that there are some strong traits.
Since we will probably be moving Ricky to the other school next year, I figure I'll just wait and talk to her teacher then, explain my concerns, and ask that they keep an eye on her. Then we'll do testing if we feel it's needed. I just don't want to NOT test her because I "know" she has Aspergers as well to avoid labeling, then find out that she needs some kind of accommodation later in school and have to fight to get testing done first before anything can be done to help her. Not fair to her.
I'm coping much better with my Aspergers now. I finished that book on dealing with anxiety and found a lot of things that have helped me pay better attention to my triggers and reactions. Switching my anxiety medication to bedtime has helped me sleep better at night and wake up feeling more relaxed. I don't have that immediate sense of terror that the day is going to be a struggle. I didn't even realize I felt like that in the morning until it was suddenly no longer there.
I'm making the kids penny boards to help with setting chores and rewards. It will also help Olivia learn to add and understand money, since once you get the hang of pennies, you can start exchanging them for nickels, nickels for dimes, etc. I think this will be good for both of them. I still need to make a big visual schedule for us to use this summer, but I'll get busy on that next. One day at a time.
I did a follow up appointment with the Burkhart Center a week or so ago, after they talked to his teachers at school, and we set up an appointment for them to do an observation of him for next week. I'll bring him in and they'll do a series of tasks to see how he reacts, so they can try and elicit the same behavior he is demonstrating at home and school. That way they can get a good idea of what exactly he is doing and how exactly we should respond. I'm trying to get a game plan set up for this summer once school lets out and his routine is majorly disrupted.
While I was there, I was asked how he interacts with Olivia, so I spent some time talking about both of them. Before I knew it, we were just talking about Olivia, and they think that she has some traits of Aspergers as well. They told me to keep an eye on her, just in case, but didn't think that testing would be necessary since I should be able to help her. During our support group meeting last week, I was the only one there, so we talked about Ricky and Olivia. The therapist there also asked me if I had any suspicions of Aspergers with Olivia, and I told her that I had talked to Burkhart and what they had said. She has actually interacted some with Olivia at some of the support meetings, so she has a better view of her behavior than Burkhart, who have not seen her. She agrees that there are some strong traits.
Since we will probably be moving Ricky to the other school next year, I figure I'll just wait and talk to her teacher then, explain my concerns, and ask that they keep an eye on her. Then we'll do testing if we feel it's needed. I just don't want to NOT test her because I "know" she has Aspergers as well to avoid labeling, then find out that she needs some kind of accommodation later in school and have to fight to get testing done first before anything can be done to help her. Not fair to her.
I'm coping much better with my Aspergers now. I finished that book on dealing with anxiety and found a lot of things that have helped me pay better attention to my triggers and reactions. Switching my anxiety medication to bedtime has helped me sleep better at night and wake up feeling more relaxed. I don't have that immediate sense of terror that the day is going to be a struggle. I didn't even realize I felt like that in the morning until it was suddenly no longer there.
I'm making the kids penny boards to help with setting chores and rewards. It will also help Olivia learn to add and understand money, since once you get the hang of pennies, you can start exchanging them for nickels, nickels for dimes, etc. I think this will be good for both of them. I still need to make a big visual schedule for us to use this summer, but I'll get busy on that next. One day at a time.
Tuesday, April 2, 2013
CBT
Followed up with my doctor this afternoon. He's not sure why the anxiety and depression seem to have gotten worse, rather than better, with this medication. He said that medicines don't make these worse, only better; I have to disagree, otherwise there wouldn't so many different pills out there. Anyway, we're going to try the 10 mg for the next weeks instead of moving up to the 20, and then see where we are. He said we may switch to Zoloft if symptoms don't improve. We'll see.
I finished my book Aspergirls, and it was really interesting. A lot of things are applicable and really helpful, but still very general. I've started getting more into the anxiety book, and that is turning some helpful suggestions. I just finished the chapter on Cognitive Behavior Therapy (CBT), and I think there just might be something to it. I read through the different cognitive distortions and maladaptive schemas, and while they don't all apply to me, several do. I'm going to work out a worksheet of some kind where I can track my thought processes for each distortion/schema and then figure out a way to improve it. Can't hurt to try.
I'm trying to stay positive business-wise. I thought today about looking for a part-time job for while the kids are in school, but once summer hits, I'm still going to be stuck. I can either work for 2 months and quit, or I'm stuck paying for daycare I can't afford. So I would have to work more to pay it, leaving me with less money. Counter-productive to say the least. Ian's not pushing me to find another job, and I haven't even talked to him about this. I know it's not what he wants me to do, and I don't really want to do it either. One of the distortions/schemas talks about feeling unable to achieve/succeed on your own without approval/support/validation. Definitely an issue I'm facing right now.
I've had a few more people RSVP for the spa night on Friday, so I'm hoping that goes over well. I'd really like to take a decent donation to the Burkhart Center. Positive thinking is the basic tenet of CBT; might as well start working on it now.
I finished my book Aspergirls, and it was really interesting. A lot of things are applicable and really helpful, but still very general. I've started getting more into the anxiety book, and that is turning some helpful suggestions. I just finished the chapter on Cognitive Behavior Therapy (CBT), and I think there just might be something to it. I read through the different cognitive distortions and maladaptive schemas, and while they don't all apply to me, several do. I'm going to work out a worksheet of some kind where I can track my thought processes for each distortion/schema and then figure out a way to improve it. Can't hurt to try.
I'm trying to stay positive business-wise. I thought today about looking for a part-time job for while the kids are in school, but once summer hits, I'm still going to be stuck. I can either work for 2 months and quit, or I'm stuck paying for daycare I can't afford. So I would have to work more to pay it, leaving me with less money. Counter-productive to say the least. Ian's not pushing me to find another job, and I haven't even talked to him about this. I know it's not what he wants me to do, and I don't really want to do it either. One of the distortions/schemas talks about feeling unable to achieve/succeed on your own without approval/support/validation. Definitely an issue I'm facing right now.
I've had a few more people RSVP for the spa night on Friday, so I'm hoping that goes over well. I'd really like to take a decent donation to the Burkhart Center. Positive thinking is the basic tenet of CBT; might as well start working on it now.
Monday, April 1, 2013
Needs
Reading tonight. Found this to be particularly uplifting for my current mood.
Advice for dealing with women on the autism spectrum, from Aspergirls by Rudy Simone:
"...let her know that she's likeable, and we with AS [Asperger Syndrome] have a hard time with that. We're not socially accepted, and we have all these issues that make us difficult to deal with sometimes...Aspergirls get told by everyone from parents to job coaches that they should "fake it" to fit in. Imagine going your whole life faking your personality. Who could keep that up for long?...We need support -- moral, emotional" (pgs 221-223)
Advice for dealing with women on the autism spectrum, from Aspergirls by Rudy Simone:
"...let her know that she's likeable, and we with AS [Asperger Syndrome] have a hard time with that. We're not socially accepted, and we have all these issues that make us difficult to deal with sometimes...Aspergirls get told by everyone from parents to job coaches that they should "fake it" to fit in. Imagine going your whole life faking your personality. Who could keep that up for long?...We need support -- moral, emotional" (pgs 221-223)
Coping is Relative
I started this blog as a way to vent and express my fears and frustrations with trying to understand and help a child with autism. Since receiving my own autism diagnosis, I have come to realize that Ricky is doing a far better job of coping with his world than I am with mine.
Ricky is interacting with other people more and more frequently. His eloping episodes, while not completely gone, are at least at a minimum right now. He is excited about showing people what he knows, stopping whenever we're out somewhere to tell us what color and shape things are. He recognizes his own name when he sees it written and will spell it out for you. He calls more people by name now, although that is still a budding achievement.
His vocabulary and use of language have grown exponentially. The other night, he came in holding his stomach. When Ian asked him what was wrong, he said "stomach hurt." Stomach, you see, is a big word, and a new one at that. When Ian asked why his stomach was hurting (this was after dinner, and he had eaten), Ricky paused a moment before standing up straight and clearly saying "chocolate candy?!?" Like candy was going to make his stomach stop hurting. It was very funny, and just goes to show that he really does understand what's happening around him and how to manipulate his environment.
We are dealing with non-compliance issues now; he will ignore you or just outright disobey while looking you in the eye, daring you to do something. I think that is typical child behavior, and while it drives me batty and he gets his butt popped for it, I am happy to see that he is finally starting to behave in ways that are a little more "normal," for lack of a better word.
We should be having his ARD placement meeting soon to determine where he'll go to school next year and what services he'll receive. Unofficially, I have been told that the recommendation is to move him to a different school that has an outstanding autism program. Our home campus, where Olivia goes, does not have the right supports, and given my interactions with them this last year, I doubt they would make the effort even if they did have the right supports. The school he is at now is the pre-k campus, since not all of the elementary schools have a pre-k program. I wanted to keep him there, since he has made such great progress with his PPCD teacher, but she only teaches the PPCD 3-4 class, and since he will be 5, she wouldn't have him.
The recommended school has several options for us. They have a PPCD 5 class, which is what we'll probably put him in for next year. After that, depending on his progress, we can hold him back a year and put him in kindergarten, put him in 1st grade, or put him in the PPCD 6 class, where he will continue to get one-on-one support. I like options! Since there's no sense in dealing with 2 schools (this year was an exception, as the pre-k program was elsewhere), I'm going to put in a transfer for Olivia as well.
Good things are coming in his future. :)
I, on the other hand, am not coping as well. I don't know if it's because I have a different diagnosis than Ricky (Aspergers vs PDD-NOS), or because I have already gone so much of my life knowing I was different and struggling to fit in and make it without much success. In any event, I seem to be taking several steps backwards instead of moving forward.
I started the Lexapro reluctantly to see if it would help with the depression and anxiety. So far, the only thing I have noticed is that I am tired during the day (which I was not before) and I have weird dreams at night. Nothing creepy or frightening, just weird. I know it takes time for things to kind of sink in and start making a real difference in how you feel, but I'm not impressed so far. I have a follow-up appointment with the psychiatrist tomorrow afternoon.
I found an Aspergers support group for adults on Facebook, and that has helped a great deal in being able to talk to people. I have had several people from that page, which is really more of a forum, request me as a friend, and so I have been able to chat with them from time to time. It really helps knowing that when you tell this stranger something weird that you did that day, they aren't going to freak out and block you. Most of them are older than me and have been dealing with this condition for far longer than I have, many with long-standing diagnosis. There are a few, however, who have only been recently diagnosed, in the last few years, and they are in their 40s and 50s. I'm only 31; if my life has been this stressful and unproductive, I can't even imagine how much more they suffered with another 10-20 years of not knowing.
There are a few books I've found online that seem interesting, and I got 2 of them. One is called Aspergirls is written by a woman with Aspergers. She wrote it with the goal of creating a sense of unity among females with Aspergers, and I have to admit, a lot of what she says, and a lot of what her interviewees say, is perfectly applicable. It's been a very interesting read; I can't put the book down once I get started, so I've already read about 2/3 of it.
The other book is a stress management strategy guide written by a man with Aspergers specifically for people with Aspergers. I've just started it really, but I am learning a lot. The first two chapters defined stress itself and the body's natural reaction to it, and then how the Aspergers response is different. Apparently, the limbic system in the brain controls our fight-or-flight response, and this is the reaction that causes stress. When the stressor is gone (whatever is making you freak out), there is a secondary system that is supposed to take over and help you relax. In autistics, that secondary system is dysfunctional, causing our bodies to keep running on high levels of anxiety because it doesn't recognize that the stressor is gone. Then we're stuck in a constant state of panic, feeling that something is wrong, but since that original stressor is out of the picture already, we look to the immediate environment to find out what's still causing the anxiety. Then once we find something that "might" be the problem, we create new anxieties based all of these other stressors. So the stress never really goes away, and our list of things that freak us out just continues to grow. It makes a lot of sense!! I haven't gotten into the strategies chapters yet, but this is definitely a valued resource.
All that aside, I don't think I'm making any progress. It's like knowing why I am the way I am is forcing me to go back and rip open old wounds to evaluate why the situation happened like it did. You'd think this would be a good thing, but I'm stuck there. I keep seeing myself fail at things because I didn't know how to adapt, but I don't see myself being able to change those responses now because I still don't know how to adapt.
I know that will come with time, but in the meantime, I feel myself becoming more and more weighed down. I feel paralyzed and depressed. I'm not eating much, and when I do, it's not very good for me. All I want to do is sleep. I don't want to go out and do anything or talk to people. I'm crying all the time with no reason.Admittedly, I did have a good time yesterday at my aunt's house with her and my cousin's for Easter, but it's because that side of the family doesn't judge and doesn't jump to conclusions or create stigmas. They know about me and Ricky, and they were completely supportive in trying to understand what was going on and what we were doing. Pleasant change.
Money problems are not helping anything. Ian has been very supportive of me quitting my job last year to be available to the kids and working to build my Herbalife business. Problem is, I'm so freaked out by social interactions and assumptions about what bad things "might" happen, that I'm not making any progress in business!! I want to go out and talk to people, but the very idea brings on a panic attack. I'm uncomfortable working in the new club -- we moved there unexpectedly and on VERY short notice (as in, "hey, by the way, this is our last shift at this club, and next week we'll be downtown" -- with about 15 mins left of that shift!), the people there, while I know them, are not my friends (not that I really have many anyway!) and don't understand my anxieties. I get tired of being told "just talk to people" when it's so painfully obvious to me that if I COULD "just talk to people," I WOULD!
I don't understand why they can't see that! Even when I try to explain why I can't just walk up to someone the way they do, they don't understand. I've been told to lose "can't" from my vocabulary (would love to!), "do the uncomfortable until it's comfortable," "I didn't have anyone to hold my hand, I had to learn on my own," etc. That last one, especially, upsets me. I don't want ANYONE to hold my hand and do it for me! I just need the support to go out there and not be alone. There for a while, we were doing things as a team, and while not "together," we were doing things as a group. Going out to do invites, and having each of us go into a different store then meeting up outside. That was doable, albeit very uncomfortable. But at least I wasn't alone. I had some support in getting started and maintaining my sanity during the whole thing.
Now, we do nothing as a team. I feel useless in the club, as even though we "schedule" when we're going to be there, I'm the only one who actually does, and then when I come in, the majority of the time, there are 4-6 other people behind the bar! I'm not needed there with that many people, there's no room, they are usually the people I'm not friends with, and I don't want to be there. There's no reason for me to sit around staring at the counter doing nothing. I could do that at home -- and so I do. That support system, however minimal, is completely gone now, and I don't have the social skills and confidence needed to strike out on my own.
Money is painfully tight right now, and while Ian has been very patient in trying to let me get this off the ground, he has decided that he can't wait any more and is looking for a part-time night job. Like that doesn't make me feel like crap. I can't function around people, I no longer have the needed support for business-building, and I can't even help take care of providing for my family. Ian's not letting me give up or quit, but that just makes it that much worse. Why should he have to work 70-hour weeks when I'm not producing anything?
Then things just start to cycle over. I feel useless, depressed, and anxious. I can't get people to understand me, so I can't get the basic help I need. I feel like that commercial on tv -- "I don't have any money. I can't get a good job. I don't have the money to go to school." Part of that may be the Aspergers talking -- I see a pattern in my life right now, and I stick with it. I don't see it change because change is scary, but so is a lack of change. I don't know what to do, what to think, or what to feel. So I do nothing, think negatively, and feel empty. Not really a very good way at coping, particularly since the autism is NOT going to go away. It's been here my life, and it will continue to be here. I've got to find a better way of dealing.
Ricky is interacting with other people more and more frequently. His eloping episodes, while not completely gone, are at least at a minimum right now. He is excited about showing people what he knows, stopping whenever we're out somewhere to tell us what color and shape things are. He recognizes his own name when he sees it written and will spell it out for you. He calls more people by name now, although that is still a budding achievement.
His vocabulary and use of language have grown exponentially. The other night, he came in holding his stomach. When Ian asked him what was wrong, he said "stomach hurt." Stomach, you see, is a big word, and a new one at that. When Ian asked why his stomach was hurting (this was after dinner, and he had eaten), Ricky paused a moment before standing up straight and clearly saying "chocolate candy?!?" Like candy was going to make his stomach stop hurting. It was very funny, and just goes to show that he really does understand what's happening around him and how to manipulate his environment.
We are dealing with non-compliance issues now; he will ignore you or just outright disobey while looking you in the eye, daring you to do something. I think that is typical child behavior, and while it drives me batty and he gets his butt popped for it, I am happy to see that he is finally starting to behave in ways that are a little more "normal," for lack of a better word.
We should be having his ARD placement meeting soon to determine where he'll go to school next year and what services he'll receive. Unofficially, I have been told that the recommendation is to move him to a different school that has an outstanding autism program. Our home campus, where Olivia goes, does not have the right supports, and given my interactions with them this last year, I doubt they would make the effort even if they did have the right supports. The school he is at now is the pre-k campus, since not all of the elementary schools have a pre-k program. I wanted to keep him there, since he has made such great progress with his PPCD teacher, but she only teaches the PPCD 3-4 class, and since he will be 5, she wouldn't have him.
The recommended school has several options for us. They have a PPCD 5 class, which is what we'll probably put him in for next year. After that, depending on his progress, we can hold him back a year and put him in kindergarten, put him in 1st grade, or put him in the PPCD 6 class, where he will continue to get one-on-one support. I like options! Since there's no sense in dealing with 2 schools (this year was an exception, as the pre-k program was elsewhere), I'm going to put in a transfer for Olivia as well.
Good things are coming in his future. :)
I, on the other hand, am not coping as well. I don't know if it's because I have a different diagnosis than Ricky (Aspergers vs PDD-NOS), or because I have already gone so much of my life knowing I was different and struggling to fit in and make it without much success. In any event, I seem to be taking several steps backwards instead of moving forward.
I started the Lexapro reluctantly to see if it would help with the depression and anxiety. So far, the only thing I have noticed is that I am tired during the day (which I was not before) and I have weird dreams at night. Nothing creepy or frightening, just weird. I know it takes time for things to kind of sink in and start making a real difference in how you feel, but I'm not impressed so far. I have a follow-up appointment with the psychiatrist tomorrow afternoon.
I found an Aspergers support group for adults on Facebook, and that has helped a great deal in being able to talk to people. I have had several people from that page, which is really more of a forum, request me as a friend, and so I have been able to chat with them from time to time. It really helps knowing that when you tell this stranger something weird that you did that day, they aren't going to freak out and block you. Most of them are older than me and have been dealing with this condition for far longer than I have, many with long-standing diagnosis. There are a few, however, who have only been recently diagnosed, in the last few years, and they are in their 40s and 50s. I'm only 31; if my life has been this stressful and unproductive, I can't even imagine how much more they suffered with another 10-20 years of not knowing.
There are a few books I've found online that seem interesting, and I got 2 of them. One is called Aspergirls is written by a woman with Aspergers. She wrote it with the goal of creating a sense of unity among females with Aspergers, and I have to admit, a lot of what she says, and a lot of what her interviewees say, is perfectly applicable. It's been a very interesting read; I can't put the book down once I get started, so I've already read about 2/3 of it.
The other book is a stress management strategy guide written by a man with Aspergers specifically for people with Aspergers. I've just started it really, but I am learning a lot. The first two chapters defined stress itself and the body's natural reaction to it, and then how the Aspergers response is different. Apparently, the limbic system in the brain controls our fight-or-flight response, and this is the reaction that causes stress. When the stressor is gone (whatever is making you freak out), there is a secondary system that is supposed to take over and help you relax. In autistics, that secondary system is dysfunctional, causing our bodies to keep running on high levels of anxiety because it doesn't recognize that the stressor is gone. Then we're stuck in a constant state of panic, feeling that something is wrong, but since that original stressor is out of the picture already, we look to the immediate environment to find out what's still causing the anxiety. Then once we find something that "might" be the problem, we create new anxieties based all of these other stressors. So the stress never really goes away, and our list of things that freak us out just continues to grow. It makes a lot of sense!! I haven't gotten into the strategies chapters yet, but this is definitely a valued resource.
All that aside, I don't think I'm making any progress. It's like knowing why I am the way I am is forcing me to go back and rip open old wounds to evaluate why the situation happened like it did. You'd think this would be a good thing, but I'm stuck there. I keep seeing myself fail at things because I didn't know how to adapt, but I don't see myself being able to change those responses now because I still don't know how to adapt.
I know that will come with time, but in the meantime, I feel myself becoming more and more weighed down. I feel paralyzed and depressed. I'm not eating much, and when I do, it's not very good for me. All I want to do is sleep. I don't want to go out and do anything or talk to people. I'm crying all the time with no reason.Admittedly, I did have a good time yesterday at my aunt's house with her and my cousin's for Easter, but it's because that side of the family doesn't judge and doesn't jump to conclusions or create stigmas. They know about me and Ricky, and they were completely supportive in trying to understand what was going on and what we were doing. Pleasant change.
Money problems are not helping anything. Ian has been very supportive of me quitting my job last year to be available to the kids and working to build my Herbalife business. Problem is, I'm so freaked out by social interactions and assumptions about what bad things "might" happen, that I'm not making any progress in business!! I want to go out and talk to people, but the very idea brings on a panic attack. I'm uncomfortable working in the new club -- we moved there unexpectedly and on VERY short notice (as in, "hey, by the way, this is our last shift at this club, and next week we'll be downtown" -- with about 15 mins left of that shift!), the people there, while I know them, are not my friends (not that I really have many anyway!) and don't understand my anxieties. I get tired of being told "just talk to people" when it's so painfully obvious to me that if I COULD "just talk to people," I WOULD!
I don't understand why they can't see that! Even when I try to explain why I can't just walk up to someone the way they do, they don't understand. I've been told to lose "can't" from my vocabulary (would love to!), "do the uncomfortable until it's comfortable," "I didn't have anyone to hold my hand, I had to learn on my own," etc. That last one, especially, upsets me. I don't want ANYONE to hold my hand and do it for me! I just need the support to go out there and not be alone. There for a while, we were doing things as a team, and while not "together," we were doing things as a group. Going out to do invites, and having each of us go into a different store then meeting up outside. That was doable, albeit very uncomfortable. But at least I wasn't alone. I had some support in getting started and maintaining my sanity during the whole thing.
Now, we do nothing as a team. I feel useless in the club, as even though we "schedule" when we're going to be there, I'm the only one who actually does, and then when I come in, the majority of the time, there are 4-6 other people behind the bar! I'm not needed there with that many people, there's no room, they are usually the people I'm not friends with, and I don't want to be there. There's no reason for me to sit around staring at the counter doing nothing. I could do that at home -- and so I do. That support system, however minimal, is completely gone now, and I don't have the social skills and confidence needed to strike out on my own.
Money is painfully tight right now, and while Ian has been very patient in trying to let me get this off the ground, he has decided that he can't wait any more and is looking for a part-time night job. Like that doesn't make me feel like crap. I can't function around people, I no longer have the needed support for business-building, and I can't even help take care of providing for my family. Ian's not letting me give up or quit, but that just makes it that much worse. Why should he have to work 70-hour weeks when I'm not producing anything?
Then things just start to cycle over. I feel useless, depressed, and anxious. I can't get people to understand me, so I can't get the basic help I need. I feel like that commercial on tv -- "I don't have any money. I can't get a good job. I don't have the money to go to school." Part of that may be the Aspergers talking -- I see a pattern in my life right now, and I stick with it. I don't see it change because change is scary, but so is a lack of change. I don't know what to do, what to think, or what to feel. So I do nothing, think negatively, and feel empty. Not really a very good way at coping, particularly since the autism is NOT going to go away. It's been here my life, and it will continue to be here. I've got to find a better way of dealing.
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