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.

Learning To Float In A Sea Of Chaos

The other day I shared this photo on my page:

I found it on FB and thought, oh... this is me. This is a perfect example of where I am in my life. Not that I am this martyr that just gives to all and gets nothing. I don't really view my life that way. I don't feel that I take on more than my fair share.  I do think that I sometimes have more on my plate than I can swallow at once and that is an issue, because it's as if I keep putting more and more back into the fridge for the next day, but the leftovers never get quite gone. Sometimes, I clean out my fridge and am happy for that feeling of things being pretty taken care of for a bit. But, then there's the other times. The times like now, where every morning I open my fridge and I see leftovers from 3 weeks ago that I needed to take care of, but I didn't. They're still there, rearranged and prioritized.  I am feeling overwhelmed. I need to answer emails, and blog replies. I have important phone calls to make and errands to run.  I have conferences to attend and volunteer work that I don't know why I sign up for, but I do. (Okay, I do know why, because I sometimes want to give back and do something more than just dishes and laundry.) I have an IEP coming that I need to prep for and more than one child with issues that needs my attention at school. I can only do so much in one day.  I only have so much time and energy.  This week my fridge is overflowing with leftovers.

Just while writing this I had to get up and chase our new dog (who I am also training) down the alley, because he found a week spot in our fence (that I totally told my husband about, but he insisted it was fine) and had to stop writing to answer texts from Bean's teacher. My husband and I are in a stalemate, because he doesn't agree with the way I want to train the dog. So, there's a lot of tension there. I am bossy. I am controlling. I am working on not being so much so, but it is in my nature to know what needs to be done and do it.  Part of that is working on letting someone else take care of the leftovers,sometimes. Even if they don't do it my way. Even if things don't all get done. I know this is life. I know I will be here again and again. I will get much of these tasks done and then after a short resting time, things will get hectic again. Life has a way of being this way, especially when you have special needs kids to tend to. I sometimes run out of steam, but I always get it done.  I know that I do. It's hard to remember when I am in the middle of it all drowning that I will sink faster if I flail around fighting.  I have to remember to stay calm and float naturally. Not easy when it all seems so urgent. I have to remember to stop perseverating on what I'm not getting done and think about what I did. The first will bring me to a standstill, while the other will help me see what I accomplish. It's hard to have a good perspective sometimes, but worth it, emotionally.

All in all I think I am doing good with being calm and looking to the bright side. A vast improvement from where I was even a year ago.  I am still drowning in it, but I am able to be calm, delegate, and prioritize. as well as not feel like a failure when I can't meet every deadline or commitment.

Managing Negative Behaviors With #Autism & #ADHD

I am a member of a lot of autism pages on FB, and I read a lot of autism related blogs, ect.  There is a recurrent theme that I see played out everyday. It's hard for me to address it as a general concept because I don't do general concepts very well. I am a detailed thinker.  I am going to try, because this subject is very important to me.

I'd like to discuss the way I see parents handling their child's 'behaviors'. I really dislike that word,  behaviors. Let's call it responses. That's what they are. Everything a child (and let's face it, people in general) does is a direct response to a trigger. The trigger can be negative, or positive.  It can be physical, something that can be felt with the senses, or private, something that is only evident to the person feeling it, but nonetheless just as valid.  Since a person who is on the spectrum senses the world differently parents have to parent differently. I think this is a hard thing for parents to know how to do that. It's even harder for other caregivers, such as teachers, who may not have any experience with your child before suddenly noticing what appears to be 'naughty' behaviors    responses.

Let's go with a common one that I hear almost daily.The following is an example only, and does not represent any one person.

 Little Johnny walked up to James and punched him. When the teacher saw, she thought to herself, "oh, here we go again! Johnny is such a brat. I am tired of him. He needs some serious discipline. I'm going to let him know he can't behave this way. His parents really need to do something about him. I'm going to let them know about how much I don't appreciate their child's behavior in my classroom!"  The teacher doesn't understand Johnny's autism. She thinks he's naughty and already has that biased in her mind that he is, which means she's always on the lookout for behavior to correct from Johnny. She feels compelled to let him know that his tactics will not work in her class. Any positive behavior is now overlooked by her and negative behavior is exemplified. She relentlessly calls and emails Johnny's mother, who feels embarrassed that her child is misbehaving.  Maybe, she feels angry that the teacher doesn't handle it very well, but since in our society having a child that acts out is seen as parental failure Johnny's mother feels powerless.  She sees this situation as a reflection on her parenting ability and allows the teacher to talk down to her, back her in a corner and influence how she deals with Johnny when he gets home.  Johnny's mom makes decisions based on her emotional reaction to the situation, which is to punish Johnny for misbehaving.  This further frustrates Johnny.  The cause of his behavior is never addressed, he learns that he is always to blame, so he acts out more. The cycle continues until he's an adolescent and now angrier than ever is physically intimidating his family. Johnny has never been given the right supports to deal with his autism and his emotions. He has learned that he is always the bad guy, the wrong one, and that no one has his back. He acts like he feels, which is out of control. He lost the game before it even began.

Sound familiar? So what can you do?

*The first thing to do is to learn as much about autism as you can from those who have it. If you're here, there's a good chance you're already doing that.

*Make a decision that you will try to objectively view every behavior your child has as a direct response to something.  This means, try to get to their level and see through their eyes. It is unlikely that they are doing anything to just upset, or manipulate you. Get that out of your head now. Every behavior is a communication about a need. It's your job to figure out what the need is.

*Which brings me to the next part. Put on your detective hat. If you can't automatically figure out what your child keeps getting upset about, keep a behavior journal. Write down any emotion changes in a chart.  See if there are any patterns.

*Put on your advocacy hat. Don't let school officials talk you into the corner.  Be confident. If you struggle with this, find someone to help you.  I have not gotten one call from the school about either of my boy's behavior. They know that if they did, I'd demand a Functional Behavior Assessment and call a meeting. I would be in the classroom observing (which I do time to time anyway) to see what supports they need to be more successful.  The school staff know this. They know I expect them to support and respect my kids and will have to deal with the business end of a advocacy lawyer if they don't. 

*This point may raise a few hackles.  I'm going to put it anyway. It's what I truly believe. If the school can't get it right, or other program, then don't continue to send your child there. Sometimes, you can make the school or other program comply by law for certain things, but you can't control how they talk to or treat your child. My youngest qualifies for Extended School Year. I dislike the staff and have a strong feeling that things aren't always positive and on the up and up there. I don't send him.  He needs it and it's great for me to have that break, but it's more important to me that my son is treated well, so he does not attend summer school.  I never want him to feel like my needs come before his, or that I won't go out of my way to keep him safe.

*Do not punish meltdowns. Ever. Remember that a meltdown is a direct response to something. Solve the problem, and the behavior will go away.

*Learn about Positive Behavior Supports and how to be a consistent parent.

*Learn about sensory issues and how to help your child with those.

*Keep things on a routine as much as possible. Use visual schedules or written ones if your child needs it.  Remember that transitions are hard for us.  Count down before sudden changes. Example: "We will be going home from he park in 10 minutes" "We will be leaving in 5 minutes.." ect.. Don't just suddenly decide that things need to happen, then wonder why your child is suddenly aggressive, eloping, or crying.

*Learn about Executive Functioning issues. Use some of the strategies mentioned in the paragraph above to help your child best process information and prioritize time.

All of these things, if done for the ASD person, will provide an optimal level of support, and when ASD individuals are properly supported you will automatically see a decline in behaviors. 

Life Pre-Autism

I found this picture while I was cleaning today. It was taken about 8 1/2 years ago while my grandmother was visiting. She wanted a family picture. I tried to tell her I didn't think we could really get my kids to sit and take one, but she insisted. At that time, autism wasn't a term I knew anything about. This is life pre-autism. Not necessarily pre-autism symptoms. Just the label of autism. All the trials were there, though I had no name for them at that time. In the background of the original pre-cropped picture you can see around the corner into my boy's room. You could see that there were toys and things laying everywhere. This was because Bubby used to disassemble his entire room everyday, several times a day. He emptied every shelf and every drawer. I would clean it up and the next day he did it again. This was my reality. I knew he was a handful. No one would watch him. Every sitter would call my husband and I before we were even finished eating while out on dates. They could not deal with his energy and his fits. He was likened to the Tasmanian Devil on Looney Toons. I would agree with that assessment at that time. I learned that I could not trust others with my high spirited little guy, because they thought he just needed some discipline. Relatives were not nice to him, as they thought him to be spoiled. Beans is laughing and Bubby is screaming. Bubby screamed all.the.time. We have very few photos of him before the age of 5 where he wasn't screaming. Beans was pretty happy most of the time, regardless of what was going on around him. His mood was not determined by environment. As a matter of fact, as he grew I noticed that he didn't respond to much in his environment, at all. In this moment, this was my life about 1 year pre-autism. It was a quiet kind of chaos. You can see it in my face the way I am trying to hold it together through my exhaustion. It's a bit of a sad memory for me, as I wish I could reach out to the younger me in the photo. To let myself know that my kids are different, but okay. That I was different, but okay. That I was not the failure I feared myself to be. My confidence was shaken by what I didn't know and didn't understand. I wish that I could have gotten some of the support I needed back then. That's why I try so hard to do as much for the autism community as I can. I want to help other young parents out there that are as lonely, and scared as I once was. All parents deserve a place to go where they can get the answers and support they need.

My Blissfully Active #Asperger Brain

I have spoken before on my FB page about the inability to really feel boredom.  

Let me clarify for a moment what I mean by boredom. As defined by Merriam-Webster;  the state of being weary and restless through lack of interest. 

This is different than the feelings I might get from say, melancholy, or restlessness that is borne of impatience (stuck waiting for something/someone for example), or discontent, which can be like restless.  These moods are directly related to situations, or limited ability to do or be something else. To me, boredom is by definition, lack of interest in anything anywhere no matter what.  I don't get that emotion.  This was first brought to my attention while I was attending social skills therapy with my son as a follow up after diagnosis. We were working on facial expressions in a mirror. We were told to make a bored face. I couldn't. I had no background for that emotion. Bubby did, but I know from experience his 'bored' means something is too hard and he doesn't want to do it, so he announced that it's boring, or he's impatiently waiting for something. I don't think either of those really qualify as bored. The therapist insisted that I had to be bored sometimes. I said I didn't. Even when there was nothing to do physically there is always something I can think about that's interesting to keep me occupied.  My mind is never dull or out of ideas.  I have so many that it keeps me up at night. I have so many plans and thoughts that I am unable to do half of what I think about.  

I saw this photo and I was instantly in love with it. It really resonates with my active mind and inquisitive spirit.