Sunday, December 27, 2015

Post Holiday Meltdown

You know that feeling you would get after being on your feet all day? Can you imagine how you would feel if you just got up tomorrow and walked or even ran all a full 20 miles or something? (Assuming you don't really like to do that sort of thing on a daily basis or something.)

Well, the post holiday exhaustion for someone with autism is kinda like that. Just an all consuming, full out exhaustion. 

Now, I'm practically 8 months pregnant, so maybe this year its just stronger than normal. But I'm pretty sure my 9 year old son is not pregnant, and he is acting more exhausted than usual.

The fact of the matter is, socializing is exhausting for most people with autism. Several days in a row of high intense activity and socializing can wear on your emotions and strength. It's been almost non stop since Friday, even though we haven't had a totally crazy time or anything, it's still been overwhelming and exhausting.

I'm not the napping kind much anymore. Naps set me off and make me feel funny most of the time. But on days like today, I just can't keep my eyes open! I had a "half nap" on the couch tonight. I say half because I still had one ear open for a child. :P

Anyway, I feel a little better and can keep my eyes open. But I am still worn. I could go to bed now if it weren't so depressing to do so. (It's only 8 pm). 

We have to start getting back into the grind of some homeschooling before this baby is born so we can get through 4 weeks before the arrival. I hope that we both can get through this little hump so that tomorrow we will be able to get to the work and get done well. 

It's just a simple fact that all the stimulation and action has an effect later on. You might not get to see it, but just because it doesn't happen when you're around doesn't mean it doesn't happen. In fact, it's probably normal that you don't see it, because usually it happens when the person feels the most safe and the action has actually decreased. It's like we hold it in until you aren't around anymore. We maintain our sense of ability until it's over and then the whole world crashes around us. Everything else stops. I get my house back cleaned and in order and then CRASH! The exhaustion takes over everything and no one around here is good to talk to anymore lol!

Anyway. It's real, it's true, exciting times lead to difficult exhaustion later on. It's just a part of life, and the more we adjust and accept it, the better we will fair in life in general. If we expect it, and prepare for it, we will be able to pass through it better than if we try to fight it and avoid it. You can't avoid it. Your body is still going to shut down and quit at some point, just let it, and it will be over with.

Tuesday, December 22, 2015

Feeling Things Differently

I've been having a lot of french toast lately.

I wouldn't call it a "craving" though. In fact, during none of my pregnancies would I say I had a specific craving for anything in particular. With them all I wanted sugar, but I'm kinda a sugarholic to begin with. With my son I couldn't even stand the smell of meat, and with my daughter I didn't mind it. This pregnancy I have no meat aversions.

But never was there something I wanted so desperately and couldn't have it (besides the sugar, believe me, I know how bad it is...)

But I've been having french toast a lot lately. Even when I was taken out for dinner last night, I had french toast. Today for lunch I had leftover french toast. We had french toast for breakfast both Saturday and Sunday morning. 

Is that a craving?

In my previous labors, everyone always talks about how excruciating it is. I had 2 natural births, and I don't remember excruciating. I remember uncomfortable and hard work, but it was more compared to me running a marathon (and anyone who knows me should know how much I looooove running *sarcasm). 

Maybe I'm just lucky. I did have rather short births that I started out dilating weeks ahead of time for. With both I was nearly 4-5 cms before I was feeling much besides the normal tightning. Which also reminds me of people talking about how braxton hicks were so painful, and mine are nothing more than tightning or a slight ache, nothing I would even compare to having a period to be honest.

Is there just something about it, or does it really vary that much? I mean, I know that I think of things differently, I think about different things, I know I'm different because of my autism. I know many people with autism feel the same way. 

But is it different enough that literally there are physical differences that we don't feel sensations of life the same as everyone else? I'm sure not all autistic people have "low pain" births like I have. Maybe some are on the complete other end of the spectrum completely.

What I'm saying is maybe its possible that our brains take in ALL sensory information differently enough that we have a completely different life experience because of our brain differences? Literally having physical life experiences are different, either good or bad, because of our autism?

I don't know the answer. I know some people are affected by sound, like my son. I know sometimes when my brain is overwhelmed, I have a harder time with sound too. Most of the time though I'm just very hard of hearing. 

Anyway, it was just something I thought of today and figured I would write. I know it's been a while again. I just have been so distracted I haven't thought of much to say.

Thanks, and Merry Christmas!

Sunday, November 15, 2015

The Aspie Life & The Expectations Of Outsiders

Recently I had a few short conversations, and it brought my attention again to the fact that what you do inside your own family with autism/aspergers is completely different from the perspectives people without autism have.

One quick thought I have is although it seemed like everyone else was SOOOO concerned with my having a crush on my teacher, my mother was highly unconcerned. See, she's on the inside, and from the inside, she understood from her personal experience and perspective, and never gave it a second thought. And obviously, to me that means she trusted him too, which is encouraging. 

But probably the most common, is discipline. First of all, based on a LOT of research (and I mean a LOT, including religious research {EGW}), I am intending to parent differently than my parents did, or their parents. Most of the time, I completely fail it, do it wrong, do what I know. But I intend to do things differently.

Even so, I've TRIED the other route, and it simply doesn't work. Instead of putting the "fear of God" into the kids, it puts the fear of ME into them. I don't want my kids to obey me because they fear me, I want them to because they trust me and that it's the right thing to do. I want to engage their critical thinking skills or something. 

I want to "teach [my] children pleasantly, without scolding or faultfinding, seeking to bind the hearts of the little ones to them by silken cords of love". (CG, pg 86) Again, I fail fail fail at that so badly, I scold quite a lot and faultfind quite a lot. I'm a perfectionist, and unfortunately that falls onto my kids too sometimes, and I'm really bad at holding myself together sometimes. But I do intend to do things in a way that bonds them in love, instead of fear. It is apparently an incredibly difficult thing to balance because I feel like I'm failing at that every single day. *guilt*

But, as I said, I've tried that ever popular, punishing "other way" that everyone seems to love and support. All it has done in THIS house is increase the anger, in both directions, and increase the attitude, and give more fuel to the fire of anger and vengeance and meltdown intensity that the boy has. I personally remember it increasing my "hatred" of my parents. I don't want to encourage that!
 I feel things would be at least 90% better if I could control MY response/reaction, but still, the method of punishment only makes things worse.  It has, and it does, still. 

Now, on the outside, this looks like permissive parenting. We let things slide that the average person wouldn't. When it comes to attitudes and sass, there is a higher limit to those things in this family, simply because we know where it's coming from (the autism, sensory issues or whatever the situation dictates). We understand the limitations our kid has and we don't punish him for it because we understand the whole picture. We don't punish him for losing it in a high noise/high sensory situation because it is not his fault that his system cannot manage those situations for very long. I think, reflecting on this, we don't always do a good enough job of helping him to avoid or take a break from that situation either.

That's like punishing an adult for swearing after they just stuck their hand on a hot electric burner. Would you really expect an adult to maintain calm after that just fried their hand? Then why do we expect kids (with or without autism) who have sensory issues (or maybe even just normal kids) to be perfectly behaved in overwhelming situations? After all, an adult has at least 2 decades of experience "practicing" dealing with situations. It should go without saying that a child has less experience and practice dealing with life in general, but more so when they are overwhelmed by life to begin with! So to punish them for that? It's a really really hard decision to make.

Obviously, this does come with a balance and enough does become enough. We do draw the line somewhere. It's just in a different place than everyone else thinks we should draw it.

Maybe if we drew the line sooner, we wouldn't get so far into intensity, you might be thinking. Sure, that might be true. But we don't choose to make every single infraction WWIII. We'd like to try giving him a chance to think about it and change his behavior under his own power instead of using force. Additionally, as an aspie myself, I know that I'd rather do things based on my decision to, or because it makes sense. If I don't understand it, I tend not to want to "follow along" no matter who is doing the leading in whatever situation. So, we try to give him a chance to understand why he should do something, or that he should do it because it's in his best interests, or whatever. This means some deliberation has to take place! We have to discuss it or talk it out. Sometimes this is enough to help him tell himself "oh, okay..." and it's over. Sometimes it doesn't work and the sass gets worse, and we do have to step in and step up and get more firm. It just doesn't happen at the first indication of friction, and we want him to choose it, instead of having to start a war to force it.

See, there's another angle to look at this from too. My kid is one of those kids who isn't necessarily afraid to speak up. Sure, he does it with us, and an outsider considers that as disrespect. As I explained, we know there's a process there that we have to go through with him and it's going to look crazy to you on the outside. But, at the same time as much as he's willing to talk back to us, he will and has used that same strength to talk back to someone who's trying to make him do something that goes against our morals or family guidelines. He isn't afraid to speak up for what we've taught him is right and wrong. It doesn't matter if that ends up being a friend or family. I appreciate that. I have less worries about him being a people pleaser, or caving to peer pressure because he just doesn't care about doing something he knows is wrong or makes him uncomfortable. 

Basically, if you have no experience with autism, or even with that particular child, you don't really know from the inside what is going on. To be honest, autism or not, you really don't have the right to interject your opinions on parenting into someone else's parenting situation, because you just don't have the whole story. You can't possibly understand the family dynamic or the personality of the parents and the child involved, Add autism, either in the parent, the child, or both, and you're really overstepping into a world you really don't understand. If you know one person with autism, you know one person with autism. So even if you do, that doesn't mean that you know everything about it and can offer suggestion to another family about it.
If they ask, or engage in a conversation that is leading to needing help or whatever, then fine, the door has been opened. But otherwise, you'd best file it away in "I don't understand the full picture.." section of your brain and just not say anything unless you're invited.

Also, I can't help but think of the whole "people who live in glass houses shouldn't throw stones" line. If you think you should offer advice of how one way is better, you'd better be able to back that up with healthy outcomes. I find it the most frustrating to receive advice from people who's families are a complete mess as a result of the same said advice. Perhaps they think one doesn't have anything to do with the other? As if our childhoods don't determine anything about our futures? I don't know about that. I think, as they say in "Hope Floats", "Childhood is what you spend the rest of your life trying to overcome.". 

As I said about myself, I usually end up falling into what I know, yelling and punishing. I KNOW it doesn't work, I HATE doing it, but somehow its easier to yell and lose it than it is to stop myself, do the hard work of connecting and focusing on the problem. Again, I hate it, but I sometimes just can't overcome the things I know. And my parents can't overcome what they know, and theirs can't overcome what they know either. 

People think that all these "labels" are somehow excuses for kids to misbehave. I think we all need to be told that it isn't an excuse, it's an explanation. If you are having a health problem, the diagnose isn't a label, its the explanation. It all of a sudden makes your life make sense, because you're suffering and all of a sudden, you know why. Autism is no different. See, previous to the past few years, or maybe a decade, autism wasn't recognized the way it is today. I'm only in my early 30s and it was completely missed in me when I was a kid. I know I'm not the only one. There's likely thousands, if not millions, of undiagnosed out there. We've had 30 years to practice life, and we are who we are, and honestly most of us don't care what you think about that. We're that "weird" person you know, or "difficult" or "antisocial" person. So, that being said, we grew up where it was thought that we were just being jerks, so we'll punish it out of you. NOW, as I said, I can look at the whole picture. 

My son has autism. When we decide to try to go to a waterpark hotel for his birthday, and all of us end up fighting and having meltdowns, we know it's because of the noise, the lights, the people, the excitement, and so much pressure to have fun. No, my kid is not giving us a hard time, he's HAVING a hard time. I can look at him with more understanding and patience because I know that it's not something he can yet control. I have to help him learn it and I have to teach him how. 

Anyway, does this make any sense? I think as in all things parenting, we need to give each other more of a break. I don't think that most parents are out there purposely being permissive. I think we are all just trying to do the best that we can with the tools and knowledge we have. Getting outside judgement and advice from people who barely know isn't really that helpful, and actually only makes the situation worse. It makes us feel as if we "should" be doing something else, which stresses us out, which takes away our ability to be as patient as we would normally be, and it breaks things down sooner than if the situation is allowed to naturally work through the way we do it.

Just give your fellow parents a break. Give them the benefit of the doubt that we're all just doing our best. If we invite you in, and ask for advice, by all means, lovingly offer your thoughts. But really, you can't make any of that happen without a relationship and an invitation. It just comes across all wrong.

Tuesday, November 10, 2015

Non Verbal Autism

So, I don't really like to talk about autism in relation to "function" or "severity". I honestly believe that autism is for a reason, and to compare or describe some people as being "severely affected" or "higher functioning" sounds so harsh, as if someone who can't speak, for example, is "less able to function" than someone who can. I don't believe that. I believe that even those who aren't able to speak have a lot going on inside, they just haven't been given the tools to let that out.

I think in recent years this has come a long way. With the invention of special computers and programs to help these people who cant speak have an outlet of communication, I think we are starting to see proof that these people have active, exciting minds, they just aren't able to speak for some reason or another. 

I think it is fantastic to give these people the ability to speak. I think it is beautiful that we are finally saying that, okay, they can't speak, but their brains still are going a million miles an hour, lets get them hooked up to a computer program and give them some tools to speak to us from where they are at! 

It really isn't that different from deafness, or blindness, or Helen Keller, is it? Even Helen Keller found a way to communicate thanks to an understanding person or people who found a way to meet Helen where she was at her ability of function! We should be doing no different to autistic kids. So they can't speak. So what? It doesn't mean that they are stupid, or brain dead, or mentally handicapped. Meet them where they are. Give them the tools, whatever that means individually, for them to communicate. Stop focusing on how "disabled" they look, and start being creative and thinking about what they can do! 

I think the two links I posted in the beginning of this post are a good place to start talking about these things. We DO tend to judge all autistic people as WE think they are. We have a LOT of learning left to do!

Tuesday, November 3, 2015


Sorry that there has been silence on my end! I didn't mean to let so much time go between posts. 

I guess I would say things here are going good. We started homeschooling again a few weeks back, and we are finally getting into a groove. The first couple weeks it took all day just to get and keep him motivated and do the work. Now though it is down to a manageable 2-3 hours, which is what we like, even though sometimes that 2-3 hours goes over lunchtime and we have to pause for lunch and nap. 

Yes! Nap! I started lying down with little B girl to get her to nap. She really needs one still, if she misses it she ends up falling asleep at supper, then she wakes with night terrors and wants to stay up super late. Naps help her a lot, and though I have to stop what I'm doing to put her down, it is worth it. Heck, sometimes it is nice for me to lie down too and get a short little catnap, and I'm sure that's something I will be having to do when the baby is here anyway.

So, the baby! Things are doing find. The "big" ultrasound pretty much put all the measurements right exactly on target, or within 2 days on either side of the due date. So everything is just perfectly fine there. Boring boring, as the midwife says, and that's where we want to stay. No surprises, no crazy stuff. Just boring. I'll see her again Thursday this week.

I'm to the point now where I wanna meet this baby! Finally! We did not find out if it is a boy or a girl, and we have a boy name, but the girl name is still up in the air, though I have one picked, Jeff doesn't seem to like it as much, but if nothing better comes along, then I guess that's what it's going to be. ;) We will see how it goes, I still feel confident that I don't care either way. 

Sometimes I think of something that still bothers me, like where am I going to put this baby's clothing?! We have 2 bedrooms for the kids and they are both filled with clothes for the kids of course. We've been trying to find room for and go through some things that we had stored at my parents, so thats taking up quite a bit of space in closets as well, which makes me nervous too because, really, there's a third kid coming and we're going to eventually have to have a place to put its stuff! Obviously, some major purging is going on around here. I don't mind that, because I am a kind of organizing, purging machine most of the time. We have never gone to BIG town without at least one bag or box of stuff that is getting rid of. I'm always deciding I don't need things, or reorganizing, or sorting through.

I'm glad we have a small house and even smaller storage spaces so that we don't really end up with much for hoarding. But right now, I'm feeling as if I wish I could get some temperature controlled, safe, mouse free storage location going. There are just some things that can't sit out in a box all winter, or all summer, or between temperatures, or whatever, without getting kinda yucky. It's a one story, double wide trailer. That's it. The garage is not temperature secure enough, and moisture/mildew/possibly bugs have already ruined one whole box of stuff, I don't think I'd be excited to have that happen again. 

So I've been trying to sort, reorganize, rebox, reshelve, and plan for where things are going to have to go. It is going okay right now, but I feel like it's going to get stuffy around here. I guess we will have to eventually build some sort of addition onto the house or something, but that is easier said than done. So one day at a time, one box at a time, I guess we will eventually figure it out. We have to, right?

Still trying to figure out a few things with the boy. Just the constant procrastination, or lack of motivation to do what he needs to do, or whatever. I feel like if he would just do it and get it done, then he could be back to whatever he wants to do, but he just puts it off and when it's something like homework or dishes, where I need it done so I can do something I need to do, then it really gets on my nerves. I just want to get it done, and he is reading or playing somewhere, or in the bathroom. (What is it with guys sitting on the toilet for hours? Don't they know it causes hemorrhoids?) 

But anyway, I think things are looking up around here. I feel better, I'm happy with the choices I am making and encourage that I'm through the hard emotional stuff dealing with the unplanned and surprise of this baby. I'm so glad for that. I want to get some things set up so I can have some meals prepared for myself so I can relax a lot more and not have to worry about food at least for a while. I'd like to say that I would wish I didn't have to worry about money, but that will never happen haha! That's ok, one week at a time. 

But anyway, that's a check in for now.

What would you like me to write about? 

Sunday, September 6, 2015


I have never understood that whole "cry it out" method thing.

Even when I was a little kid, I could not STAND hearing a baby cry. I would rather hold any baby for any amount of time, than hear them cry. Everything in my heart, soul and body cries out to stop the baby's sad cries. 

This, of course, has carried over to parenting. We have only used any version of CIO once or twice with our kids and that was times where we were at our wits end or something, and we could properly judge that it was the best thing in that situation, and when we got our ears back we went back for that baby! 

However, there are some times where the crying will not stop. I'd still rather a baby cry in the arms of their loving parents than alone. 

But what I am specifically getting at today is a kind of crying that is unlike any other. That crying is due to night terrors! 

Night terrors are when a baby or child wakes up crying, and seemingly will not stop. This can last from 10 minutes or longer, and usually happen to kids under 5. There also appears to be a genetic connection, just like autism, which does not surprise me. I also wonder if there isn't a connection to autism itself. 

There have been the same suggestions to how to deal with this for many years. It seems they know no more now than they did when I was a kid, or even before. 

One way of dealing with it is if your kid is a repeat night terror kid, to wake them up before they would wake up with the terror. So if your child usually has a night terror about an hour after they go to sleep, you would get the up about 45 minutes after they go to sleep, and take them to the bathroom or give them a drink. Just something little that is enough to maybe break the cycle of the terror and maybe avoid it. 

There was a period of time with my son where we would wake him up and take him to the bathroom before I went to bed. That seemed to work. Also, for a while when he was potty training, if he woke with the night terror and I took him to the bathroom, it would almost seem as if that was the cause (at least at that point), and it would cut it short or stop it. 

But I would also like to say again as I was in the beginning of this post, I can't stand the crying. And having no real way of stopping it makes it even more frustrating for me. I just want my babies happy and peaceful, and a night terror is neither of those! They're worked up, and I get worked up, and no one is having a good time and sadly there's not a whole lot one can do! I have tried with my daughter taking her to the potty and she cried even harder (and didnt potty either). 

It is pretty confusing too because their eyes might be open and they might actually act and look like they are awake, so if you try to ask what is wrong you get to convincing yourself they could actually answer (and they can't)! And all you want in that moment is for them to tell you what is wrong, so you can make it better!

Sometimes it almost looks like they can see something scary! I will tell you that I have often used prayer and talking to Jesus to get through this because it sometimes seems so convincing that they are seeing something I can't see. That, in and of itself, is pretty freaking terror inducing, even for me. But the good news is that if and when I finally think of that solution, it usually does the trick. Strange.

Anyway, I just feel so badly for babies, kids, and people in general who have tears. Sometimes I don't know how to react to someone crying, especially if I don't know someone well. I don't want to seem strange or make someone uncomfortable, or them mad at me for stepping over a boundary. With kids, though, there usually isn't the same hesitation, I feel deep sadness for them and my heart just aches. Of course, worse with my own kids.

I'm going to assume its a sound sensitivity. LOL

Wednesday, September 2, 2015


I just want to post this here because I don't ever want to lose it. I hope it works posting it this way.

This could be a great calmer, not just to watch, but in person.

Tuesday, September 1, 2015

It's All On You - When & How The Medical Approach Doesn't Work

I don't know why I am still surprised when people, especially those in the medical related field, don't understand autism. For some reason I keep thinking with all the people out there talking about it now, that the medical community would actually be listening and making note of the things being said BY AUTISTICS. Unfortunately, it seems as if none of this is actually happening. I don't care how many times you hear "autism awareness", people dont UNDERSTAND autism, even though almost every single person is "aware" of it. 

Most of the frustration I have that they don't understand it comes when I'm having an issue. Now, for a NT person, they have their standard protocol of medication or doing this or doing that. However, those things do not work for people with autism, for the most part. Autism requires another angle, another perspective, and a greater understanding on the part of the medical professional. It requires they break out of their mold, and think about it as an individual case, instead of a "this is what we always do in this case" way. My brain is literally, physically different than an NT person, and using the same approach to a brain issue is not going to serve me the same way. 

Also, as a constant learner or seeker of learning, I am always looking for answers on my own. I am not the kind of person who shows up at the doctors, takes their advice or suggestions or words as THE ANSWER, and goes home satisfied. More often than not, I am left disappointed, discouraged, and this lingering feeling that I was not heard, understood or served from an individual point of view. Time after time I show up with a concern, they run it through their mental database, give me their standard solution or suggestion, and close the case as solved, meanwhile I'm left with the struggle and a gut feeling that there is more to it than that. I don't fit into their perfect little medical manuals. The answers to the problems I have won't be found in their books, because people like me aren't found in their books.

I wish I could change the world, and make the medical community actually open up more to autistics, listen to what we have to say, and actually adjust their policy, protocols and "solutions" to the things we want and need, instead of just tossing us in the batch with all the other NT people. There are so many of us out there talking right now, and it seems like we should be heard and treated as the authorities of our condition. We should be the experts in the field, not some medical doctor who spent thousands in school to book-learn what we LIVE. WE should be qualified to speak on our own behalf, to explain what it is like for us, and to be treated differently based on those experiences, not just thrown in the batch and treated as if all solutions affect us equally as NTs. We are literally different. All people are different, but autistics are different in very specific ways. I feel frustrated that we know this, but the medical field will take decades to catch up to what we are already saying. They rely so much on their precious research, that they forget to treat us based on our needs TODAY, simply because they don't have the "documented proof" that we are different enough to deserve it. 

I've seen picture after picture of how the brain activity in autistics is different than in NT people. I think it should be easy then to determine, then, that our brain's physical and chemical structures are different enough to deserve different approaches. So you might think my depression needs medication, but you don't really know or understand what it feels like to me, personally, to even consider being on a brain altering drug, not to mention how it feels to actually be on it. You cannot and will not convince me that a drug will help when it actually increases my anxiety and depression to even consider being on it, and then those feelings are just confirmed by actually taking it. The one thing I need LESS of when I'm in a down period is something that makes me feel worse. 

We are VERY smart people. We know what is available to us. We are not afraid of or ashamed of asking for those things if we feel we need something more. But when we say we DON'T want it, DO NOT PRESS US. We are smart. We will ask for it if we need it. Health is about more than just what you normally think or do, it is about making us feel like we are the ones doing the choosing, that we are the ones controlling our own health. You have to give us the freedom to initiate those things, or else it feels forced and unwelcomed. It also undermines your authority on the topic because you don't make us feel as if you are listening to our concerns at all, only that you're throwing your standard answer at us and expecting it to be the end all to the problem.

Anyway. When it comes to your health, or dealing with the medical community, you as the autistic are the sole authority in the situation. You know how you feel, you know your needs, and you have to be your own advocate. You have to say no when you know it won't benefit you, you have to say yes when you know it will, and you have to give yourself time sometimes to consider it, bounce it around your head, and own it. Yes, sometimes they are right, and things will be better, but sometimes you are an individual and you know yourself, much better than they ever will. Don't be afraid to do what's best for you, even if it doesn't jive with what they think. It's all on YOU.

Sunday, August 23, 2015

"Accessories" To Autism

First I would like to point you in the direction of this link. It is a short list of other disorders that often pair with autism. Please check it out!

This is something that I thought about today and thought maybe it hasn't really been written about (though I don't know, maybe it has). 

Here's the thing. You might know this one person who you're sure has OCD. In fact, maybe they are diagnosed with it. The link itself was pretty brief on OCD, but it did say that 30% of people with OCD also have ASD. Interesting. I wonder what those numbers would look like if they said how mnay % of people with autism have OCD. 

The thing is, I don't consider autism a disease. Autism is a difference. Just like one person might be able to do advanced calculus and another can read and speak in several different languages. Our brains are all different. Autism is just one "label" of a difference.

So, what my thinking is that because of the differences in autistic people, we are perhaps more prone to these other conditions. For me, I was also 'diagnosed' with generalized anxiety and recurrent depression and OCD, but none of them are stand alone conditions, they are, as the tester put it, "accessories" to my autism.

"Accessories" makes me laugh. Makes me feel like I'm all dressed up for a party. You know, one by myself, alone, at home or something. LOL

But in all seriousness, that is the truth. I have autism. That helps me understand who I am, how I think, why my brain seems to work differently than so many others, and the struggles I have, things like that. However, it also helps me understand why I am prone to anxiety, depression, OCD, or other things that I just might not be showing right now. 

I think that often there is a lot of misdiagnosis with people who have undiagnosed autism. I think  this is especially true in adults, and even more so with women. Obviously, adults have had their whole lives to "practice" or learn by trial and error how to manage certain weaknesses or whatever. And women seem even more prone to this, because we tend to mimic other people in the social situation around us, or whatever. This is why many adults are not diagnosed as adults. Doctors are just not looking for this. And most adults would not have been diagnosed as children because it just wasn't done back then. It was hardly something that was recognized unless there were severe difficulties. The more "socially acceptable/normal" looking autistics were missed, and I feel they still are. 

Anyway, so these undiagnosed adults end up at the doctor with depression or anxiety (or pick your favorite from the list), and they are often treated FOR depression with drugs/medication. I'm sure some of those people also get therapy or counseling to help their struggle. Sometimes this alone may work, but for some people it can make things worse. Drugs always made me feel worse, more anxious than ever. 

However, I have talked before about how diagnosis is the cure. Knowing something like this about yourself is very helpful because you can put things in your life into perspective. 

Depression can be a scary thing, because you don't know how low it will take you, or for how long. Though it is said that many people with autism will feel as if there is no end to their struggle, for me knowing I have autism has really helped me to understand that because it is just an "accessory" to my autism, I will fall into it now and then, but I will always end up back out again. I make sure to take care of myself enough to get help if it lasts for too long, but I know that it's just a part of the fact that i struggle with some parts of who autism makes me in relation to the world. And that's ok.

I honestly can't think of anywhere that this kind of thing is more brilliantly revealed than in Sheldon. I've written on Sheldon before, here, here and here. What I would like to say today, is that they didn't create Sheldon to "be" anything specific. However, it isn't hard to see that he isn't your "normal" character. You start picking out different characteristics about him that points to certain diagnosis. There are a pretty good list of things you could come up with. Here is a wiki link and another wiki that I think covers a good bit of Sheldon, and here is a good link suggesting autism spectrum. Here is a link talking about a few different disorders relating to Sheldon's behaviors. 

The point is, the character was not created to "be" anything specific. But his behaviors and whatnot fit in to quite a few. He is just like many adults in the world today, undiagnosed and living their lives. They have difficulties and struggles and other conditions may present themselves stronger than others, like OCD or personality disorder. But we can't really isolate those things on their own if they are really a part of something else. 

So, like I said, I have generalized anxiety, but it is a part of my autism. It doesn't stand alone. It is a part of the whole picture. If we didn't know the whole picture, I don't think we would be able to treat things as effectively. 

Also, it is important to know that just because someone shows this disorder or that disorder, it doesn't mean they aren't autistic, just like having them doesn't mean they are autistic either. It is important to listen to someone who feels they fit into autism, because if they feel they do, it is likely they are right. THEY know themselves. THEY know the daily struggles and inner thinking and stuff that makes them who they are, much more than anyone else ever will. Telling someone who thinks they have autism that they can't possibly is very discouraging and hurtful. We have to believe people and listen to what they have to say. I can't think of any reason that someone would say they have a difference like autism without having a darn good reason for it. You might not know that part of them, you might not know what is going on in their heads or daily life. You don't know what it's like when they are alone or at the end of the day when they are at home. You don't know. So you need to keep your assumptions and stop thinking that it would make someone feel better to discourage them from thinking they have autism. It doesn't make them feel better, it makes them feel worse. I know this first hand.

Anyway. I hope this post isn't too long or too scattered for you tonight. I had to stop and start. HA! My head is all over the place today too so I felt like I rambled and got random. 

Tuesday, August 18, 2015

What'd You Say?

I need to google some more. Though I did get a message from my E-friend, Aspie Writer, and I guess I'm not alone.

I can't hear. But I can, really. I can hear so much. I don't think I would say I have super sensitive hearing, but I hear everything even when I'm asleep (at least it feels like it!). 

I hear everything, but nothing. 

I wonder what the science is on hearing and autism. I know I have read things about it, but not lately, so I'm not remembering what they all say. But I think that basically, we can't filter out which is important to hear and which is not. 

A huge example, since we spend so much time driving - we live in the middle of nowhere - often B tries to talk to me when we are driving somewhere. I don't like AC, and it died again anyway, so windows open. Right next to my ear. BBBBBLLLLLTTTTHHHH.

He tries to talk and I just can't hear him. My brain can't filter out the blowing air noise so I can hear him talk. I think that's how it goes.

OR, even if I'm thinking/stewing/ruminating about something, I'll be having inner conversations with myself or imaginary versions of people, and I can't seem to hear anyone talk. 

My husband has very sensitive hearing. We 'joke' that he could hear a mouse farting on the fourty, but it's not much of a joke, he probably could. My son has had sensitivities to sound since he was born, LOVING trains, but always covering his ears, or freaking out a little when they sneak up on him unexpectedly. I, on the other hand, might not hear someone talking to me right behind me. 

I wonder if somehow I ended up overcompensating and blocking out EVERYTHING because I couldn't figure out which thing to listen to. I know that I was pretty good at that in school, because I don't remember hearing much crap in class. Maybe I got tired of hearing them talk about me so I just learned to block it out?

I remember as a kid that one of the biggest thing that made my dad mad was not hearing him. We would get in so much trouble, when honestly, I had literally not hear him speak at all. No use explaining that to him, he was just too mad. Now I get it. I do the same stupid thing. I hate it when the kids don't hear me. I hate it when they just don't hear me! I really really try to remember some "Mark Gungor" style rules, get into the same zip code! I've gotten better (!!!) to where at least if I can't go to him, I will at least wait until I call him to me before I give him any kind of relevant information or instructions. But I still don't like not being heard.

Incidentally, I don't like being "heard", where people don't understand what I'm saying either, but I digress.

I wonder how other people on the spectrum deal with hearing and sound. Any chance an ear doc helps at all? I feel like if I go get a test, I'm going to pass with flying colors. I'm sure I could hear beeping with sound blocking headphones in a silent booth. That's not when I have trouble. Though, when do I get to sit in a silent booth anyway? 

Let me know if you have any thoughts on this in the comments!

Sunday, August 16, 2015

Completely Overwhelmed, Regression and Exhaustion

I wonder if I'm the only one who deals with this. I'm going to say that I probably am not. I don't know how much out there is written about this particular subject either. I know it was new to me when I read this article recently.

I love the way that article lays it out and describes it using a power grid as an example. 

What I would like to mention is what it feels like, to me, right now, dealing with this particular situation.

I feel frustrated. I know I'm capable of dealing with dirty dishes/house, laundry, or a sick kid, or going to a part time job. I know I can do these things because I have done them in the past. So there is a lot of guilt and self shaming because I should be able to still handle this stuff, shouldn't I? So I blame myself for not being able to handle it, or for disappointing people when I cant function or when I'm not able to do something I said I would do, or whatever. And I feel like I'm letting down my husband and my kids because then they have to start filling in doing things I would normally have handled. Or, maybe they don't get played with as much during that time because I just don't have the energy or ability to handle doing anything except basic living functions, making sure I and they are fed and clean and protected and whatnot.

The hardest part of living daily in this autistic regressive state is that if ONE little thing happens on top of it, its like the straw that breaks the camels back. The "world" falls down because I just can't carry any more than I already am carrying. So, all the kids need to stay healthy and not get hurt or sick. The money still has to come in in just the right amount so the bills get paid. I can't burn the food. Sometimes, I can't even comprehend going to work or town. Or even outside.

Every time life throws you a curveball, you might readjust and regroup and be fine. For me, though, I have to totally rewire my brain or something. Instead of the speed of DSL internet upgrading from Windows 7 to 8, I have dial up doing the job. It takes longer, and in the meantime, nothing else will operate either. Get it? 

Anyway, I just get tired of "one more thing" happening every time I think I'm getting a break. And I'm tired of things overwhelming me so much. And I'm tired of feeling guilty that I can't be counted on because if one little thing happens, my brain is toast. There's nothing I can do to change any of this, but I still feel terrible for failing myself and others. 

Friday, August 14, 2015

Denying Autism & Autism Speaks

I feel I should explain where I'm coming from here, but the title should be pretty self-explanitory. There are people out there who simply deny autism, whether in themselves, their children, their friends, their friends' children, whatever. It isn't so much that they deny its existance, but that they can't believe ____ has autism, despite the signs that might be obvious to the parent, or a doctor, or someone else with autism, or whatever.

I've spoken on this before (I think) that many people did not believe I had autism. They believed I was 'too social' or something, or that because I could socialize, that I couldn't have autism. There were people who thought my son was just a typical boy or something, or that somehow I didn't do parenting right or something. Perhaps they never stated that outright, but it seemed or felt implied.

What I really would like to focus on though, is the fact that denying autism is harmful. It is harmful to the person/child with autism, it is harmful to the parent or friend dealing with it, it is harmful to the family dealing with autism, it is harmful. 

I believe that a huge part of this denial comes from the influence of groups like "Autism Speaks". The reason I believe that is that Autism Speaks is a group that likens autism to something we should be scared of, something that is destroying kids and families and people, and something that needs to be eradicated, like polio or TB or some other disease.

The fact is, autism never killed anyone like a disease would. Autism is just autism. Autism is just a brain difference, a different form of processing system, like someone may have Windows 10, but someone else might have Vista, or a variety of Apple or something. We are not all intended or able to run on Windows 10, and that should be ok. But to groups like Autism Speaks, it is NOT ok, and it must be cured, and upgraded in order to have validity and function in the world.

The mentality behind Autism Speaks is to be able to identify autism as early as the womb, and therefore offer parents a "choice", like is the case in Down's Syndrome. There are still people in the world who will abort a pregnancy based on a genetic test claiming there is a disorder, even though there are false positives and they might be wrong, and the child may have been "typical". 

So, basically, Autism Speaks is saying, through their words and actions, that autistic people have no value to society, they are a burden on society and families, and we should eradicate them through cures or any means possible.

If you know me personally, is that really a choice you want to be forced to make? 

If your child is like me, is that really such a bad thing? 

If it is a possibility that your child might have autism, or your friends' children, or the child of a family member, would you really rather not have that child exist at all?

Would you rather ignore and reject any connection or characteristics to autism, instead of getting the early intervention that many feel is life changing?

We did not get early intervention here. I was 29, diagnosed as an adult, after years of self diagnosis. My son was also older than would be considered "early intervention", but even in hindsight we knew ahead of time that this was going to be an issue, and we didn't feel that it was necessary at previous points to seek for help, but when it became unmanageable in certain ways, that was when we needed the diagnosis to help us to be able to find appropriate help for the issues he is having specifically. Would I have done earlier interventions? Yes. I think I would have, knowing what I know now. It might have been easier to get help ahead of the problems we are having, that would have made the past 2-3 years a lot less difficult and stressful. I think I wished we had the knowledge all along so that we could have met the struggles head on armed with the tools and resources to avoid the huge fights and meltdowns and struggles. We might be playing a little catch up right now, but I'm still glad we are doing all this ahead of the teenage years and hormones! So we are still intervening early.

The point I'm trying to make is that we need to stop fearing autism. Autism is just autism. You would never stop loving your child, what difference does it make if they have autism, and both you and the child need some help to make it through some of life's complex situations? Really, what difference does it make? Are you going to stop loving the child or something just because autism might be a huge part of who they are? It really sounds like nonsense when I say that. But with the mentality that autism is something to be feared and avoided at all costs, that is what we are saying. We are saying that if a child has autism, that all of a sudden they are different than they have been, even when all along that IS what they have been. We are saying that we are glad that it's "someone else's problem" and that we would never want to have to deal with that, when maybe you ARE dealing with it. Is a diagnosis of autism really going to change the fact that your child is who he/she is? 

No, it wont change anything! But it will help open a world of understanding for you that you never had before. It will open a huge amount of resources and people who can help you understand it from a first person viewpoint. And that's another reason Autism Speaks cannot be trusted. They have never had any person with autism on their board. They have not asked for, accepted, or listened to the voices of those of us with autism. They have rejected one such person who tried to be involved in their organization in such a way that he quit and could not work with them anymore. Google it. 

The saddest part is that the mentality that Autism Speaks has spread is prevalent and everywhere, and most people don't know it has originated in a group that has no representation with autistic people. I have yet to find or hear of one single autistic person who supports or agrees with Autism Speaks. Yet people continue to believe that autism is one of the worst things that could happen to a child, even more so than cancer or death, to the point where parents have been led to think about killing their autistic child, and some have actually done it. Death was preferrable to a living child who has autism. Imagine that. Imagine if my parents had done that to me, or I to my child. Would you really drop your kid off a bridge because they have autism? Could you imagine the terror in the heart of that child? 

This is the mentality Autism Speaks, and groups like it, are spreading. If you have a child with struggles that keeps pointing toward autism, stop fearing it! Stop saying "that's what happens to other peoples kids". Stop saying "my kid is too ____ to have autism". Stop saying "that could be the worst thing to happen to my child". Think about what you are saying about those of us who do have autism when you say or think those things. Think about how you are internally or even externally stigmatizing us. And think about how autism will eventually catch up with you one way or the other. It certainly does not go away. Someone along the line will see it, even if it is the child themselves after they have grown up and end up searching for answers to why their life is what it is. Wouldn't you rather your child know themselves all along then to struggle through life feeling so isolated and different and not know why? Wouldn't you rather the people around them know that they have certain differences that make them a certain way, instead of just thinking they are a brat or insensitive or weird or something? 

Don't deny autism. Don't deny it for me, for my son, or for any other child or adult with autism, even if that includes your own.

Friday, August 7, 2015

Autism, Homeschooling and Socialization

I can't even begin to tell you how complicated socializing is with autism. 

I don't know where to start. 

For the most part, I think every single person on the planet WANTS to connect with others. Some try harder than others. Some need more than others. But I think we are all intended to be a part of some kind of community, whether large or small. 

I am pretty much on the introverted side, and I prefer time alone to time with people, but I still desire to have friends and talk and stuff, sometimes more than other times.

From what I can guess so far, my B is the opposite. He wants to talk to people all the time. He could literally talk all day long if you'd let him. He would talk to anyone, anywhere. Maybe more so if I don't know the person, it seems like! I said hello to someone in the store today and he clammed up, where a complete stranger he would have initiated the conversation and I would have been begging him to stop so we could move on. 

We're homeschooling, and more often than I would have expected, I get "that question" - what about socialization?

Seriously. I'm even more surprised when the person asking that question knew me when I was in school. I never quite know what to say, or the right thing to say, but I usually end up saying the truth: he has friends who live nearby, and family, and we do this program or that group. It never sounds adequate in my mind, and I'm left wishing that I had said more, but I don't really need or want to get into long philosophical conversations either. Because really, there we get into the spot where I'm seemingly trying to convince them of something they don't believe or agree with. 

The fact is, we have autism. There is no amount of socialization on the planet that will help that. Those same things will always be there, no matter if he's homeschooled or public schooled. Having gone through public school myself, I KNOW what kind of socialization goes on there. It's "Lord of the Flies" the real world. I'm not even kidding. It's live or die, fit in or die, join the crowd or die. 

Like everything there are kids that make it through unscarred. I was not one of those kids, and to keep holding onto this belief that the ONLY way for a child to learn socialization is to go to school is very harmful. And really, what is more important anyway? Learning academics and life skills, or learning how to avoid being tortured by fitting in? Learning how to balance a checkbook (and the math skills that come with that) or learning how to reject your family's values in order to be accepted by a bunch of kids who won't even be in your social circle anymore after you graduate (for the most part)? 

We're focusing in the wrong direction.

I also get frustrated, because this is the ONLY thing that we think kids have to learn by being with other inexperienced, immature people. 

Do 6th graders go into the 10th grade classroom and teach them algebra (a class they themselves have not had yet)?

When you want to hire a mechanic, do you just call the kid down the street who's favorite thing is cars, or do you call a mechanic who trained both academically and with other more experienced mechanics to learn their job? Seriously?

What makes us think that putting kids together in a building teaches any form of good social skills? They are ALL lacking those skills. Who isn't? ADULTS. Adults have had years of practice, they've gone through adolescence and growing, and have their fully matured brain to help them logic things out. Kids don't have that. To expect them to learn anything by plopping them together is really not sensible is it? Wouldn't they be better off learning from adults? Especially adults who they have a relationship with?

Sure, teachers can do this. But is it effective to have 30+ students per teacher? And that's not even counting the majority of students who never connect with any of their teachers at all! Some kids just will not find a staff member whom they trust enough to glean any skills from. It is not working - look at the kids in this country! What we are doing is not working for the majority of kids. It didn't work for me. It wouldn't work for B either. 

I'm just really weary of hearing about socialization. It's like someone said "we have to have public school so kids get socialized", meanwhile, the kids were plenty socialized from having neighbors and family everywhere all the time, they were learning from their parents and their uncles and their grandparents and yes, the other kids in their family's social circle, under supervision of the same loving family members and parents that are guiding these kids, because they love them and want whats best for them. I said some kids will never connect with a teacher, but even more so, some teachers will never connect with their students either! It goes both ways. 

Autism is a different world altogether. I may have been more social as a child, I don't know. But what I do know is that the way I was treated in school, I quickly learned that I was not accepted the way I was, and I quickly learned to be afraid to talk. I quickly learned that talking to my peers was not safe. I want more for my kid than that. I know he's annoying when he goes on and on. I want him to learn how to manage that through the safety and love of our family, not because he was tortured and teased by his peers. What good would it do any of us to send him to a place full of people he will never really know, full of sensory overload and overwhelm, to be tortured socially? That's not socialization. That's the opposite of that. 

You may want to play the devil's advocate or something right now and say that I don't KNOW that it would happen. But seriously, he's not much different than his mama. The kids in public school are related to or the kids of the ones who tortured me! We were involved in ECFE for a few years and even then I saw my son playing alone, and everyone else just passing him by. Interactions were passionate and stressful for him. Just a couple hours of that kind of interaction and he would lose it the rest of the day. I don't want my kid to have to hold things in all day, and come home and explode on this family because he's been just barely surviving all day. 

I know what autism is. I know what autism means. I know what socialization does to kids with autism. I know what socialization does to kids like me. I don't want him to have to spend 5-10 years of his life trying to readjust to the idea that people might actually like him because it isn't high school anymore. (I've been out of school for 14 years now and I'm still surprised when people like me.)

Who should have to live like that?

Just my thoughts and stuff pouring out today. I don't think public school is a nightmare for everyone, and that I know even when you don't want to send them to public school, you sometimes feel too overwhelmed, like you don't have a choice. I just want to say, some kids do fine. I just know I want something different, something more, something better, for mine. I want things to go in a different direction. There are so many other reasons I favor homeschool over public school and even if my kid never learns to "socialize", those things are FAR more important than that anyway. 

Tuesday, August 4, 2015

Autistic Regression

Recently, I've been having a hard time. I may have said that here before. One particularly difficult evening I was talking to/unloading on a trustworthy friend, and this link came into my facebook feed.

And once again in my journey, I was blown away.

This describes exactly what has been happening to me. Spot on. 

I'm not even waking up rested and ready for another day because I am working too far above my capabilities every moment of every day. No amount of alone time has worked to relieve my complete overwhelmed state. My bucket is sitting under a firehose on full blast, and it's constantly overflowing. I don't have any air. I'm drowning.

There are just so many things in the air right now. I'm stressed and overwhelmed and a surprise pregnancy of course has put this all over the top. 

It's not like a plate of pancakes, where you add one and it's just one too many. A surprise pregnancy is like a MILLION things too many, all at once. 

I know, "intellectually", that God will give me the strength when I need it, and I don't need it right now. There's also no way to know if I have it until I need to use it, and of course, there's no way I can test that until it's time. 

Unexpected things always throw me for a loop, and I hear that is not uncommon with autism. It can and does cause considerable stress, anxiety and frustration. We have to regroup, redirect ourselves, reorient our lives. Depending on the thing, of course, that could mean taking a 5 minute break and breath and just go for it (like an interruption or change at work). This? This is no 5 minute break thing. 

I'm 12 weeks along. Almost 13. Thats 7-8 weeks to "get used to it". And it hasn't happened yet. I don't know when it will, but I'm hoping it will be sometime before February. 

I feel pretty confident that the counseling program I'm going to be doing will help. I was really relieved when they came here for 'intake', that they know what I'm talking about, and what it's like specifically to be going through things with autism. See, you might think I act or look so "normal", but I'm completely and totally autistic. Just because I can pretend for some short period of time in front of you doesn't mean that I'm normal. I still have all the same struggles that a child with autism has, I've just had 32 years of practice to hide, ignore, avoid, and otherwise try to avoid losing it. I can manage it for a period of time. But it's still there, using up spoons, right under the surface.

Anyway, I'd like to write a post about counseling, and I will eventually. But for now, I just wanted to share this link because it's insanely accurate and exactly what I needed. I have felt a little relieved since I read it, at least it's ok, normal, and I'm not losing my mind, or sinking in depression. This is just normal, for me. This is just something I deal with now and then, on and off, throughout my whole life. I'm going to have tough times, and I'm going to "lose skills" during those times. I'm going to lose my ability to deal with things, and this is just what it is. It sucks. It's super hard. It's really annoying. It's really .... just... I don't know. You just have no idea what people with autism go through unless you're autistic. (Which is the major factor in why Autism Speaks SUCKS.)

Anyway, let me know what you think of this link!

Saturday, July 25, 2015

Comments on a Blog Post: Autistic Regression and Fluid Adaptation - Musings of an Aspie

I've been having a hard time lately. I've been really tired, and not feeling well, all the fun things that happen when you get pregnant.

But it's been more than that. I've felt kinda paralyzed. Got ahold of the therapy place where we got tested, and even expressed my concern with the distance and money and stress of driving two hours one way to get to them, and they have an in home program! I start this week. B starts next week I believe. This is perfect, and a blessing, and I can't believe they will pay someone to drive for 4 hours just to see us. It's amazing and a miracle, and I can only thank God for a program like that.

That being said, it can't come fast enough. I've really been struggling and today I felt pretty down. I'm glad it was Sabbath because that meant some peace and quiet maybe. Something came up so I was pretty bummed to begin with, sadly.
But I stayed home and watched a sermon from 4 years ago. And I fully believe that good sermons are timeless, and this was one of those sermons. I'm sure 4 years ago I could have gotten something as big out of it as I got out of it today. And I could see how it could fit into the lives of several other people I know, I will be passing it on.

But tonight I was having a meltdown of sorts and kinda "word vomiting" on a patient, Godly friend that I felt safe to "word vomit" on. THEN, THIS LINK came into my fb feed. 

Talk about a revelation!

I guess I would probably never have thought to describe anything I have been feeling in this way. I would have never thought that there was such a thing, I guess. I was just under the assumption that the surprise of an unplanned pregnancy was just putting me into a new level of depression and anxiety (remember, those are "accessories" to my autism), and that therapy would probably be recommending some drugs, which I hate because they make me feel worse. Drugs are just too much for me, and probably are for most autistic people. 

But THIS?! This has kinda rocked my world tonight. This is precisely what it feels like in my brain. This idea plugged right into my brain and said "BINGO". 

Right now, I'm understandably under a lot of stress, anxiety, AND all the fun symptoms that normally go along with pregnancy like sickness, exhaustion, out of breath, whatever. And any woman who has been pregnant can attest to the fact that pregnancy steals enough of your brain to begin with, but put all that other stuff on top of my ASPIE brain, and you have definitely got too many air conditioners working overtime right now, and its time for a blackout. 

I KNEW I was better than this. I KNEW that I used to be able to handle things better. I've just lost that ability right now. It feels good, I guess, to think that it's not permanent, and I'm readjusting like everyone does, and that I will likely find some kind of handle on things. I'm really bad at asking for help, (not that I have many real capable people to ask to help me in the first place) so I think maybe I need to improve on that somehow. There are other things that I know play into this, that I know I NEED to change too. But to know that my list of things is a bit shorter is a relief. I feel lighter. And tired.

"When this happens, an issue that was previously “fixed” can suddenly appear to be “broken” again."

So I can "fix" it again, but probably in new ways. And yes, it might get "broken" again. 

I just hope these therapy people have some kind of understanding of this when they come. But if they don't, I'm keeping this blog post handy to use to give them some info. Because this makes a difference to me. I'm sure it can make a difference to someone else too. 

Saturday, July 11, 2015

People Don't Get It

I know people who have small dogs. I have a big dog. And yes, it makes life a little more complicated when you want to go somewhere. Especially if it's a little dog, from what I understand. Maybe either way if you live in town (which we don't, thank God).

The problem is that you can't leave them with anyone else, you have to either take them with, or get some kind of doggy day care or something. One costs a lot and your dog might come home sick, and the other makes your life complicated, again, because you gotta drag a dog around and keep it from dying in your hot car or something.

Now, I don't want anyone to take this the wrong way. Please just relax, I'm only using it as an example.

But having an autistic kid is kinda like having a small dog (or a big dog in town). You can't leave them home alone, you can't find someone who will watch them for you, or you don't feel confident it will go well if you do, so you have to take them with you wherever you go. Which makes life complicated.


But isn't there some truth to it? People who have kids with autism probably know what I'm saying. It is really hard to get self care on a daily or weekly basis, but even once in a while when you want to get away together as husband and wife, life gets complicated.

You want to be sure that whoever watches them can watch them in a familiar environment. New environments make them very anxious. Even environments that are familiar have different smells, sounds, foods, cooking tastes, routines, rules, etc. Again, anxiety. Sensory overload. Meltdown.

It is usually preferred to find someone who would watch them at YOUR HOME, where the autistic person is most comfortable and at ease, where they have their own toys and their own bed and their own smells and foods. However, like with watching your dog, no one wants to make things easy for you and actually do that. They don't want to be inconvenienced to be out of their homes, and I guess I can't blame them because I don't want to watch someone else's dog, or kid, in their house either.

Worse, if they refuse to do it because you won't let the child stay at their house. As if it's some kind of justified punishment for you if they use that kind of mental/emotional blackmail to get their way or something.

I'm not really speaking out of any specific person or situation. Just things that I perhaps mostly assume about what people would say or do if we were to ask them. Sure, some of it is pretty realistic, but I'm not as upset about it as it may sound. Life happens, and autistic kids need to sometimes just go with the flow even if the flow sucks for them.

We aren't even the kind of family who go away a lot. I didn't have kids so that I could constantly be hopping around town, state, country, world and leave my kids behind. If I go out of state, my kids come with me because why would I deprive them of the excitement and fun of seeing someplace new? And we have been out of state several times (though not yet with Bonnie, to be truthful). 

But once in a while it's still nice to go away. And this year is one of those years.

We are never sure what to do when we make plans, because B has so much anxiety. We wait until the day before, and he has a meltdown because it's too close and unexpected and doesn't fit into his plans for how he pictured that day or something. We tell him a week in advance and he still melts down all week, and loses his mind about it because he's still so stressed. 

Ultimately, I wish he could just stay with someone here at the house. This is his safe place (how many parents can say that about their kids?) and he is comfortable here. He has his safe places, his happy places, all his toys, it's comfortable here. He has various complaints like smell, or the way food is cooked, about anywhere else. Then there are options we would never choose for other reasons than his sensitivities - I don't go into details on that. 

So you end up worrying about your kid, you know? Will he get any sleep? Will he have a meltdown? Will he use his no service, disconnected phone to call 911 to tell them that his parents went on vacation without him? (Yes. Seriously. Donate your phones, this feature is what helps domestic violence victims get help. They don't even have to have service to have 911 capability.)

And will they understand him there, or will they just think he's being a jerk?

See, that is probably the biggest issue leaving your kid with anyone, family included. Will they just consider him to be a jerk, or brat, or someone who just can't stand being inconvenienced or something? Everyone who knows us knows that he has autism, neither he or us have been shy about sharing that. He is matter of fact about it, so it doesn't bother him.

But really, unless you have a kid with autism, you do not understand what it's like. You do not understand the little mental whys and hows. You don't understand the little characteristics that make him struggle. Yes, smells, sounds and tastes that are different from what he is used to will make him gag. Yes, he won't sleep well. Yes, he is going to go into periods of overactivity out of sensory overload or high anxiety. Yes, when he plays he controls things because he feels so scared of what will happen if he doesn't - the unpredictable way that kids play puts him on edge and makes him nuts.

No, I don't expect you to let my kid bully yours, or whatever. That's not what I'm getting at. I just want you to understand WHY he's doing it. Then you can, if you choose, help direct him out of that anxiety, give your kid the tools to understand that he's not trying to be mean, and it really teaches everybody something. It teaches my kid to loosen up, and it teaches your kid to work with people who are difficult. And it helps you too, because I can guarantee you are going to come across autistic adults who are undiagnosed. I don't believe in this "increase in prevalence", but "increase in diagnosis" due to increased knowledge. And since with adults we just figure some people are "jerks", and they aren't causing trouble in class, adults don't get diagnosed as adults unless they willingly go looking for it.

Anyway. Just venting. Thought about the comparison today and thought it might make a good post. Do YOU have any experience, or tips for getting away without your autistic kid? Any funny stories, horror stories, anything? 

Sunday, July 5, 2015


I have daily anxiety. It is just a part of life for me. It is an "accessory" to my Aspergers. It's like the belt to your jeans. The top to your bottoms. Depression and anxiety just go hand in hand with who I am, and how my brain works. Perfectionism is stuffed in there too.

I don't like to let myself down, but I don't like to let others down either. And I have a tendency to think I can do things, even if it's too much for me. I somehow think I should be able to do it all or something. 

I haven't had an anxiety attack in perhaps years. It has definitely been since before I was diagnosed. I can't even remember exactly when the last one was, because I probably didn't recognize it as an anxiety attack. But I do remember the hyperventalating, and uncontrollable crying "reflex". 

Today things finally caught up to me and I finally broke down. I haven't been home in 5 days. Skipped right over my cleaning day, so the house hadn't gotten clean. Almost ran out of diapers with no exact plan to when I'm going to wash them (I did get them in this morning, and we didn't run out, whew). Didn't even make it to the grocery store on my normal shopping day, had to go after work today and in a hurry too since the hours of our local grocery store are frustratingly early on Sunday. After a long few hours at work, very tired, and upset stomach (thanks, baby), and a hip that has returned to popping out all the time, either thanks to pregnancy or work. And tomorrow (or tonight) I have to run to the CU so that I don't end up bouncing checks tomorrow in a bad way because I didn't have any idea when our new internet was going to go through. I guess I didn't realize we were, like, automatically signed up for auto pay, but apparently we are, and that was the same money I spent on groceries tonight too.

And I was going to work tomorrow.

I think I should be able to do all these things, but it is becoming clear that I can't. I hate letting people down, saying I would do things and now not being able to. OR even the guilt that I'm letting myself down, thinking I should be able to do it, handle it, but my system won't let me. I'm rather introverted by nature, but right now I would like nothing more than to crawl into a hole and sleep and not be bothered.

But I still have a family. And they have needs, like eating. It's already been a lot of work to find something I can stand to think of eating, and I have to cook something for them that isn't something I can handle so that I don't run out of things to eat... but kids still need to eat. And they need to be cleaned, and their messes need to be cleaned, and their dishes need to be cleaned and their clothes need to be cleaned, and the floor needs to be cleaned because even though it's just been swept, little B thinks her food goes there when she's done, instead of just saying "I'm done" - which I KNOW she is MORE than capable of saying. 

And they just need their mama too. 

And mama needs herself.

I have wondered what it feels like to people with autism or anxiety attacks to not be sure you're going to be able to keep breathing. I remember now. This was definitely an anxiety attack, and I felt like it was rather bad. Of course the tipping point was an inability of anyone else to make dinner without my instructions (they're on the box for crying out loud), and the fact that I never ask anyone for help, and the one time I need help or a break, it seems like it's too much to ask. NO WONDER I don't ask for help! How can you dare ask for help or put a "ball" down when you get treated as if it's just too much for someone else to step in for a while?

I need a wife.

This is definitely for counseling. I've been planning on it anyway, but now I'm going. 

It's not going to get better when I'm stuck under an infant, exhausted and overwhelmed and unable to manage going to the bathroom.....

I just can't trust that others will step in when I need help. I guess that's normal and common with ASD too. Doesn't make it any better, but it's true. 

I'm broken today. I'm breathing a bit easier but I'm still precariously at the edge of the crying and breakdown cliff. I wish that the kids were asleep so that I could just zone out and shut down a few more "mommy senses" to get more rest. 

I don't know how working parents do it. I really don't. I have never liked to work, but with kids its magnified to a whole new level. It makes me wonder why people spend so much money that they have to both work. I can't even imagine single parents, that's a whole new level of sadness. 

I just can't. 

Wednesday, July 1, 2015

Vaccines & Autism - It's Personal

I'm going to try to be breif here because I don't intend to start any wars or to cause polarization or offense to any readers. This blog is about being real, and talking about my experience with my autism and the things that relate to that. And no matter how many times they say vaccines have nothing to do with autism, I personally don't believe it.

But something is wrong here.

From my friend Missy Kay:
"They need to realize there are medically fragile and immune compromised children who can't handle the intense doses and sheer number of vaccines in the schedule! It's not one size fits all like they want it to be! My children developed encephalitis from the vaccines causing their immune systems to attack their brains as toddlers! It's not rare!"

This is a mom I know personally, and though her kids are precious and beautiful, they were harmed by their vaccines. This was a mom doing what she thought was the right thing, getting them their shots. Her kids will NEVER be the same. Thats a NEVER in capital letters. 

What does this have to do with autism, you may ask?
Well, it's not that vaccines "cause" autism, not exactly, in my opinion.
But here is what I DO believe. I believe that some people are more sensitive to things. For me, I am affected by medicine more than others. My husband seems to be more affected than I am. How much more are kids vulnerable to this kind of sensitivity? How much more are infants? You can't even give an infant solid food yet, but you can introduce into their body a whole list full of chemically filled vaccines. How do we not think that this might not be the safest idea?

When giving a child medicine of any kind, they determine the dose by weight usually right? There should be another consideration - sensitivity. Unfortunately, this is hard to measure. I'm not even sure if there is currently a way to determine if a child or person is more sensitive to medication than others. I know I'm more sensitive, but I'm an adult. An infant, who's never encountered medication or anything like that (outside of what mom may have received when pregnant), can't really stand up and say "I'm a bit sensitive to that". Hours of crying - I'm talking hours of painful, terrifying screaming - have happened to babies following a shot. 

Infants are new to the world and everything they encounter is new. That includes vaccines. And with no way to tell which baby is going to be sensitive and which baby isn't, we are just left forcing a one size fits all method on all babies, regardless of weights or health.

The fact is, when you flat out say everyone needs to be vaccinated, every single person no matter what, you are causing others to be in great danger. My friend's children are paying the price for the vaccine pushing you support. They will pay for their entire lives. When you watch your child, or hear the story right from a family who's child got a shot, then got sick right after, you can't help but feel brokenhearted.

If parents want to vaccinate, that's fine, I have no problem with that at all. We vaccinate. I think if more people were willing to listen, they would find out that the people speaking out for vaccine freedom are NOT anti-vaccine, for the most part. I think people would find out that they support what vaccines do, but not how they are pushed on us. Multiple doses, mixed shots, these are things we didn't have just a few years ago. The number of shots kids have, both in one visit, and over their childhood, is technically new to medicine. There hasn't been any testing or research done on what this many things shot into a child actually does. We are the test subjects. Vaccines are tested individually, but not in combination, and not in the schedule they are given. Safe by itself is not the same as safe with 5 other vaccines.

Even worse, there is usually not a lot you can do if your child is harmed. Even with the 1.8 BILLION paid out in the vaccine injury compensation program, only 2 out of 3 vaccine injured children win their cases. And that is only a much smaller portion of vaccine injured kids who actually succeed at getting that far, most don't even make it past their own doctor's offices, which responses like "one has nothing to do with the other". 

Now, imagine your kid fell off a table and hit their head on the concrete. They acted normal for a while, but suddenly became nonverbal, lethargic and sick. You go to the doctor, tell them he fell off the table and hit his head, and they tell you that one has nothing to do with the other. Would you actually believe this to be the case? Unfortunately, this is exactly what is happening to many parents of vaccine injured children. 2200 cases of vaccine injury, totaling 1.8 BILLION dollars, and that's only 1 out of 3 kids who make it to court. Only some 30% of kids who actually make it to court actually win their case. 

Think about it. When you're fighting a multi bazillion dollar medical industry, who do you think is going to be able to afford the better lawyers, and to control the information and research presented. It is so specific that there is a list of reactions, and those reactions have to have happened in a specific timeline after the shot to be considered. As if every kid and every case is identical!

Knowing how a huge majority of people with autism are actually undiagnosed makes me think that we don't even have a proper handle on what the effect of vaccines (or other medicine) actually has on the system of a person with autism. The autism "epidemic" is mostly in kids or adults in early 20's, because that's how long it has been "common knowledge". We don't know anything about how things affect them life long - into their 30's and 40's. We don't know how it affects the brain, or the body, as life goes on, especially as people enter into senior citizen status and start getting recommended more shots again.

So your kid fell off the table, the doctor wont believe you, and goes looking for the stomach flu instead of concussion (when it is clear to you it is concussion) and your child is either permanently changed for their whole life, or they die. Many parents of vaccine injured kids face this, and don't even make it to court about it. Then only 1/3 of kids who do make it actually get compensated. Blows my mind.
Shots harm.

Is this an acceptable situation, all over a vaccine? 

 Do parents have the right to decide for their children what medical care they get (until they are old enough to make the decision themselves)? Do adults have the right to decide for themselves and keep their jobs (as in the case of teachers/nurses/child care providers/etc)? Do you, personally, think that the vaccine injured kids all over this country is worth you being protected from a disease you may never actually encounter, and would likely recover from with the medical care we think is so important? You look into the eyes of people like my friend Missy, and their children, and tell them that they are just a casualty in the war against disease. 

You'd really have to be one heartless person to do that. 

It's personal. I should have the freedom to ask my doctor to delay certain vaccines, or split them up (and I do, so far, thankfully). I should have the freedom to deny them all if I want to, simply based on the fact that I know, firsthand, personally, that kids are harmed by them. So should you. 

To be honest, you don't even have the freedom to get vaccines, if you don't have the freedom to say no. Freedom means you have the choice to do or not do. If you remove one or both sides, that's not freedom.