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!

Autistic Regression and Fluid Adaptation - Musings of an Aspie

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. 

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.

I'M NOT SAYING KIDS ARE DOGS. Again, DON'T OVERREACT. 

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? 

Anxiety

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. 

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.
YOUR CHILD MAY DIE. YOUR CHILD MAY NEVER BE THE SAME.

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.