In the Aftermath of My Meltdown

So, I had a meltdown.

Sigh.....

You may have seen my post that I wrote at the tail end of it last night, but have since taken down. It was too personal, and raw to leave up and available to any eyes that came across it. And, there were eyes....Something like a hit a minute was happening. As I watched the stats climb on the post with each refresh I felt more and more exposed until I decided to take it down.

Responding to Challenging Situations with Your Autistic Child

I haven't written much about either one of my boys recently on the blog, at least not in any specific kind of way. Part of that is is because I haven't had much to write about. The other is that I am never sure what is too much when speaking about them in their youth in this public forum. The main part is that my writing style has shifted a bit to a more general subject matter that specifically includes my personal thoughts about life, and is less about autism in, and of itself.

This entry is one in which I hope does not breech my son's privacy boundaries to a great extent, but still is able to get a point across that I am wanting to.

Bubby is now 14 years old. He's grown into a fine young man with a deepening voice, and a fuzzy little mustache above his top lip. This summer he will be getting his learner's permit to begin to drive. To be honest, I have no idea how that will go. I suspect it will go fine. He's doing very well in school with his current IEP.

It was not always this way. There was so much that we had to go through with the school to get to where we are, and attitudes we had to change.

What if I told you all that 80% of the issues that I see parents (and school staff) face with their autistic kids can be resolved by viewing it in a different perspective? Would you be interested in learning a different way to interact with your child so that meltdowns, and arguments don't ensue so frequently?

The biggest mistakes I see most parents make with their autistic children are

Defining Friendship

I don't know a lot of about social etiquette. I don't have a buzzing social life, and I don't do girl's night out. I forget to do simple things like say hello, or goodbye to people. I am moderately faceblind, so I will walk right past people I've known for years in a public place leaving to look like a space case at best, and a snob at worst.

I don't know a lot about having a lot of friends, but I know a lot about being a good friend, and what constitutes a quality friendship.

It has taken me many years to define what a good friend is, and I am still learning. One big trap that I get caught in is that I am very eager to open up my resources to almost anyone in need. I will spend hours talking to a friend in crisis, or spending the little money that I have on making a cheer up package for them. It's always been part of my personality to share what I have. In grade school this was rarely a good thing. Kids would ask to cut in line, for my food, for my money, or my seat and I'd almost always give it to them. I'd not hesitate. If they were asking they must need it more than me, and I'd always assume that they'd return the favor when I was in need. Obviously, that was not what happened, but I really didn't learn from it. Instead, the lesson I'd take to heart was that there must be something wrong with me as to why others didn't treat me with the same respect as I did them. Every time something happened where I was taken advantage of, or left out in some way it would chip away at my self-esteem a little bit more. I'd give more of myself away than before in hopes that it would somehow raise how worthy I was for friendship. I was setting myself up for failure. I was also letting other's behavior define my worth.

I still find myself doing this as an adult. It's been a hard habit to break. I don't necessarily think most people take advantage of me now in a purposeful way. Not in the way that they used to. I think it's far too often that people are more willing to take support than to give it.  When a crisis, or loss hits it is really uncomfortable for another person to be able to sit with you, and support you. Big emotions are hard to deal with, and it takes someone who has a well defined, strong character to tolerate maintaining a friendship during uncomfortable moments. What I mean by maintaining is actually playing an active role in the friendship. What I don't mean is staying

Meltdown Recovery

I have made posts, and talked about meltdowns on my blog before. It's not a new topic for me, by any means, however it's not something that happens to me often. When it does happen it's such a heightened state of emotion that the details of how I feel, what triggered it, and how to recover fades with every hour after I am in a relatively calm state. As usual, I cannot speak for everyone on the spectrum, but I can tell you how I feel, and hope that in doing this that some of what I say may help someone else, especially parents of autistic kids who don't have the ability to explain things. I'm 36, and barely am able to have the insight to be able to advocate for what I need to recover from meltdowns.

This afternoon I had a meltdown. It was an epic one that had been building for quite some time. When it hit I was unable to identify it, and stop the torrent of emotions from flowing out. What triggered it was not one thing, and with me it almost never is. I had been operating above the level of my capacity for a couple weeks now. School enrollment, and appointments have devoured my days. So much paperwork, and talking to people. Social engagements, and all the while keeping up with regular household stuff, too had me teetering. I knew I was teetering, but there was not much I could do. I used every coping skills available to me, but it was not enough. On top of the demands a few different people in this small time frame had treated Bubby poorly. This happens often with him, but usually not in such a small window of time, and one in which I was recovering from so much. (He is not aware of the rejection, or what was said about him in two of these incidents.) Not only was I beyond sad for my big hearted son who does not deserve this, but I was/am feeling as if I failed him in some way. This was the last straw. This took my last spoon, and it was all downhill from there. I had a meltdown, passed out from exhaustion, and have been recovering for the rest of the night.

I once heard from someone on an ASD message board that said the difference between a meltdown, and a panic attack was that a panic attack = "OMG! I'm going to die!!!!" A meltdown = "Omg. I'm going to make you die!" While not all of us are physical I find it an apt description. I felt anxious when I made a status update on Facebook, and that quickly evolved to irrational anger when it was met with well meaning, but not helpful comments.Now, I am sure there are people that think that if I'm going to leave bitchy comments (or say them) then it's fair game for them to respond in the same manner. I suppose that is true. Other people can hold that opinion, but I don't feel the power is equal in that equation. I see it all the time with adults vs autistic kids. They just can't leave the kid alone to recover. Instead they keep picking, and arguing with the kid, further escalating things. When I am in a meltdown situation it's the worst, rawest, most desperate feeling in the world. I am out of control, and my world is spinning. Sometimes I might cry, but that isn't real often. As a matter of fact, not much emotion ever registers on my face, so there is little for the other people in my presence to clue into other than my behavior.

So, what do (usually) well intentioned people usually say when I am having a meltdown situation?

Beyond Behavioral- The necessity of medical tests for ANY behavioral changes in a nonverbal person

I may have briefly mentioned some of Beans violent meltdowns lately. I tend not to share a lot of the personal day to day happenings that I think may reflect negatively on my kids. Not because I think one should never talk about autism in a negative light, but because I feel there needs to be a limit to how much of my children's stories I share with the public.

Anyway, back to my point... He has been having pretty severe meltdowns several times a day that have been leaving the whole house exhausted. Obviously, the meds he was taking were no longer helping, so I took him off of them. His mood improved overall, but the meltdowns did not cease, even a little.

When I took him to the doctor about it the first question was if I wanted to try more meds.

That is never the right first question when dealing with a nonverbal autistic child. Really, any autistic child, but especially not one who is extremely limited in communication.

I asked if his lab work we had done several days ago was back. It was, but not even really considered. I had to ask for the lab to be done, and for it to be read.

Turned out his blood sugar levels were a little low, and his thyroid was high.

Q&A- Meltdowns, Tantrums, and Shutdowns from an autistic perspective

I have received two very important questions regarding meltdowns. The first one was from a few weeks ago when I said I'd do some video type of blogging on my FB page, and the other was via email. I do think that I may be able to cover more material in a quicker way if I were to do a video, but I am not up to it at the moment for a variety of stress, and health related reasons. Sometimes, it is nice to use chatting as a way to convey a large quantity of info more efficiently, but sometimes I just can't get the words out verbally, so typing is what I have to do.

The first question I have received is:

"How do you tell the difference between a meltdown and a tantrum?"

I have thought long and hard about this one. The short, and quick answer is there isn't one.

Let me explain.

My philosophy is with kids in general is that they typically do the best with the skills they have. Every behavior is a way of communicating something. Today's world seems so hellbent on forcing children into complying. It seems that the better behaved one's kids are the more effective you are regarded by others as a parent. I find that this is erroneous, and based on a belief system that all kids are here to fit our molds, and not have days where they are human with their own needs. Plus, it's often that we are only judged on what people might see in public for a short time, which says virtually nothing about the way we conduct most of our lives behind the scenes.

What I find most often with autistic kids is that a tantrum almost always turns into a meltdown due to the overwhelming emotions that come with a meltdown. With both of my boys it seems that not getting something they wanted might spark a tantrum, but quickly moves into a meltdown where even if I were to give in to what they wanted initially it would not matter. They suddenly cannot be calmed by anything. I do see that in a desperate attempt to not even go there in the first place many parents of ASD kids will just not ever say no to begin with out of fear of the impending meltdown. That is also not a desirable way to deal with the situation. Kids need to be taught how to handle strong emotions when they arise, and they can't practice if they never get the chance.

Equally, as important... don't say no, then stick to it with veracity to prove your point if your kid cannot handle that situation. Sometimes, we don't know if they can handle it, or they want something that is impossible to give. If they're already seeming vulnerable I try not to even get into situations that might cause a tantrum/meltdown. Like, I know that Beans cannot handle walking past the pool while it is open, and not going. That is beyond his ability to comprehend, so I make sure to avoid the pool area while on foot. Once I say no to something I mean no, and will not go back, but I try to be sure I mean NO before I say it. If I can avoid certain situations that I don't think the boys have the emotional skills to handle I will, instead opting to work on building up to those challenging situations.

The very, very worst thing that one can do is not ever try little situations that might give a child the ability to be successful in handling the situation, thus they never learn how to manage their emotions. An example I see a lot is parents that say they never go out to eat, or virtually leave the house with their autistic child. This is not doing anyone any favors in the long run. This all or nothing thinking leaves the autistic child with no exposure to the outside world, and no opportunity to learn in small steps how to behave, and handle oneself in public.I know that it can be difficult, awkward, embarassing, and even unsafe if you have a runner, but if done in small enough steps it can be done. I take all of my kids with me to the grocery store, and to restaurants alone, and it is usually fine. We didn't get there overnight. This took years of work to get the point my boys can behave in places like restaurants,and other public places. I wrote a short tutorial about this HERE. 

Question two: What are shutdowns?

This question was a hard one to answer. I don't really know how to describe them, but I will try.


What do they look like:

Helpful Guide to Understanding Meltdowns

One of the most common questions that I am asked is about meltdowns. It is understandably one of the biggest issues a person on the spectrum can face, and it can really make loved ones feel helpless. I always feel a little bit hesitant on giving much general advice. I find that there are about as many different types of meltdowns, as well as ways to help as there are autistic people. What works for one may not work for another, and vice versa. So, I thought that I could offer some general tips and ideas based off of what I have seen in my life. Some of these won't apply to you, or the autistic people you might know, but hopefully a few will be able to at least provide a little insight.

So, what is a meltdown?

This questions jumps right to the center of what this entry is about. It's also one that is really hard to answer. I don't know how to describe something that has no physical form. It's almost like trying describe what an emotion is. I just can't quite find the right words to convey the depth of a meltdown, and it's many, many facets.

I think a common misconception is that there is only one kind of meltdown. This is what makes it seem so elusive to onlookers who want desperately to problem solve when their autistic child/loved one is in the throes of what they think is a meltdown. What worked last time might not work this time, and a trigger that seemed to be mild last Thursday might be too much today. There's different types of meltdowns, as well as different combinations of things that tend to set one off at different times, and believe it or not is even unpredictable to many of us adults who are very self aware.

I can list a few different general types, and triggers so that you might be able to gather some info from here to possibly compare to your own situation. One thing that I heard once from a behavior specialist is that a meltdown is like a seizure in that you cannot stop one once it's started. You can make one worse, and you can prolong it's effects, but once the brain has reached that tipping point it is over. You can't unspill the overload, which is is to me what a meltdown is. It is an acute reaction to too much happening all at once, in which the brain has no way to cope, or contain. The excess must go somewhere. From what I can gather there are three main categories of meltdowns. Sensory, Executive functioning mishaps, and Emotional.

The different types of meltdowns:

Change-How my brain processes it

 Edit: I just want to add that this is just a description of a temporary situation. I'm not in any distress right now and while I appreciate everyone's concern, I'm not in any need of support at the moment.

I feel my ears get hot and my jaw clench. My heart is racing and my eyes are are getting blurry. This is either anger, or anxiety. I am unsure which. All I know is, something unexpected happened. My regular routine was changed and I was not warned. I don't know how to take this. It feels personal. It feels like a big promise broken.  My pride feels hurt. I feel disrespected. I know that it's not that big of a deal, but it feels like it is. You tell me it's not, and that makes it worse. That makes it insult to injury. Now, I am most certainly shifting to mad. Anxiety doesn't feel this defensive, but it does feel threatening. I felt threatened, and now I feel like I have to defend my right to feel the way I do and be the person I am. I wasn't the one that made a last minute change. I am not the one who isn't making sense. You are. You changed it all without warning. You changed it all without explanation and now I don't know why. I need to know why. Is it me?  Is it something I did? Why do I feel like crying now? I must know why I am about to cry. I feel let down. I feel like I need a moment to regather my thoughts. They are racing. I think I asked you why you did this and why you changed your plans, because you say I did, but your answers don't make sense to me, so I will keep asking, until I tell you to leave me for a minute, if I remember to tell you this. Sometimes, when I am this upset, I forget. I forget to tell you that I need a minute. I ask you the same things and you get upset, which makes me more upset. Now, I know it's personal. Now, I know I need a break.  Now, you are mad, too. Now, you are telling me that I am illogical. I hate it when you say that. I don't think I like you right now.  Your words are overwhelming me with their force. I want to talk back, but I can't. Maybe, I could, but I know I shouldn't. When I feel this way my words are everywhere in anger. I just want to know why you acted different. Why did you do something out of the ordinary when we always do it in this order? Why can't you answer me with more reason? When I do things out of order I always have a reason. It's never because I felt like it. I feel like I've been lied to. I am angry. I need you to fix this, but you can't, because I am already upset. I need to be alone. I need to be in quiet. I need to know things are okay. I need to know that I am okay. I need to remember that life exists outside of this very overwhelming moment, even if it feels like forever is contained in this now.

Pre-meltdown

Some may be wondering about where the video I posted earlier went. I felt self conscious about it and took it down. It happened again.  It's still happening right now, as a matter of fact....

By it I mean frustrations leading to meltdown status.  I'm not yet in a meltdown, but I could so easily slip right into one, as it's close enough to taste right now.  It's that sensation of nothing be right.  How wrong it all feels. My head is hurting, my stomach is in knots, and nothing feels right.  My skin recoils from every texture, my ears feel no respite from every noise that seems to be all on max volume.  I want to run away, but have someone hug me. I want t be left alone, but talk to someone.  These are my contradictions of meltdown.  Rational thought is still present, but contained in a bubble by itself, while emotional fretting is surrounding it.  I know this is nonsensical, but it's like I can't stop it.

I don't even know when and where it began. I know I read a few things this morning that didn't sit well with me, so I tried to explain my side. I was unable to do it satisfactory, at least in a way to persuade others that my view had merit.  It snowballed from here.  It has been one of those days where everything on-line that I tried to participate in went this way.  I think a normal person would have decided it was time to pack it up for the day several hours ago and busy themselves somewhere else.  Not me. I'm not normal.  I perseverate, and I do so with vigor.  These last few days I've seen a lot of ugliness in the autism community (both from NTs and autistics). I've seen a lot of irrational behavior and assumptions that make no sense and do not fit fact.  This is not merely my view on life, but real facts.  One person's fact can easily be seen as opinion from another perspective... which I know rationally.  But, my brain can't wrap itself around such a broad concept.  My brain says, it's either one or the other.  It's black or it's white. I can't. move. on.  I'm stuck in this pool of frustration.  This frustration leads itself to criticism.  I begin to fear that maybe it's me that's wrong. My thoughts circle around this idea like this:
Maybe that person doesn't like me anymore.
I'll bet they think I'm stupid.
I probably shouldn't post/say this.
I'll bet they think I'm crazy.
I am not successful.
I don't do anything right.
People in general don't like me.
I'm not a likable person.
Maybe I ought to find something else to do with my time.
No one will miss my blog/page anyway.
They all would rather me be quiet anyway.
I have nothing to offer of value.
Maybe, I'm not autistic.
Maybe there's something really wrong with me.
Why can't I stop from feeling so bad?
Maybe, I should delete this.
Maybe, I should delete my whole blog.
Why do I waste so much time?
I'll bet my husband is going to come home and just know I wasted my whole day on perseverating over something that is really minor.
He'll be disappointed.
I'll bet everyone is in me.
Why do I let everything bother me so much?
Why do I let my thoughts get so negative?
I wish I had someone to talk to that would understand.
I wish that I could talk to someone without feeling judged.
I wish I didn't feel like such a freak.
Maybe, tomorrow will be better.
Tomorrow has to be better.
This is embarrassing.

That is the making of pre-meltdown.  Actual meltdown would have had lots more cussing, and my anger eventually spewing the other way to others, where I would have deleted my page, blog, or at least some people.  I did go 'unlike' some pages, but I didn't do anything big.  Remembering my mantra:
"Don't do anything permanently stupid, because you're temporarily upset. "  I figure if I can hold off on any actions for a few hours, then if I still feel the same, the action can be carried out then.
So far, I'm a little calmer....