It's been a while since I've posted a non book review blog. I need to write down the things that I've recently learned. What better way to do it than blog about it, I can edit and erase and save, and come back to it, all the while venting my own thoughts about it.
Asperger's Syndrome, Dysgraphia, Dyslexia, ADD. All of these things are a label that has recently been slapped on my 11 year old son. ADD is a somewhat older diagnosis, and one that we are probably going to revisit, as of right now we're on a trial of no medications to see how he does, not that I think anything will help, because there's no treatment for the other things that he has, except for therapy, and he hasn't had that yet. He says he's doing okay, he's just tired, he thinks the medication helped him stay awake. Of course it is summer right now, there's no need to focus on school work. I haven't looked into Dysgraphia or Dyslexia yet, mostly because there wasn't any books on it at the library.
Over the course of the past week I have read no less than 5 books on Asperger's Syndrome. These are the things I have learned. I knew a lot of things about him, but a lot of it didn't truly CLICK in my head until I read about what a person with Asperger's thoughts are. And now I understand my son just a little bit more than I did before. I'll post this where family can read it, or whoever, maybe it will help explain a few things that they've noticed.
1) He's got sensory issues. When Stephen would beg not to wear long pants during the winter, and would claim the cold doesn't bother him. This was a symptom. Every book I have read mentioned that Aspies are seemingly unaware of things like cold or heat or pain. He claimed he wasn't cold, maybe because he wasn't? Also, he doesn't like the feel of things on his lower legs. Sensory things. Also a symptom. I think this also means that I have to figure out how to get him to wear long pants or I could be accused of neglect or something when it's cold. That is going on my list of questions to ask a doctor, how do I approach things like that. He also dresses for comfort. I thought basketball shorts/shirt was because its popular, its cool. Actually, he likes the feel of it on his skin, AND it doesn't have a tag that irritates his neck. So until he finds something else he likes the feel of on his skin, he's getting basketball clothes. Specifically Nike, more specifically Black and red. He has a closet full of polo shirts, he says he doesn't like the feel of them, he never wears them. I've noticed the clothes that he will wear, are mainly 100% cotton, and comfortable. He dresses for comfort, not for looks. He has a problem with basic hygeine. He doesn't like strong toothpastes, or the feel of dove soap and some other soaps. Food isn't a huge problem, unless it's stuff like processed cheese. It's not fun for him, the taste and texture, and me not being on top of his lunch money sometimes has caused huge problems in school because they give him a grilled cheese sandwhich, which is his own bitter enemy in the food category.
2) He is very literal, I have always known this about him. If you call his nana grandma, he will correct you. If you ground him but decide to let him have one thing back one day earlier, he will tell you "you told me I won't have this until this day" he's very firm about being called Stephen with a PH. If you call him Steve, it's not pretty. He does have a grasp of idioms and sayings and sarcasim, but sometimes he will correct you. Don't be offended or put off, he's actually very much high functioning asperger, some people don't grasp the idioms or slang or anything at ALL. If it's something new he's never heard, chances are he will correct you, or take you very seriously. He will take a brussel sprout and call it a lettuce ball, because thats what he thinks of it. It's funny, but in hindsight, sometimes aspies will call things by a literal name, because thats what it looks like, so therefore thats what it is.
3) He's very blunt. If you are a family member and you tell him that he cannot eat in the living room because his mother didn't clean a tray properly, then you feel disrespected because he asked why you were eating in the living room yourself? this is not disrespect, this is a symptom, this is him being literal and being blunt. This is him not understanding. You need to reevaluate your christian views because you kicked my son out of your house for being himself.
4) He doesn't act his age. He's 11, he does not have the same interest as other 11 year olds. He still loves legos, minecraft, and playing with his younger best friends, but because peers his age are starting to get into older things, he has trouble making friends. Right now we are okay, but as his friends age and get into older things, they might start breaking away from him, and as a mother, I need to be prepared to not murder people for hurting my son for not being his friends anymore.
5) He has passions. This is what I have learned subjects that he is intensely focused on are called. His passions, things that he is very passionate about. I remember when he was so young, a year old? less? older? I don't know, I just know that he made me watch the movie Cars until we went through THREE dvds. They were watched so much they stopped working. Finding Nemo was another one, we went through two of those. For the longest time it was pirates, the titanic was in there for a little bit. It was star wars, the army, pokemon. The longest running things and the biggest were pirates, minecraft, and legos. Minecraft and legos are the top of the list right now. Ask him about minecraft and you will learn more than you ever wanted to know about it. He is big into hacking his current game, and it drives me nuts because his phone is practically about to explode from all the apps he's downloaded, but it makes him insanely happy, and he loves it when I ask about it, he goes on and on and his face just lights up.
6) He doesn't understand boundaries. He actually goes against everything Aspie in this aspect. Most don't like to be touched. He loves hugs, he's very very affectionate, unfortunately, he also has a problem with personal bubbles. He completely doesn't understand that sometimes people just have this bubble that you really shouldn't cross. It's not his fault, he just doesn't have the social knowhow about it. And if I tell him that I have a personal bubble that I need less hugs at this moment in time, the blunt literal thing comes out. "You don't have a bubble, you're my mommy" he doesn't understand that sometimes, people just don't like to be tapped on the head. He tends to tap people on the head a lot. It's one of those things that he does that drives me nuts, I'm sure it'll drive someone else nuts, but it's just one of those things that I have to work on getting him to understand, I don't know how yet, but it's on the list of questions to ask a doctor.
7) He expects promises to be kept. If you mention in passing that you will always reward him with a good report card, when that report card comes out, you better have money to buy something. If you don't he will remind you that you promised to buy it, over and over again. He will shop amazon on your phone, his phone, his tablet, your computer if it wasn't locked with a password. If you tell him you can't get it right now, there's no money for it, expect a problem. If you tell him that you will make sure he always has a pair of brand new shoes on his feet, he will mention to you that he has a hole in his current shoes, and it's time for brand new ones (my dad and stepmom know what i'm talking about) IF you tell him you will take him to dinner that night, or that we're going somewhere, make sure it happens, because he expects it now.
8) He shuts down. One of his biggest symptoms ever, that he was even taking medication for, was shutting down. It was labeled anger. That is not what it is. This is what we call a meltdown. A meltdown is typical of an Aspie. if you see a kid in the middle of a hallway at walmart screaming at the top of his lungs laying on the floor, chances are that child is a autistic child. Stephen doesn't outwardly meltdown, he inwardly melts down. Sometimes Stephen will get frustrated, overstimulated, overwhelmed, that he has no choice but to shut down, he gets quiet, he withdraws completely, and the best thing to do in that situation is to just let him be. In his head he is going through his own process of calming down and relaxing and he will eventually snap out of it. He tried to tell me once what his process was, but it's his own process, it's hard to explain. The biggest cause I have noticed from stephen shutting down, is being told to do something that he doesn't want to do. He has a HUGE problem with change. It's also from him not understanding what is going on in a school setting. If he's doing something his own way, and someone tells him no, it's done that way, he's doing his own ritual, rituals are very important to an Aspie, it helps him understand. And to be told to change and do it some other way, that is grounds for a meltdown. If he is in a loud, crowded place, he will be in sensory overload, too much going on at once, he's going to shut down. He has told several people that he doesn't like being in a school cafeteria because it is too loud. He's very literal, if he sees other kids playing around, talking, skipping in line, he will think that is okay for him to do, so when he gets in trouble, while other kids don't get in trouble, that is definitely grounds for a meltdown. I don't believe he experiences anger like most people, I think he gets scared. He doesn't feel safe, he doesn't feel comfortable, so what else to do but shut down.
9) He seems like he is overreacting. There are some things that he focuses on, things that are so far remote from happening EVER, yet it scares him to death. I always thought it was his imagination, but it turns out that he probably really was concerned about these things. Some of the things that I can recall off the top of my head.. tornadoes. I remember one particular storm in oak hill, he was full blown meltdown, like outwardly melting down. We were in fact under a tornado warning, He was scared to death. He had watched Tom and Jerry's wizard of oz, and for years after that, he was terrified of that movie, the real movie, I even had to stay home one day with him because his class was going on a field trip to see a play based on the wizard of oz. It was all because of a fear of a tornado. Even 3-4 years after all of that, he would occasionally bring up a "what if a tornado..." and now and then during a bad storm, he has one of those "what if there was a tornado right now?" next time this happens, I will sit down with him and explain what we will be doing if there was a tornado. I won't blow it off like, yeah okay thats never going to happen. I think that this fear of his and the "what ifs" were genuine concerns of his, and I need to learn to not blow things like that off. Zombies. Zombies is another one that I would physically roll my eyes at. Also possibly another genuine concern, "what if zombies would come right now" Maybe I need to go get a book on surviving a zombie Apocalypse, so that he has the information he needs to survive one. maybe he needs to be provided with the information on what to do to be safe if something extreme ever happened, so that he can feel safe. But again this is one of those things I don't know about, do I encourage and provide him the information, or do I not? If he doesn't process things the way a normal person would, something that would seem so incredibly far out there, might be a real and possible thing to him, until he learns about it. This is another question for how to react.
Aspies can come across as self centered, selfish, manipulative, but in reality, they have absolutely no idea what they are doing wrong. From the things I've read, they feel so much, but have a hard time expressing it, the social awkwardness that comes from having such a hard time making friends, they don't know how to really have conversations, start up conversations, so the topic always turns back to them, and what they like, or what they think about this. Stephen might not ever know how to start a conversation that doesn't begin with his favorite topics. If you ask him how was school, he doesn't have much to say about it, but if you ask him how to build something in minecraft, if it's created or built, or whatever he will glow and talk for hours until you wish you never asked.
The more I read, the more I am finding things that I can even apply to my own self. I like solitude, I prefer it even. I don't make friends easily, I don't understand a lot of the social things going on around me. I don't understand why family members don't accept my friendship on facebook, what I did or said that made them so mad that they wouldn't want anything to do with me. I said something to a former friend/coworker that was taken the wrong way, and to this day I still don't fully understand how I upset her so much that a lot of my coworkers don't like me. Apparently what I said was so upsetting, but I don't understand WHY? It wasn't meant to come out like that. I've apologized over and over, but nothing.. So another friendship bites the dust (We have talked some since, and it appears to be worked out between her and I). Past relationships, I remember one of my ex's telling me there was something wrong with my way of thinking, that i'm crazy and I'll probably end up alone. I figured it was just another form of abuse, but what if some part of my thinking process is really not the same as everyone elses? I have zero social skills, I've always considered myself a extreme introvert. It doesn't occur to me to keep up with people the way that I should, I don't initiate stuff, and most of the time I have to be told, hey, call this person for this reason, unless I have a alert on my phone reminding me that this event is coming up. I get really anxious when something new happens, a new place a new party, a gathering where I meet someone new. If I ever met my boyfriends family all together, I swear I'm going to have a panic attack the entire way there and just typing what I have makes my stomach hurt. I don't like confrontation, if someone is yelling at me, or upset at me, I retreat to another room, usually with a book, I withdraw and need my space, and to be alone. As a teen I was always aware that I never quit fit in, I faked it a lot, and I pushed myself. I didn't think working in the public would be my thing, so I got a job at Publix. Faking it is was easy for me, and since Publix, every job I've had is with the public, I force myself out there so now I am good at what I do, I may not have meaningful conversations with my patient, but if I put myself out there and say more than hi to someone, I can usually get through it pretty easy. If I'm honest with myself, I question how I do what I do, and so well. I think a lot of the speech therapy I had as a kid, the therapy I went through in school for my hearing impairment helped me learn facial expressions and things, that made me better socially, I really think that, and I think if stephen has all of that, he is going to thrive too. I also have sensory weirdnesses, I can't stand the feel of a lot of things, from lace to the roof of a car to a soft fuzzy blanket, if my skin gets dry, especially on my leg, I can't stand the feel of it so much that it hurts. My whole life I have fiddled with the edge of pillowcases, my pillowcases are so warn down and threadbare from fiddling, that I think it's part of my stim process, it's how I relax, how I calm down, I know when im stressed, or upset, i grab a pillow, if a pillow isn't around, them hem of my clothes get it. If I am not fiddling with something, usually im scratching at my scalp. You know I'm upset or something is going on if im scratching my scalp, or picking at it. A stim is basically like rocking or flapping (those are typical stims) neither stephen nor I do that, his relaxation is retreating to his mind, in a quiet space..mine is fiddling or picking. I can't communicate well in person, face to face. If someone asked me to talk about this in person, I wouldn't be able to do it, I communicate better by writing, blogs, texts, emails, usually this is the way to go in talking to me.
My reading can be considered a passion. A normal person wouldn't read 500 books a year, with the intense hyperfocus that I have, where I will get emotionally angry at whatever interruption was going on to make me stop reading. One of the books I read was so awful, it was written by an Aspergirl, but one paragraph just resonated with me so much. here it is:
Is that not me or what? cause I have done, and still do it all the time. my life depends on me finishing this book I'm reading..RIGHT NOW. It's painful to stop reading.
A diagnosis for me isn't life changing, there is no need, I am 35, I am who I am. I'm aware that I will never fit in, I'll never have a best friend to go do girl things with, I'm always going to be this awkward person that says or does things to annoy people, and people won't like me. I don't understand it, but it is what it is. I can't change me, and a diagnosis doesn't make me different. But maybe it will help others understand me a little bit better.
I've read a lot of books lately on Aspergers, and each one of them I was able to take something in it, and think about how Stephen is as a person, and apply it to him, and it was like connecting a puzzle. Some of it I was like, but that can't be right, is this the right diagnosis? Stephen isn't anything like that at ALL. I have learned that every Asperger's person is different. That's why they call it a Autism Spectrum, he's on the spectrum for autism but he is extremely high functioning. He might not be like the autistic kid you know from down the road, because he's not, his brain is made just for him. My son is perfect to me. Hopefully he is perfect to you too.
If you made it this far, thanks for reading. Everything I said isn't perfect, or an exact science, maybe I read too much into some of the things he does or says, but I'm still learning, I'm looking at my son with new eyes, taking what I know and fitting it with what I'm learning. When I read back on what I've connected together, it's amazing that I didn't see it before, but I never really knew much about any of it.
