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:

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?

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....

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:

Info Sheet for New Teacher- Autism Back to School Tips

This is the sheet I give Bubby's main teacher(s) at the beginning of the year. I update info as needed.
 
Hello. At the beginning of the year I like to put together a little bit of info to help introduce Bubby to anyone new that will be working with him.  I hope you find it helpful, and as always, if you have any questions please contact me via e-mail (preferred) @ XXXXXX@yahoo.com or phone XXX-XXX-XXXX.

 Bubby is a very affectionate caring guy. He likes to stop and chat with the adults, as well as collect hugs from all the ladies. :) He cares very much what adults think of him, so be weary of using too harsh of a tone when speaking with or correcting him.  He will take it far more personally and carry it around with him far longer than an average 10 year old little boy.  He enjoys verbal praise and feeling like he's a part of things.  His favorite things are watching funny videos, playing Minecraft, riding his scooter, swimming, playing his DS/video games, and anything to do with animals.  He LOVES animals.  When he's getting too worked up or upset about something asking him to talk about our cat or talking about your animals is a good way to calm him down and distract him.

 Bubby's sensory needs are a little different than an average person.  He gets overwhelmed in loud chaotic situations where there is a lot of noise and movement.  He will usually show this by looking and acting irritable.  He will also look like he's not following directions during these times, but his behavior is not purposeful.  He can't think straight and listen when he's in a sensory overload, and if he's it gets bad enough anxiety will set in to where it gets to where his brain goes into fight or flight mode.  This is either where he will meltdown, or shutdown.

Ways to identify a meltdown:
He will begin repeating a lot of the same things, and may not make much sense.  It will look like he's having a tantrum, but will not be able to calm down.  He will begin to cry and yell. He will begin to start looking 'floppy' where he starts flapping is arms and hands around making a noise like he's about to hyperventilate.  He'll want apologies from everyone around him, even if they didn't do anything.  (it is inappropriate to apologize if it's unwarranted) He needs to get to a quiet space to calm down away from others. He will deny this, but I always give him the choice of calming down, stop crying, or taking a break. He likes deep pressure, swinging and similar things to calm him down.  If possible when he needs a break take him to the OT room.  If he can't immediately calm himself he has to take a break.  He needs to learn that it's not appropriate to have meltdowns in front of his peers.  He should not be punished, or be made to feel ashamed of his anxiety and subsequent meltdown, either.  Last year, they said it made  Bubby’s behavior far worse to remove him from the classroom during meltdowns. You will have to get to know him and how he operates within the classroom this year  to know what to do that will work for him and everyone involved. 

Ways to identify a shutdown:
He will look blank, like he's not paying attention, and he may hum and self stimulate by pacing.  Follow the same protocol as with a meltdown.

Sometimes,  Bubby has a hard time finding his words.  Please, be patient with him and allow him to finish his sentences.  It's very much like a stutter.  The more anxious he gets the worse it gets for him to get the words out correctly. Please, don't finish sentences for him.

 Bubby likes routine and structure.  If the routine will be different it's best to let him know ASAP.  There are a lot of ways to do this. Verbally, or perhaps he can have his own written schedule on his desk.  Please, notify him and have an adult present with him before emergency drills if it becomes a problem.  Last year, he seemed to be okay without the warning, but needed it in all the years before that.   I will make up a little fact sheet with his picture on it for substitutes to look at, so they are aware of his special needs and there isn't any miscommunication. 

Thanks for being part of  Bubby's education team! If you would like more information about autism let me know and I will find some materials for you. I hope everyone has a great year!

This is the info sheet I give for the teacher to put in the Substitute folders in each room as well as for any other teacher, or para that may be working with him.  It is short and to the point. I also have a picture at the top to identify him, because obviously a sub will not know who he is by his name.

 

Hi, my name is Bubby.  I have mild autism.

Please, be aware that:

*I may get over stimulated if there is too much noise and stuff going on around me.

*I may not make eye contact or look like I am listening. If you are unsure if I am hearing you, please ask me

*I may need some extra assistance with directions and other things.

*I may ask you a lot of questions, because I like getting to know people.

*I may need a little bit of extra help changing routine or handling new situations.

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.

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

Different Perspectives: Dining Out-Part 2

In my Previous post I talked about some of the sensory difficulties and such that can be associated with going out to dinner when one is on the spectrum.  I promised a follow up with some ideas, and suggestions to some of these common problems.

First, let me take you back, just a little bit to how I came about these different ways of doing things.  My older child, Bubby is almost 10 years old.  He is on the milder end of the spectrum, some doctors say PDD-NOS and other Asperger's, and still others High functioning autism.  I tend to to go with HFA, or mild autism, as I don't care much for functioning labels on humans.  Anyway, he wasn't diagnosed until he was almost 5 and wouldn't have been then if it weren't for his brother being evaluated due to his unmistakable autism features, namely nonverbal.  So, I trudged with him in tow to every place, including restaurants treating him as if he were a typical child until autism came into my awareness when he was 4.  He wasn't a typical child and the disparity between my expectations and his behavior became increasingly clear via meltdowns.  He threw a whopper of a meltdown every place we went the first 4 yrs of his life, without fail.  I came home and cried after every time I attempted to leave the house with him during that time.  It was awful.  After discovering he was on the spectrum (and subsequently myself) I was able to arm myself with this knowledge.  I was able to accommodate what he needs to help him feel comfortable in his environment, and this made all the difference.  These little nuggets of info would have made a world of difference in my family's lives 8 years ago, so I am hoping they might help some other parents to be able to go out to eat and have a little time to relax without it being such a drag out struggle.

1. Decide where you want to eat.
I know that seems pretty simple and something you do anyway, but... let's take it back a few steps and think a little more about it.
Firstly, does it have your child's favorite food, or food they like to eat?  Many kids on the spectrum will only eat a small variety of things.  With my boys, they almost always will insist on chicken strips and fries, or pizza.  Where we go must have these things, otherwise there will likely be a meltdown, or at the least some bored kids and wasted food.  You can call someone you know who has been there and ask, or call the restaurant and ask.  Depending upon where you're going, I have been surprised to find menus on line for many restaurants.

If there is a good chance of no food on the menu that your child will eat, and you need to meet at a specific place, say for a social gathering, then you can bring food in with you.  This one is gutsy, and takes courage, but I've done it before when a group of people we were meeting at a European cafe  where there were no chicken and fries, or pizza.  I had my going out to the zoo/beach bag with us, so we stopped at McDonald's and got the boys some food and brought it with us, purchasing their drinks at the other restaurant., and taking our trash with us.  As long as you're patronizing the restaurant you're eating at as much as possible, and it's for special needs only, then I don't see why this isn't okay.

How are your child's waiting skills?  Keep in mind your child's emotional, and cognitive level when selecting a place to dine.  If they can't stay seated for than a few minutes, or has had some major issues in the past with dining out, then perhaps you may be better off doing fast food.  Fast food venues offer quick escapes and quicker overall eating time than other restaurants.  Save the nicer places for grown up times, like dates with your spouse for the time being.  We rarely took our kids anywhere else for a few years, because Bubby was just unable to handle the slower, more formal atmosphere.  Fast food places are excellent places to practice manners and good behavior. 

2. How crowded is the establishment likely to be? 
Any place around where we live that's  any good to eat at, and that's not fast food, is packed during meal times. This is not only an issue for my boys, but also for me.  I can't handle the noise and the crowds.  It really takes away from my whole experience of going out, which I do enjoy doing.  If you know ahead of time that the restaurant might be super busy, then it might be a good idea to go on an off time.  Sometimes, we will go at 5:00 or 5:30.  Other times, we will have a snack and go closer to 7:00 or 8:00. (the later time sometimes is still just as crowded,so beware of that) If it's busy and we need to go at a peak time, due to not planning ahead, or unforeseen circumstances we will split up and my husband will wait inside and me and the boys will wait in the car or walk around until our table is ready.  My husband will text me and the dreadful wait in the shoulder to shoulder crowded corridor is avoided.  Also, I sometimes see if there is a 'call ahead list'.  It's pretty much the same as reservations, but not as strict of format.  That way you can shorten your wait for a table that way.

3. Picking out your table.
I doubt that NTs really ever think about their table placement, much, but I know I sure do!  First, if at all possible, always pick a booth.  I hate sitting at tables.  Booths are much more private, quiet, and block out so much more stimuli. Tables make me anxious and nervous.  Plus, I can kind of pen in my boys in booths.

Next, locate where the most noise is coming from.  The cash register, the door , the kitchen, ect.. Find the table as far away from these areas as possible.  The least amount of traffic and noise, the better.  If you have child who is frightened of motor noises it is imperative you not sit by the kitchen where blenders, and other machinery will likely set off a meltdown. Beans is that way, and it really hurts his ears to be subjected to these noises.

4. Ordering
If you are familiar with the restaurant, or already know what your child is going to eat, then by all means, order with your drinks.  There's no need for the waitress/waiter to take the orders all at once.  If you don't need to see the menu to make a decision, then by all means, get the food on it's way. I know my boys take forever to eat, plus get bored waiting. Letting them get their food quicker is a bonus for everyone! If they are verbal, then let them order for themselves, if they want to. Being able to order food at a restaurant is a very important life skill that may require lots of practice.  It's important that they feel confident and encouraged without judgement.

5. Waiting....
Before you leave the house you should pack an entertainment bag of some sorts.  Bubby is old enough to remember his own, which now consists of his DS.  I used to allow him to pick 2 or 3 Thomas Trains to take to play with, or some other toys that were small and easy to pack up.  Beans doesn't play with toys, but likes to tap on random objects.  Cardboard being his favorite, especially the little boxes gum comes in.  I save those for restaurant and shopping only. They're tiny and novel, because he doesn't get them everyday.  People stare. I let them. They will do that more and more as he gets older and his voice continues to deepen when he makes his noises and taps at everything.  If he gets to loud I remind him he needs to use a 'quiet mouth' but I have no idea if he even understands me.

6. Manners.
This is more meant for parents than the children here.  It's up to us to model appropriate behavior for our kids and to let them know what they can and can't do.  If your ASD child is going into meltdown (and you know what that looks like) and can't get calmed down in less than 5 minutes, then please take them outside to walk around or to sit in the car to calm down.  There was not one time before my son was 5 that my husband and I didn't have to take turns eating at restaurants due to having to take Bubby out to cool down during his many meltdowns.  It's not okay to let your kid scream bloody murder in public and ruin everyone else's meal.  Also, even ASD kids need to learn that it's not okay to scream like that in public.  Meltdowns are to be dealt with with dignity, not in front of a gaping audience.

The same goes for letting your child run around a restaurant.  Not okay.  It's disruptive and someone could get hurt.  I've seen other ASD parents do this before, then proceed to hand out their Autism Awareness cards.  I find that sort of awareness humiliating.  My boys were sitting there nicely while theirs were running around, making all sorts of noise and got so far ahead of them he ran out into the parking lot.  Sometimes, ASD kids do need to move, and it's okay to walk around with them holding their hand, or even take them outside and walk a few minutes if they need to.  I have to do this at times with Beans, though thankfully not Bubby anymore.

I hope that helps make your next dining out experience a little more enjoyable. Let me know if you have any questions or would like to share some tips of your own.

A Library Adventure

Yesterday, the boys and I set out to the library.  CJ went to work with Dad,. He was short of help,so she happily filled in.  Kudos to her for stepping up to do hard manual labor out in the heat!  This meant I'd have to brave the library trip that I already promised to Bubby without help.  He even had a certain book in mind: 'Captain Underpants'.  Never mind that it was the same book that he read over and over for most of the school year.

Before going to the library, I needed to stop at the bank.  This was tricky.  I wanted to walk, but wasn't sure about going inside. If I drove, Beans would be securely in his seat as I went through the drive through. Inside could mean a meltdown or me chasing him all over the bank.  Beans is the type of kid that needs one hand on him at all times, or he runs off.  I've been known to pin him with my leg while paying at a check out, but not while writing.  Both buildings are within 2 blocks from my house. I really didn't want to drive, plus all of us could benefit from getting out and walking, so I made the decision to walk. 

As we entered the foyer of the bank Beans let out a loud groan.  He was obviously displeased with my choice of destination.  His loud verbal stims echoed all the way through the big mostly empty room as I made my way to the counter. "AAAHHHH" and "Modom" and "Uhhhhhhh" .  I noticed one teller was on the phone and I was getting anxious that Beans was disturbing her.  I was thinking already that I made a bad decision, but too late now.  We're already here.  Thankfully, there is no line and I'm able to get the transaction going smoothly.  While we wait for the deposit to finish I notice lots of lollipops on the counter and that Bubby has already gotten one.  I always weigh everything by fairness in my head. I don't know if this is the result of my aspie brain, or if it's more about just being a mom.  I want to make sure that I am always being as fair as possible with all of my kids, so when I see Bubby having a lolli, I think Beans should, too. What if it hurts his feelings that his brother got one and he didn't, but he just can't tell me?  Then he has to carry around this resentment forever locked inside about the times his brother and sister got stuff he didn't?  Yes, these are the mile a minute thoughts that plague my brain all day and night.  It's exhausting being me, as much as I over think everything.  I reach up and unwrap a  red sucker for the Beans. I have no idea if he even wants one.  Most times, he doesn't, but this time he reaches for it when I hand it to him.  He takes it to his lips, feels it, and sniffs it.  He taps it with his fingertips, like he does pretty much anything and everything, including every piece of food that he eats.  He tastes it, and looks pleased. 

We get all the finished up and now we're back on our way to the library.  Beans keeps tapping his lollipop with his fingers, causing him to get all sticky.  I start to think I have made a bad decision in giving it to him. We enter our tiny little small town library and head for the kid's section.  Beans seems quite content to sit on the kid's corner on the little loveseat. Bubby immediately notices that there's a young man on the computer playing Minecraft.  He's drawn to him like a magnet and I have to call to him to remind him to get busy looking for his book. I know we could very well be on borrowed time.  Beans may decide at any minute that he doesn't care for the library and wants to leave, causing him to meltdown and run away from me like has happened every other time we have tried to visit.  I try to help Bubby search for the 'Captain Underpants' books, but I don't want to walk too far away from Beans.  If I try to have him follow me, he will get very irritated from being asked to transition away from where he was.  I know that I must keep the transitions to a minimum where Beans is concerned, especially if there is no way for him to understand why we are moving from one place to another.  Bubby asks me to ask the librarian.  I tell him he is going to have to, because I can't leave his brother, so off he goes.  I am proud of his initiative. He knows what to do and who to ask and does so without hesitation.

They finally locate the book and we are on our way to checking out. Except my card is expired. Ugghh.  How long is this going to take?  I wonder. Beans is losing patience by the second and I know that my minutes are numbered at this point.  They get the process going and inform us it will be a few minutes. Bubby has already found his distraction.  In the other corner of the library there is a Nintendo and 2 kids are playing Super Mario on it.  He could probably stay here all day.  Beans loves to watch people play video games, so he finds a seat and is happy to just sit for a few.

When it's time to get the card I get informed that I need to go through a tutorial of how to use it, because now there is new features, including online services.  Beans has transitioned for the last time.  He is angrily tapping on the counter making "Arrrrrrrrr" noises. Meltdown in 3....2..... I rush them through the spiel and rush the boys out the door. I know I have to get Beans home quickly, or I might end up with a boy flailing around on the sidewalk beating his head into the ground.  We are still over  block away from home.  Beans is getting madder and madder with every step we take.  I pick up the pace anxiously moving across main street while trying to not get bitten.  It's hard to hold the hand of someone trying to bite your arm at the same time. I manage and we arrive home, safe and sound.

So, that was our trip to the local library. It was better than subsequent trips, and I think with practice it will get easier.

Autie Exhaustion

Today, I am suffering from autie exhaustion.  What is autie exhaustion, and how does it differ from regular exhaustion, you may ask.  I am not exactly sure there is a cut, and dry answer to that.  I think there are differences.  I am fairly certain that 'typical' people get exhausted from being overstimulated sometimes, as well, especially introverts.  I think introverts will certainly understand how this feels, even if they never quite feel the depth of it the way autistics can.

This kind of issue is usually cleverly camouflaged by quick moving moods, that tend to appear,and fade without warning in depths

Square Pegs and Civil Rights

I mentioned some school issues with Bubby in the post before last  New Places & Trying New Things.  I left everything kinda up in the air during that post, and promised a follow up.  So, here it is.

We did make it safely to the new counselor's office, despite sleet, blown tires, and broken windshield wipers.  The counselor was very nice, and appeared to have a good understanding of autism.  I was really nervous that she would either a). not know much of anything about autism, or even more so Asperger's. Or b). think that I am one of those moms that like to make a big deal out of nothing, and doubt he is autistic at all.  So, I was relieved when my fears were baseless in reality. I think she and Bubby will get along great, and I look forward to continuing to see her.

So, that is a super positive in our corner.

The behavior consultant observed Bubby for the second time yesterday, and called me as I requested to discuss what she thought. The first time, it was all rainbows, and flowers. That worried me, because even though I know 2/3 of his day is pleasant as she observed, there is the 1/3 that is not, which is the third that is causing serious issues.  This time when she observed it must have all just lined up right, because she was able to see his every button pushed, and severe meltdown ensue.  I was not the least bit pleased at the meltdown in, and of itself, but that she was able to see it unfold. It's hard to write a behavior plan, and make recommendation on a student that you've never really seen the problem "behaviors".  We discussed several things that may help on the phone.  She also disclosed to me that she will be meeting with the special ed. teacher tomorrow to discuss with her what her thoughts were.  I sent an email, and invited myself to the meeting.  I'm sure the special ed teacher is less than thrilled with that, but at this point I feel I must get pushy.  The behavior consultant also disclosed to me that she had at one point asked the special ed teacher if she would like for the county's autism specialist to come out, and do some training, and that idea was turned down. That did not make me happy, so I have called the autism specialist myself, and am asked for her to consult with the behavior consultant to decide the next steps should be. I have met the autism specialist a few times, and she is a bit abrasive, and difficult to get along with in a lot of ways, but I am desperate. This may backfire on me, but I have to take that chance. I asked around to people that have worked with her before, and the general consensus is that she does not work well with children, but is great at putting together plans, and training. So, I am feeling like bringing her into the picture is worth the risk.

So, at this point it is just a lot of research, and searching out the right people to help me help my son.  The local advocacy center didn't have anymore ideas, than the ones I am already pursuing.  I sometimes think I ought to get a job there. lol  I am scouring our state's ed. website, and printing pages that speak to the issues we are having, and what the law says about Least Restrictive Environment, Behavior Plans, Present Levels of functional Performance, ect... I am also searching through Wrightslaw site to determine what actions I need to take, and what actions have been successfully taken by parents before. I am printing out documents of such court cases.

I feel like I am doing all that I can to ensure a proper education of my son in a regular ed environment. It may not be easy, but it is necessary.  If all else fails, I will homeschool him, but that is last resort.  To me, I am not just fighting this fight for him, but for every disabled child that comes through our tiny town's education system.  They try to break them to fit them into what they want, and if they can't they send them to special classrooms in another town. Nope. Not happening here, if I can help it.  He deserves to have a place in school, just like anyone else.  He also is well liked, and accepted by his peers.  It's the adults that are the issue here.  It's time for outmoded beliefs, and ideas to get an update. 

#Autism & Self-Acceptance

I posted a pretty long post on my FB page about how I process emotions after I yet again, took something too seriously that my husband had said, and made a bigger deal out of it, than it really was.  This is something that always happens to me.  When I say always, I mean at least a few times a week.  It doesn't help that I have a hubby that I swear has ADHD, and everything is a joke to him.  My autistic brain is literal, and I often feel like he's making fun of me, when he is just interpreting the world in the way his brain is wired.  Anyway, this is what I wrote:

"Emotional regulation issues, and autism/asperger's. I find that I get irritated, and anxious by minor issues often, only to realize later while looking back that the thing that seemed so upsetting, or anxiety provoking really wasn't that big of a deal in the first place. I sometimes am embarrassed about my overreaction to seemingly insignificant occurrences, and the anxiety about how others might view me in light of my meltdown, or the anxiety about it happening again will keep me from trying new things, and socializing, if I let it.

As I have gotten acquainted with ASD, and what it's all about I have become aware of the reasons behind this phenomenon. One big one is weak central coherence (inability to see the bigger picture) and the other two are executive functioning issues, combined with difficulty in detecting, and describing emotional states. It's hard for me to see the bigger picture when I see something that goes wrong in my mind. I lose sight of how to get it back on track, and struggle with understanding how to deal with mounting emotions.

The last, but least of these triggers is, the deep down fear that I am being judged harshly by others, and won't/don't measure up. I think this reason is one that most, on or off the spectrum can relate to, but for those of us that seem to get things wrong so often, self-doubt is often a big obstacle to overcome when trying to regulate our emotions. I can lash out defensively, as if I deep wound has been ripped open, because in some ways, for me it may feel like it has. Learning mindfulness, and lot, and lots of opportunities to learn self-acceptance has helped a lot."

 

Then someone asked a million dollar question: How do/did you learn self-acceptance?  Can you give some examples of that?

Building Positive Interactions in the Classroom- Bubby goes to middle school

Tomorrow will be the one week marker of the start of school. This year was a big deal, because Bubby moved to middle school. I really had anticipated the worst. I thought for sure the teachers would be less than inclined to indulge him with all of this idiosyncrasies. I had anxiety filled thoughts of him being bullied, and crying. I tried not to think too much of it, but truth be told I was about a third ready to homeschool him. I really thought it might be that much of an ordeal.

To my utter shock it has been the total opposite.

I wanted to share an exchange that he had (told to me by his para) with his science teacher. It was the first, or second day of school, and they were coloring something. The teacher asked the class something related to the material they were studying.

Bubby's hand shot up, and she called on him.

Bubby: Does anyone tease your dog? (This is one of his special interests.)

Science Teacher: Well, we're talking about _________ right now, but I'd be happy to talk about my dog after class.

Immediately, Bubby starts to cry, and get worked up. Meltdown is pending. The para decided to let him be for a second, which I would agree with at that time. He needs some space to work through his upset at feeling criticized, and probably embarrassed.

Different Perspectives: Hugs

Sometimes while I am poking around on the internet I read things written by parents and spouses of autistics.  I am convinced that there is a major communication meltdown between NTs (neurotypicals-meaning someone without a neurological difference such as autism) and those with ASD.  I do think that there are times where people are just being selfish and uncaring on both sides, but I do feel that most of the time it's more about people getting their feelings hurt and reacting from a place of pain.  We don't always make our best judgements or behave at our best when coming from that place.

So, I thought I'd try to offer up a few of the most commonly read ones and an explanation for what might be going on for both sides in an effort to bridge the gap a bit,  Obviously, I am only one person with one point of view, so I may be off the mark a little bit, or a lot for how these situations may have been or will be experienced in your life.

I think that I will make this a series with one example being cited a a time.  Kind of like those relationship articles where they have He said She said and then the counselor's turn to moderate and discuss the issue.


"My son/daughter/husband/wife doesn't respond to my affection." or "He/She runs away from my hugs and kisses"
Translation:
I show my love with physical affection and when you reject that, it feels like you are rejecting ME.  I feel hurt and alone without frequent physical touch as a part of my daily routine . (especially for spouses)  As a parent, I feel helpless when you cry and I can't comfort you.  I may even feel like a bad parent.  I sometimes feel ignored and unloved by your lack of reciprocation of physical affection. I feel abandoned and uncared for.

What the person on the spectrum might be thinking:
Hugs can feel suffocating and scary. I  may not be able to read nonverbal cues well enough to know when, or how long a hug might occur, thus making physical contact seem unpredictable.  Light touch is often aggravating.  Deep pressure may work better than light brushes. (they make my skin crawl just thinking about it) One of my sons enjoy being squished up in a blanket.  This might be a good alternative to hugs.  Trust is important and trying to force physical contact in one way to be sure I will not trust you.  Let me cue you when I am ready and be gentle.  Provoking anxiety will only make me  feel more distrustful and leery.  I can show my affection in other ways, like doing things for you to show I think of you and care.  Please, look for alternative ways I might be showing my love, like remembering to do a chore for you that you dislike, or making something for you.  Some children that are on the severe end of the spectrum like to carry around objects from the people they love most.  This can be shoes, clothes, jewelry, or other personal items that have your scent on them and remind them of you.  This is their way of being close to you.  For my spouse, I like to show affection, but only but only when he listens to my sensory issues and doesn't do the things I dislike.  Clean shaven, no light brushes on my skin, no stinky breath, ect.. Respecting my space and my being results in more hugs and kisses for him.

Trying to Get Away from Myself

Here the last week or two I have been a bit melancholy. It's a depression that has me in limbo of almost okay, but then not quite. The blah feeling that waxes and wanes as the day progresses. I highly suspect that it's been induced by the withdraw of  meds I was taking for migraine prevention. As my body struggled to readjust once again I am found myself slowly sinking into a place of apathy, and sadness.

My brain reacts as I feel it should. I start questioning everything. I begin to feel as if something is perhaps missing, and I need to find it. It's a logic puzzle to my brain. "Something is not quite right. Something is wrong!", it says. My brain sounds the alarms.

The ways in which I react are often not useful.

I often begin to search for ways to solve the problem. If there's smoke, there has to be a fire. Right? So, I begin my futile, but busy quest to find out what is the root of this sweeping mood shift. I make mental checklists of items that could be contributing to my feelings of despair, and frustration.

Could it be that I'm not getting enough sleep?
Maybe I'm not eating well enough.
Am I in need of more alone time?
Do I need to get out more?
Stay in more?
Exercise more?
Exercise less?
Do I need to set new goals, so that I am not so restless?
New friends?
Old friends?
Less sugar?
Less caffeine?
Is the answer more time with nature?
More yoga?
Too much technology?

The list is exhausting, and long. I could go on forever, but there's no point, because the answer isn't in my habits. It's in my brain.

As I said earlier, I suspect the reason behind this unstable mood of mine is the medication change. Meaning there is no way out, but through it. But, my brain doesn't want to hear that. It's natural for us to jump to changing things when we're uncomfortable. It's how the physical world works, and how the human race has flourished. We problem solve. When something feels wrong, or off we spring into action to shift this feeling to one that feels better.

Except emotions, and states of  being do not work like that.

Back to school with Autism tips:

It's that time of year again.  We've fought the madness of the school supply isle of the local store, bags are packed, new school clothes are washed...Ready for a new school year to begin. 

If you have kids with special needs there may be a few more things to do.  I have a few tips for parents that may be new to the special ed system and are looking to make their child's transition back to school as smooth as possible.

1. Make an info sheet about your child for the school staff.

I used to e-mail this list to my son's teacher, but after getting the feeling that they sped read it once then deleted it, I decided that this year I'd print one out and give one to everyone who will be working with my son.  This sheet should include the following info:
* Your phone number and e-mail
* What your child likes to do, hobbies, ect.. (this helps to identify them as individuals, not just another student)
*What your child's strengths and skills are
*What special needs your child might have and how to identify their needs ie; I list the signs of my son when he's about to go into meltdown, or is already in one.
*List the proper protocol for dealing with problem behaviors and other issues that may come up. For my son, I list all the things that will calm him when he gets upset and how I expect them to remain respectful of him, because he can't help some of these things.

2. Make a very short info sheet for substitutes:
I always get the feeling that subs are not informed of IEPs and special needs that need to be attended to in the general ed classroom. So this year I have decided to make a very brief sheet with my son's picture at the top of it stating his name and that he has autism, and a few things to be aware of .  Brief and to the point.  The list of things to be aware of should only be 5 or 6 bullet points.  Just something to give the sub a heads up that your child has special needs.

3. Put together an info packet for the new teacher:
Sometimes, I will put together a folder of info for a new teacher about autism.  There are some teachers that want to know more about autism and I will give them a folder full of useful info.  There are some that you can tell don't care and don't want to know.  How much info to share is really dependent on the teacher's attitude.  If the teacher is not very willing to learn very much of anything about your child's disability, then you are best suited to fill the folder with as little information that is pertinent, and to the point as possible. This increases the chances that they'll at least look at it.

Do you have any tips to share?

Overcoming Negative Thinking Patterns With #Aspergers

Here in the last few years especially I have been trying to get rid of old, outdated thinking patterns and usher in some new ones.  I've not got it figured out, by far, but one thing I am absolutely certain of, changing our most automatic behaviors is hard.  It is really difficult to do.  If it weren't, let's be honest we'd all do what we know in our most rational moments to be the best all the time.  We'd never have an emotional reaction that snuck up on us and took our logic away, causing us to say and do things we regret later.

I have not been anywhere near entirely successful in dealing with some of my most ingrained automatic negative thoughts and behaviors.  I'm sure that my husband would testify to that.  I, however, have been able to start the process.  I have made some tweaks, and had a few successes, even if they were minute, or short lived.

I have a lot of issues with negative beliefs about myself, and subsequently my behavior is negative.  Some of these things were borne out of a childhood where I was not supported, loved or cherished consistently.  Some of them are probably just my personal way of dealing with things, while quite a lot of it I suspect is from my neurology.  There seems to be quite a lot of people with AS that struggle with self-soothing.  I tend to be the most rational, grown up, logical level headed person you ever meet 98% of the time.  I am so predictable and methodical I make everyone crazy with it.  However, there's that 1% of the time where I've had too much routine change, or sensory input, or some other issue with executive functioning and I go into sobbing meltdown.  This is not logical.  It is the opposite.  It's emotional overload.

Then, you have the other 1% of the time where I have jumped off of the deep end into the negative assumption pool.  This is where my terrible self esteem causes real problems other than making me feel bad.  This is when I cannot help but assume that others are out to get me, because they think just as badly of me, as I do myself.  This 1% of the time I feel everything in my environment is a reflection of me.  It's a sort of sad, negative, bleak self centered way of being.  Like it or not, it's probably mild depression.  Depression has a way of turning everything into something personal.  Everything around us when we are feeling depressed is somehow about us, or going to negatively affect us.  Fights with spouses, and friends are easy to come by when you have depression glasses on.  After all, everything they do is a result of how they feel about you, when you feel this way. They might be late, because they don't see you as important, or that friend didn't wave at you, because they don't like you anymore, or your boss didn't tell you you did a good job with whatever task, because they think you're a failure.  The possibilities to link yourself to your environment are endless when in this frame of mind.

For me, I can get to where I need a release. I need to get it out, and be reassured that I am okay and things will be okay. I turn into a child that needs consoling.  My husband made a good point last night when I mentioned this to him.  He said it was because a child only sees the immediate problem, whether that is not getting their way, or getting punished, or feeling lonely. In their mind they have no capacity to see that the situation is temporary, or to have the power or ability to problem solve. They can't see a future, they only see now and if the present is awful they feel it always will be.  I think due to my AS and my parents not giving my the reassurance and care I needed I never really developed a very good coping strategy to dealing with the situations where I feel knocked down and emotionally overwhelmed. I lash out and look for ways on the outside to alleviate it.  I look for short term solutions. I problem solve with my feelings the way an 8 year old would. Thankfully, I don't get knocked into this space easily.  I do however, need to find better ways of dealing with my emotions and my extreme self loathing when I do get into this space.  After, researching and doing quite a bit of thinking I have come up with a little cognitive behavior exercise that I am hoping will help.  I've tried it a couple of times and it seems to be helping so far.  I will share it, in case it may be of help to anyone else.

So, here goes... the CBT-type exercise I came up with for myself.  Of course, I am not a doctor, and have not professional training in CBT.  I am just offering up my experience.

Thought: This is where you list the thoughts/feelings that is causing you discomfort.  Example: I can't go to the party, because I am fat, or I can't do the project. I know I will fail and people will laugh. This should be only a few short sentences, if that.

Consequences Of Thought/feelings: This is where you would list how this thought makes you feel and what consequences of it will be. For example: we may avoid people and miss opportunities due to irrational beliefs, or the thought may cause so much stress that we will feel depressed and waste a day moping.

Past Occurrences That Are Similar: Here you would want to think of a time in your past (childhood if applicable) where this thought or feeling occurred. Then, list a recent time where this thought, or feeling occurred.  This helps you to see why the behavior might be there.  It probably served a purpose way back when, but if you look at a recent occurrence of the same behaviors you might see how it's no longer working.  This is important for me, because it helps me to see the logic behind my emotions, as well as pulls me back in. I can look at the recent occurrence and see how I handled it then, and realize I'll get the same result if I keep on with the same thoughts and behaviors.

What evidence do I have that my thoughts or feelings are true?  That one is pretty self explanatory.

Is it Helpful to carry this pattern of thinking into the present? Here again, pretty straighforward question that you can probably figure out from the last 2 questions quite easily.

Why or Why not?  If no, then come up with an alternative belief, or action to do instead of the old pattern of behavior.

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.

Conversations With Bubby- All About Food

As I have mentioned on FB Page, Bubby and CJ are out of town visiting with their grandpa.  I haven't talked to him much while he's been gone. I text everyday and all seems to be going well, so I have left well alone. One thing I was telling Hubby about earlier today was that I don't miss all the food questions all day. Mostly in the form of when do I get to eat bacon?
The questions usually look something like this:

"Can I have bacon for breakfast?"
"Can I have just bacon for breakfast?"( The answer is always no.)
"Can I have the leftover bacon for a snack/supper?" (here too)
"Who is going to eat the leftover bacon?" 
"Why can't we have bacon everyday?"

Literally, this is the questions I hear everyday.   So, it was no surprise that tonight his main questions were about meal planning. Though, I did find it a bit surprising that he didn't talk about bacon once. It went like this:

Him: What do you think we should do when I get home?
Me: I don't know. What do you think we should do?
Him: I think we should go out for pizza to celebrate me being home.
Me: Well, we will have to ask dad and grandpa about that. Maybe.
Him: What did you have for supper?
Me: Me and dad had sub sandwiches and salads and Beans had pizza and cucumber with olives.
Him: I'm glad I wasn't there for sub sandwiches. We had Sonic for lunch. (He then tells me in detail what everybody ate) For breakfast we had these twisted doughnuts. It was good. (Doughnuts aren't allowed for breakfast here unless it's a special occasion.)

This kid is all of 59 pounds at the age of 10 1/2.  You'd think he was huge with his obsession with food, but he is just the opposite. I think food is sort of an anxiety for him. He is always worried that there is going to be something served that he won't like and somehow that will be just a catastrophe for him, even though I never make him eat food he hates, or go without.  He asks me everyday as soon as he sees me after school what we're having for dinner. During the summer, he asks as soon as lunch is done.  He studies the school lunch menu like it's of the utmost importance. At the end of the school year last year they had chicken nuggets on an unspecified day. I had sent him with a lunch not knowing about the nuggets. He had such a meltdown that they let him eat a school lunch.

He is just so funny sometimes with his little quirks. They are what makes him him. :-)

The Damage @TheDrPhilShow Has Done

I don't watch daytime TV, nor do I get involved in large social issues that typically involve choosing opposing sides, so I learned of the interview on Dr. Phil's show in the 11th hour yesterday.

I am still sitting here this morning in a shock, even though I did not watch it. I caught a few glimpses. I read things from others who saw it, and I followed the event a little on Twitter.

This shock is one that I find myself in when I can't understand a social way of doing things. It's one that I can't shake, because I can't make sense of it. Not only did that interview upset me,  (I am not even going to use her name here. She doesn't deserve to have her name in print giving it anymore attention.) but I saw a string of other articles yesterday (that I am also not gonna go search out, and share here) about abusive caretakers, and residential homes harming, abusing, and killing autistic residents.

My brain loops in confusion, and profound sadness.

I cannot make sense of why this is allowed to happen. Why is someone who tried to kill their child getting so much publicity? Why are they granted interviews with influential TV hosts before they are even sentenced? While she sits in jail accused of a heinous crime the spotlight shines on her struggles. This is not justice. This is not right. My mind trips on the fact that socially this is influencing people.

Then the fear sets in.