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.
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