Friday, December 28, 2012

Conversations With Bubby: You Don't Look Like You Have Asperger's

Conversation this morning with Bubby:

Bubby: Why do you always do work on autism, and asperger's?

Me: Because, it's what I am interested in.

Bubby: Is it because you have Asperger's?

Me: Yes, but it's also because it's what I like to do, and learn about. Just like how like Minecraft, and Family Guy.

Bubby: And South Park!  You don't look like you have Asperger's.

Saturday, December 22, 2012

No Homework- A guest post by Bubby

This piece was originally written by Bubby, my 11 year old autistic son for a school creative writing essay.  He worked really hard on this.  I know creative writing is very difficult for him, but I thought he did an excellent job with this one, so I wanted to feature it here on my blog.  

For more information about creative writing and why it's hard for some people on the autism spectrum visit this awesome article shared with me by Leah at 30 Days Of Autism.

         No Homework                    

Wouldn't it be fun if we had no homework?  I think all kids would agree. Would you like no homework?

We get more time to play at home.  The games we like, instead of homework.  The next reason is we work hard all day, so I need a break.  Finally, homework gets people upset, and people don't like to cry.

I hope teachers would stop giving students homework. We would be much happier!  

Sunday, December 16, 2012

#Autism Is

Autism is..... A squeal let out on a high EEEEEEEEEEE

Autism is...... A look sideways at something unique

Autism is..... A feeling of awe from a deep touch

Autism is..... knowledge gathered, like an expert

Autism is...... A line of cars colorful and bright

Friday, November 23, 2012

Tackling My Food Anxiety

Here in the US, yesterday was Thanksgiving. It started out rocky with me dreading the social gathering of my husband's family.  I knew that I would be okay in the end, but getting there was harder said than done. My anxiety built all morning, as every minute ticked by.  Despite the positives of the morning so far I was feeling more and more on edge. I had an opportunity to sleep in a bit, and wake slowly as my husband made breakfast for the kids.  I could not feel calmer, but one thing that was different than years past, I knew that I was being irrational.  I knew that I would be okay in the end, if only I just pressed forward and kept a positive attitude.

The other part of the day was that was difficult for me was that Thanksgiving is a holiday about food.  It's all about food and as many of you that follow my blog may know food is something I have issues with..  I was almost paralyzed in fear of the thought of eating all that food. Some of my thoughts were:

Monday, November 19, 2012

Why I Hide In The Atheism Closet






For many years my favorite song has been 'Imagine'  by John Lennon.  I seem to find that it is on many people's list of favorites.  It was brought back (as if it ever left) by A Perfect Circle, which is one of my favorite bands.  I can listen to it for hours, back to back.

I like the song for all of it's lyrics. I am an atheist. I don't believe there is a God. I don't think there is an afterlife.  I think today, right here, right now is all we have. I tried to be a Christian.  I tried Wicca. I tried several differently philosophies and have come to atheism, with a hint of Buddhism (which no deity is involved with) to be where I have comfortably settled. After researching, living and trying out different ideas I am pretty happy with being where I am. So, you may wonder, why is it you never talk about it?  Are you ashamed of your stance?

Thursday, November 15, 2012

Choices +Actions= Values A simple way to explain values to teens

I sat in the living room listening to my husband have a frank chat with our daughter last night about some of her recent behaviors last night.  I didn't intervene. I let him take the wheel.  This, I knew to be beneficial for them.  I don't always need to be the enforcer or the one who is solving the problems.  The issue is, if I am letting him solve them, I have to respect his process, which is often different than mine.  I may not have gave up that much control with Bubby, because he doesn't always understand Bubby the way I do. However, CJ is her father's daughter, for sure.  She may look like me, but she has his personality.  He understands her in ways I do not, as well as can read between the lines in ways I don't know how to.

There was a point I wanted to make, though. I did exercise all of my self control to not interject it.  I kept it 100% to myself, until now, because I will likely share this with them. lol

That point is:

There is no good or bad.  There are only choices. You make choices based at any given moment about what you value. Your values are not what you believe is right or wrong.  Your values are what you express by your actions. 



Right now, I am choosing to blog while I have lunch, instead of eating quickly and getting to my housework.  My actions are saying that, to me, in this moment , I value this blog over the 20 minutes I could be spending elsewhere.  It's not right.  It's not wrong.  It just is.  I will have consequences for that. Some positive,ie, I may help my daughter or someone else understand themselves, their choices and what matters to them most. Their are negative possible consequences,ie; I may not get everything that I need to done today.  By choosing this I am choosing those consequences.  Both the good and the bad.  Those were my choices, those are my consequences for my decisions and I am responsible for them.  We all do this everyday.  Every decision we make is a reflection of what we value and we have the ability to change more about our lives than we ever imagined if we stop and make our choices mindfully.  What we eat, what we wear, what we say, what we share, what we keep, these are all reflections of who we are and what we value. We aren't the past, or the future.  The only thing we can control is the present and we do that with our actions.

When I think of this concept part of the lyrics from The Dark Side Of The Moon-Eclipse come into my mind as an example of what I mean:

All that you touch
All that you see
All that you taste
All you feel.
All that you love
All that you hate
All you distrust
All you save.
All that you give
All that you deal
All that you buy,
beg, borrow or steal.
All you create
All you destroy
All that you do
All that you say.
All that you eat
And everyone you meet
All that you slight
And everyone you fight.
All that is now
All that is gone
All that's to come
and everything under the sun is in tune
but the sun is eclipsed by the moon.


Monday, November 12, 2012

My Never Quiet Mind

I know a lot of my autistic blogger friends have been writing about special interests lately.  I have thought about doing a sort of post about it for awhile, but one has never materialized in my mind, or at least not in a way that has produced results.  I think about things to write about all the time. So much so, I have considered trying to make it into an actual career. I am always flowing with ideas to and topics that I want to discuss. This is because I never stop thinking.  My mind goes and goes.... So, what leads to this?  What does this feel like to me?

It is like I have a deep need for knowledge. It's more than a passing thought of I'd like to know more about X, or Y. No, it is way more than that.  I feel a drive that is not containable.  When something peeks my interest I feel such an overwhelming desire to know more about it that it is more important than most things to me.  It is a constant battle for me to get things done that I know needs done, while allowing myself the time that I need for researching and reading.  These interests can last a day, or years.  Sometimes, I have mini-interests that I research for an afternoon.  I will spend a couple of hours, or even a few hours over a course of a couple of days looking up information about an obscure topic that really has little bearing in my life.  At least, not enough to warrant that much time spent, according to most people, anyways.

I collect all of this information in my mind and it sits there, interconnecting with all of the other information that I have learned.  Once I read something, I rarely forget it.  I will remember it forever, as well as have the ability to link it up with new information in a way that allows me to have a broader understanding of how everything works.  Sometimes, I have facts that I know that I don't even know how or why I have that knowledge.  I just know it. 

Examples, of some of my search history on my computer,

*BMI charts, weight loss programs, and exercise programs. I know way more than any average person about all those things.

* Topographical Agnosia and well as directions to get to anywhere I ever have gone.

*ICD code for Aspeger's and autism-Autism is another big one, as well as other related disorders. 

*Craft project ideas for Halloween treat bags

*Dog related stuff.  Hours and hours of research about what kind of dog we have as well as how to train him.

*Post mordem photography- an afternoon of research into this little tradition.

* Lyrics to songs I like- lots and lots of those.

 *How to prepare squash, and every other thing I've made recently

*How to....get glue off of jars, train a dog, tell if _____ food is any good, cook _______ food, make _______ thing, fix __________,  Just endless How to's in my google search bar history.

To be clear here, I know that other people look up stuff on line.  I know that's not abnormal or odd. What makes it a bit so for me is the time I spend doing it.  I almost never go to one Google page of results and be done with it.  No. I read pages upon pages of information, sometimes, even taking it on a long string of unrelated topics, eating up my time and filling my brain with info that us probably not all that useful in a practical sense.


But, in truth nothing makes me happier than when I am learning.  It is the thing that makes my day good.  It is the substance I crave. I always need to know more. I am thirsty for information from that minute I wake up till the minute I go to sleep.  I can't think of  how awful life would be if I suddenly couldn't read anymore. If I suddenly lost my ability to be able to explore every little nuance that gets my interest.  My mind doesn't stop. It's always absorbing and needing more to digest.  It is an obsession, but one that is happy and harmless.  In this bliss I often forget that others don't feel this way. It's hard for me to comprehend that others find learning difficult, or boring when I look forward to it everyday with a childlike sense of joy.


Tuesday, November 6, 2012

Where Am I? Confessions Of A Place Blind Aspie


I have been working on this post in my head for a long time. I go back and forth on how to present this subject. It's one of a very delicate matter that carries with it a lot of sensitivity to me. To be honest, I have not wanted to talk about it, as I was afraid I'd be told I was just being exaggerative or that I need to stop making excuses for myself.  I hide this secret inside of me away from everyone, because I feel ashamed and like I have no assistance in making it better.

So do you want to know my secret-y secret that I hide away from anyone and everyone that I can?

Topographical Agnosia    Or Place Blindness.

What is place blindness?

Taken from here:

"Often confused for being absentminded or lazy, people with topographic agnosia have no innate memory for places. Just as a person with face blindness has a short-term memory for faces, the person with place blindness has a short-term memory for places. This means, that a person living on a street for five years would not be able to recognise the other houses on the street or in the neighbourhood if seen out of context. In testing for place blindness, a husband asked his place-blind wife to keep her eyes shut while he drove around their neighbourhood. He stopped in front of a house four houses down from theirs and asked her to tell him if she had ever seen it before. She hadn't. Despite their many walks in which they had passed it, she had no memory of it. Topographic Agnosia also explains why a person who loved hiking and being out-of-doors would never go by herself and couldn't remember the individual hikes. Unless they included waterfalls or a unique bridge or old growth, all the hikes looked the same to her."

This means, that to me, every time I go somewhere it is like the first time, even if I have been there many times before.  If I go somewhere everyday and get a strong sense of landmarks committed to memory, then I will be okay, but if I skip several days  in a row my memory will begin to erase itself and I will have to re-learn the route. This means that if I were brought into an unfamiliar area I could not find my way back home from which I just came minutes before.

It is not just limited to driving.  I get just as lost on foot, as well. If I go out different doors in a big building I cannot find my way back to a parking lot. I did this one time when I dropped my daughter off for practice at night at an unfamiliar part of the school. I must have accidentally went out different doors and I spent 45 minutes walking around the block and the school until I finally had to ask someone which way the parking lot was. It was humiliating.  Or, the other day I went with Beans to his Halloween party. The teacher wanted him to participate with the mainstream 3rd grade class, so him, his para and I went to the classroom. I had been to this part of the school a handful of times over the last few years. He (as I predicted) became overwhelmed by the noise in the classroom, so his para asked me to take him back to his classroom while she gathered up his treats. I thought no problem, right? Yes, problem, Upon exiting the room I had not remembered to consciously note any landmarks. I had no idea which way was which. It was essentially to me as if someone had picked me up and sat me down in the middle of an unfamiliar, foreign environment, even though I had just came from that hall not seconds earlier. I stood there trying to remember anything that could help me navigate my surroundings, then pondered if I could make it back on my own, so I tried one direction hoping I get a glimpse of recognition on the other end of the hall, but no, so I thought the safest thing to do was to wait for his para to come out of the room before I got us both hopelessly lost in the building!

I find driving difficult as it is. It's hard for me to multi-task in the way of paying attention to so much stimuli at once. Add place blindness on top of it all and I am hard pressed to go anywhere new or with high traffic. So many things need to be done before I can even attempt to go anywhere I am not familiar with.  I used to rely very heavily on my Garmin, but that was in my purse that was stolen a couple months ago. That navigation system was my safety net, my saving grace.  Now, I'm back to the old days where if I get lost while driving I have to call for help while trying to describe landmarks, because I don't remember streets and I have absolutely NO idea where north, south, east and west are.  These things are way above my ability to even comprehend how others know them.  So, the thief that took my purse has no idea, nor probably cares about how much of a predicament he put me in.

Other coping skills include:
*heavy use of google maps where I can visually get a sense of what the destination looks like.
*written directions with lots of landmark info written in, like when there will be a stop sign, what the destination is by ect
*how many stop lights I have to go through, so I don't panic and think I've gone too far.
*a back up route, in case the one I have is blocked for some reason
*lots of extra time in case I get lost
*someone to go with me
*No night driving unless it's an emergency or only a few blocks

This issue is by far the most damaging to my life. This issue is the one that drove me to get a diagnosis, because I was hoping that there was some therapy, help or assistance for it.  Not only was there not any, but I got the usual agoraphobia/generalized anxiety  excuse tacked onto my Asperger's diagnosis, which was very upsetting to me, because I really wanted help with this.  The clinician was not only ignorant of the disorder, but insisted that it was my anxiety that was causing to me to have these issues.  I insisted that getting lost most definitely causes anxiety, but it is not caused by anxiety.  I was offered social skill therapy and that was virtually all. I left depleted and misunderstood, even more so than I was before going.

So, I try to make my way through as best I can.  I hope by sharing this I can help others who are out there suffering in silence.  It is estimated that up to 1/3 of those with Asperger Syndrome have place blindness.  I know that I can't be the only one and I know there has to be more research done on this difference to help people like me understand the way we perceive visual/spatial information, but the only way that is going to happen is if more people are aware it exists in the first place.

More info on Topographical Agnosia:

Getting Lost














Monday, November 5, 2012

Daylight Savings and 12 Black Rainbows

Yesterday was the first day in Daylight Savings. People always get pretty worked up over still having to turn our clocks back and forth, "in this day and age".  I am beginning ti suspect that I am the only person that not only doesn't mind it, but sees a point in it as well as enjoys it.

Hear me out.

I have Seasonal Affective Disorder. I like the sun. I need the sun.  I want to soak up as much of it's deliciousness as I possibly can every day between November 1st to April1st.  Those months are hard for me.  If we change our clocks to a time where we are awake more and utilizing more hours of sunlight I get more of a chance to do that.  I also don't like it when my kids are walking to school in the dark, so I am okay with them going an hour later in fall, and winter in order to achieve that.  I also think it is better for energy conservation if we can use as much natural light as possible. Even an hour a day is a big deal when we consider the masses of people that are using less electricity to light their homes for that time.

Since this is a kind of off-topic fun type of post I thought I'd share a song that I ran across this morning as I wrote this post. It's by one of my all time favorite bands Type 0 Negative. The lead singer had bipolar and was very prone to severe depression.  This song is about that depression and since I talked a bit about darkness leading to depression in this post I thought that this might be an appropriate video:









Idle hands may be the devil's work
Unbridled minds you see are so much worse
Too much pity spent and wasting time
Irresponsibility not my only crime no

Obsessive thinking, depressed drinking
The person i once was, he's dead
Exhume the past this time or be my last
This is my final quest to remove my mask yeah

Don't be afraid as she pulled down the shade
Said there's nothing to fear but the monster is here
So just tell me the time, be it quarter of nine
Since the sun's gone away, now the creature will play

Ice blue eyes follow me everywhere i go
Making my heart appear as lead
I hate to wish it but I'll tell you though
That i'm quite ready 'cause I'm already dead

Don't be afraid as she pulled down the shade
Said there's nothing to fear but the monster is here
So just tell me the time, be it quarter of nine
Since the sun's gone away, now the creature will play

Don't be afraid as she pulled down the shade
Said there's nothing to fear but the monster is here
So just tell me the time, be it quarter of nine
Since the sun's gone away, now the creature will play

Thursday, November 1, 2012

Happy Birthday Bubby!

Tomorrow, November 2nd is Bubby's 11th birthday. I made this post so that he could see all the people that follow my page and know all about him. If you would like to sign his virtual e-card here, and wish him a happy birthday please do so in the comments section. Thank You!



Wednesday, October 24, 2012

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.

Wednesday, October 17, 2012

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.

Wednesday, October 10, 2012

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


Monday, October 8, 2012

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.



Saturday, October 6, 2012

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.



Thursday, October 4, 2012

The Ultimate Self Accpetance Test

Yesterday, I saw this image:

 I posted it on my FB page and to my surprise a few people responded with reservation, or flat out 'No' to the question in the image.  I'm unsure of what to make of that.  If you follow my blog you will have seen that I struggle with depression and it's side kick low self-esteem.  It's something that has plagued me for as long as I can remember.  However, I can say with certainty that I think that I am a good person. A person that is worthy of friendship and love.  I think of the qualities that I think make a good companion:

*Honesty
*Kindness
*Loyalty
*Reserved (at least not overly loud and boisterous)
*Understanding of other's struggles-even if they are foreign to yourself
*Unique
*Assertive
*Generous
*Practical
*Down to earth
*Tenacious   
*Dedicated
*Reliable
*Strong work ethic
Just to name a few. I think that I embody those. I actually spend a lot of time thinking about how I come across to others and whether I am putting an image out there that I can be proud of. I try to be a person that if I met myself I would want to be friends with.  This is the ultimate in self-acceptance. If you can't be friends with yourself, if you can't like yourself, or hold your actions in the light of esteem, than how can others? Why would you not want to be friends with yourself?  If there are specific reasons, those can be changed once you identify them. If you just feel uncomfortable with the idea, then it's time for some deep soul searching. We have to be comfortable with who we are to be truly fulfilled. That is just a given. If we can't be comfortable with our inner self, we can never be fully grounded.  We risk spending a life running away from our shadow, fearing alone time. 

What qualities do you think makes a good companion? Do you feel that you posses them?

Tuesday, October 2, 2012

Why Spanking Is Harmful

It seems that a week can't go by where there isn't some thread on a public page on Facebook where people are voraciously arguing over Corporal Punishment.  From what I have gathered those for it are in the minority. You might not know it, based on their reactions, but I always find that to be a good indication of how valid one really think their opinion is. If I know my actions are noble I won't feel the need to get over the top defensive if someone doesn't agree with me. I don't need them to tell me I am right, or agree with me to feel validated. If I feel confident in my own decision, then I will be able to have a civil debate about why I think the way I do and be okay if I can't sway the other party to my 'side' as it were.

So, what does science say about spanking? One recent study showed a clear association with

 "the proportion of illnesses such as depression, anxiety, alcohol and drug abuse as well as personality disorders that may be attributable to physical punishment".

 Another states
" Despite American Academy of Pediatrics recommendations to the contrary, most parents in the United States approve of and have used CP as a form of child discipline. The current findings suggest that even minor forms of CP, such as spanking, increase risk for increased child aggressive behavior. Importantly, these findings cannot be attributed to possible confounding effects of a host of other maternal parenting risk factors."

Those are just a couple of the studies that have shown that spanking isn't beneficial to any child for any reason, for any age. I can't find one study that says it is. If you have one, please share it with me. The interesting thing to me is, even though it is not recommended by any expert that knows anything about child development, the studies say parents continue to do it anyway.  This leads me to believe that we don't have enough information and know how to discipline differently. As humans we do what we know, even if it's not effective. We're creatures of habit and tradition.


My other issue with hitting kids (and make no mistake anytime you spank your child it IS by definition hitting them) is that it's illegal to hit anyone else, so why are children not afforded the same right?  If your spouse, neighbor, or waiter pisses you off you aren't allowed to hit them. Even if they lie to you, steal your stuff, or otherwise do something off the wall morally wrong. You are not allowed by law to hit them unless it's to defend yourself from harm. If you do, you can be arrested for assault. So, why is it okay to hit a little defenseless person?  What if you do it just enough to hurt them, and teach that neighbor of yours you mean business? Is that legal? No. So why is it legal to do it to a child. Hitting is hitting.

Before, all of you think that I am on my high horse, I will admit to using spanking a handful of times with my 2 oldest. I stopped, because it seemed not only ineffective, but it seemed to make their behavior worse. I set out to find another way. 

Different things work for different kids. All kids respond to some form of positive behavior reinforcement . Maybe, some need more redirection, frequent rewards and support than others, but they all respond to it.  No matter how stubborn, ornery, or different you think your child is, I guarantee you they will respond to some sort of positive behavior plan.  Everyone does. When we don't go to work our boss doesn't come over to our house and hit us. We simply pay the natural consequences of that decision.  I try to mirror that as much as I can with my kids. I try to relate any punishment or reward to the actual behavior itself.  If they don't do their chores, they won't get their stars on their chart, and they won't have money. The same with if we don't earn income. I don't buy them a lot of stuff. If they want toys and games, they have to earn it themselves. They don't throw fits at the store, because unless it's a special occasion they aren't expecting a toy. When I say no, I mean no. Every time, always. You throw a fit about my answer, you lose privileges. Consistently. I don't yell.  I don't threaten. I state my expectation and they know I mean what I am saying, because I am consistent in following through.  A lot of the time I see kids having bad behavior, because the parents reinforce it. Do you go back on previous no's, because you don't want to hear the whining? Do you let your child behave badly until you finally explode and yell, instead of getting the situation taken care of immediately?  Are you inconsistent on rules? Letting them sometimes do things that are against the rules, because it's easier for you in that moment, than to exert the energy to correct them?  When they fail to do something in real life, say at school, do you rush to bail them out, or do you let them handle the consequences of their own behaviors?

Conversely, when your children do something right, do you tell them? Eg; "great job making your bed, getting a good grade, helping a friend.."
Do you always stand up for them when it's warranted showing them that you have their back? Eg; The school is treating your special needs child in a way that is unfair, so you put your own feelings of shyness, busyness, ect... aside and take care of the matter.
Do you allow them times and space to be them, instead of micromanaging their time and activities?  Eg; allowing them time to watch tv and be on the computer without huge time constraints,  ect...
Do you allow them the individual freedom to choose, even if it's you don't agree with their decision (age appropriately, of course)? Eg; Allowing them to choose their own fashion, sports, friends, ect..

These are all examples of fostering a child's well being in a sense that allows them to feel good about themselves, and the world around them. When a child feels safe, secure and grounded they have the better tools to choose their behavior, rather than going on a series of impulsive reactions.

So, what is your preferred method of discipline? (Please note that I won't delete any comments, but I also won't respond to nasty ones, either)

And above all, please remember:

Punish the behavior, not the child!

Sunday, September 30, 2012

Do I Know You? ~This Aspie's Experience with Face Blindness.

I can feel him casually glancing in my direction. I make a point to look away and not  make eye contact, because I don't feel like having polite conversation at the pool with strange men I don't know.  Eventually, we cross paths and he asks me how I am. I can tell by his demeanor that he's not a stranger. He is someone I've met before and should be acquainted with. I search the pool to see if I recognize his children. I'm looking for any clues that can help me here, but none come. I just make small talk and try to figure it out later. It turns out to be one of my daughter's friend's parents. I've spoken to him in the last couple of weeks. I should know who he is.

The above scenario is probably something that has happened to most people before at some point, but for me (and many others on the spectrum) it happens often. There is a phenomenon called face blindness or Prosopagnosia.  I am unsure if I fit the criteria for this diagnosis. I took the face blindness test of famous faces and scored 93%. That is above average. I have no trouble identifying faces of famous people, even those I have not seen in 20 some years. My memory is quite good in that way. However, when social interaction in everyday life is introduced to the scenario I seem to lose the ability to identify acquaintances.

As you can imagine, this is troublesome. If I run into someone, say at the store it is very likely that I will not recognize them. I live in a small town, so it is certain to happen often, just based on the statistics alone.  So, maybe you are one of the son's paras, the secretary at the school, or the bank teller, the principal that I've sat through 10+ IEP meetings with, or my neighbors.... I will walk past you as if I've never met you, unless you make the first move.  I'm certain that this doesn't help my social life, as I know that I come off as snobby. It has to be terribly confusing to others, especially the ones that I warmly chat with on a regular basis to suddenly find me oblivious to them in another environment.

I wonder if Beans has this issue, too. He always smells people upon greeting them.He reaches out and grabs your clothes, and hair and sniffs.  I think he may be trying to identify who you are by your scent.

If you took the test, feel free to leave your score in the comment section, as well as any experience you may have with this issue, either with yourself, or your ASD loved one.

Wednesday, September 26, 2012

My Idea Of Being Spontaneous!

The other day I was shopping in Dollar General, waiting for a prescription to be filled. I had time to kill, so I wasn't running through the store doing my shopping in the usual beat the clock fashion. I typically dislike shopping and see it as a chore to get done and over with as soon as I can.  I happened into the Halloween aisle. I am one of the people that is always practical.  I don't see the point in spending money on things that aren't functional.  I am boring. My husband is the one who buys the holiday decorations and is often the one who puts them up. Most that I have come from relatives, no doubt looking to spruce my boring bare walled decor up!  

I didn't notice at the store that it's eyes are all wonky. Fits our home perfectly!
Anyway, I thought that maybe, it was time for me to be a little bit spontaneous. It was time for me to spend a few dollars on something that really has no practical purpose.  I bought a Halloween decoration for our yard.  Just a little something that symbolizes me doing something a little different, trying new things and breaking from the routine, even just a little bit.

Tuesday, September 25, 2012

Discussing staring, and #autism in public- join the conversation!

I shared the above image on my FB Page and Marilyn G. commented:
"Wanting to share and needing input. My autistic son was always a quiet one, so I never had to experience some of the feeling that you have. Many times I have been out in places and there has been a child being "loud". My immediate response is of concern and my reaction is to look at the child and the situation to evaluate in lightening (super mother power) speed if everything is ok with the child (I have seen a child being verbally abused in a Target to the point of tears before). I have never judged that child nor their parents during the "loud" period. But now because of so many posting saying things like glances or judgements of strangers, I feel that I can't look over to see if that child is ok, because I am afraid of offending the mother or father just for looking their way. My heart is going out to the child and even the parent in that moment, yet I feel that I will be misinterpreted and actually cause that mother or father more discomfort than if I had just not turned to see if all was ok. Is it possible that this is a real thing that occurs and some are to quick to judge? How can I feel comfortable caring?? I want to feel my heart go out, but I am concerned that just my glance would cause pain for mom or dad....where only understanding and connection is happening....not even a word spoken...not even one bad thought ever."

This was a very good question.  It forces the people that have special needs kids to answer some difficult questions about why we're offended, what if a child is in danger (meaning not ASD, but rather something is wrong) can we look to evaluate the situation, so that we ca intervene if needed?  How do others know when it is okay to look, or when it's hurtful?

I saw a program the other day called Head Games on the discovery channel about staring.  They basically set up an experiment in an auto shop waiting area where there was about 4 or 5 actors sitting around. In would come the clueless person that had no idea that the experiment was happening. They all acted friendly at first, but then gradually they all started staring at him. First, subtly, then not so subtly, then pretty much blatantly in his face stare downs by every person in the room.  In every situation the subject got up and left.  The psychologist explained that in a situation where someone is being stared at in public it automatically switches on the fight or flight area of our brains. (Most of our brains, that is... ) Humans are social creatures, so when people stare they are identifying you as not one of them. You don't belong in their group and you are not welcome. This makes the primitive part of our brain react . We get nervous, and have to figure out in a pretty quick hurry, are we going to defend our territory, or are we going to run away? This is pretty hard wired into neurotypical brains. It all occurs on a level that you're not even aware of when it is happening.  I was happy to see this episode, because my brain does not react this way. I rarely see people staring, because I rarely look at other people, and when I do I don't look at their faces.  Unless, it is balntant staring with an obvious expression of negativity I will not notice, nor will I care.  This explains to me why NTs act the way they do, and now I can understand their POV better, I can back off the judgments about them being dramatic about stupid things that don't matter. Now I understand, they can't help it.  It's how they're hardwired, the same as I can't help the fact that I don't look at all that social information that is happening around me.

Now, we understand why people get so upset when others stare at their special needs child, what can be done? Can we change the way we react to stares? Can we choose to respond differently, even with our brains sending us into fight or flight mode? Yes. I think we can. I think a little bit of knowledge can go a long way.

First, I want to point out that the majority of the people that I actually catch staring are doing so, because they know about autism and want to approach me and my family.  They want to say something, but don't know how to approach us.They want us to know they are one of us and belong to the autism community, or they saw my van sticker and want to know where they can get one.  They are analyzing and seeing if it's okay. I have that happen every so often and I do the same when I see a child/person with autism.

Sometimes, they don't know much about autism, but know that my Beans is obviously not a typical child and they want to acknowledge him. They want to include him and say hi to him, just like they do anyone else.  It's their way of non-verbally acknowledging to him and us, "I see you.I acknowledge your presence. I accept you here as you are in this public space and I support you, but I can't just say that, because that would be odd." So, they stare, often times until they feel comfortable enough to say something.

Then, you have the people that don't know about autism and don't know what to think of Bean's noises and movements. They stare wide eyed and oblivious to the fact that we can see them staring. I think this is the most common. People will look at things that are different. It's in our nature to identify differences and try to figure the situation out. I find it illogical to go out into public and expect people to NOT stare. In my life, that is just pretty much setting yourself up to be disappointed and upset, as well as making a big deal out of every public venture with your ASD child. It does not help their self esteem for you to do this, believe me, I know.  Learn to let go and be okay with others looking and your kids will, too.

Of course, you do run into the people that really believe that people like Beans should not be out in public, being noisy and messing up their idea of a perfect world. Unless they are directly interacting with you, I say ignore them.  Let their discomfort about their own personal hang ups be their own.  They have to live in their narrow world, but you don't.

So, how do you feel about staring? What would help you to be more comfortable with others that are just looking out of curiosity? What advice would you give strangers that just want to support you and give you encouragement in public on how to go about that?

Tuesday, September 18, 2012

Disobedience or Ethical Nonconformist?

I'm sure that many of you are aware of the Milgram Experiment where the subjects of an experiment thought that they were shocking someone in another room on the orders of a scientist, sometimes up to lethal levels. There was no real harm (no shocks were administered) involved, but the subjects didn't know that. The experiment was to see how regular people behave in the face of what they perceive to be authority.  The experiment was repeated recently in this program that I watched on the Discovery Channel How Evil Are You .  The subjects fared even worse in the realm of empathy for the person "being shocked" than they did years ago in Milgram's experiment.  They went further, questioned the scientist less, and only one (that I recall) stuck with their own ethics and what they knew to be the right thing to do.  All the rest said they didn't want to keep shocking the other person, but did so unless a peer was introduced at the same time to back them up. Almost none wanted to go against the grain and be a nonconformist.

I saw this type of thing play out on my own life about 2 or 3 years ago.  Every seven years or so we have to take the boys to get re-eveluated to keep their developmental disability services.  The state requires us to take them to a psychologist so that they can be tested for IQ and well as ASD.  Of course, they still have autism every time, so I find it to be ridiculous, but....not what this post is about!  We made an appointment with one of the approved psychs listed.

When we got there it was one of those older style Victorian houses that was turned into an office.  First visual clue to me that this might not be as professional of an operation as an actual office building.  We get paperwork started. As we sit in the waiting area a very old man peeks out and tells the couple sitting near us that he's done.  They go in and carry out what I assume is their daughter.  She has some kind of muscle disease and appears unable to really move her body willfully, or speak. Second red flag.  Why did he need to be alone with a child that cannot speak or communicate?  They had the same papers as we did, so they were there for the same reasons we were.  I doubt he had some kind of communication system set up with her and there was no keyboard or PECs or anything to suggest otherwise that I saw.This is was likely the first time he's met her.  The whole situation didn't make sense and my aspie brain does not like nonsensical things.When I encounter nonsensical things in my everyday environment it causes my brain to freeze and inquire as to why. Things that don't fit together have a reason, even if it's a small detail. My brain detects this and sees this as important. I'm am not a see the forest for the trees thinker.

He asks for me to come in without Bubby to asnwer some questions.  When I say that this man is old, I mean he is (and the secretary mentioned his age, so this is verified) in his eighties.  I was looking around to see if he still owned a copy of The Empty Fortress!  That was I'm sure the standard for autism when he was in school.  He asked me a few questions, and said he thought it was Asperger's.  I told him he had not even met my son yet. How can he know? Every answer I gave that pointed otherwise he would try to get me to change it back to verify his already made hypothesis!  I tried to politely explain that Bubby has a speech delay that is still present and should exclude him from an Asperger diagnosis.  He then asked for Bubby to come in. Hubby followed him in and sat down. The doctor asked us to leave so that he could be alone to ask Bubby questions.  My husband immediately hopped up to leave.  I did not.  I politely told him that I would rather stay in the room.  He told me I could not. My husband left in a nervous hurry at the doctor's very irritable insistence that we leave. I repeated myself.   He then exclaimed "What do you think is going to happen?" very loudly and angrily.  I repeated myself again.  I was not moving.  He went on to ask Bubby questions that were way above his level of language to answer.  He was also reading off of a sheet that he printed from a well known AS website. Not a real clinical checklist.  Nope. It was as if he read Bubby's file and decided it was to be AS before we even got there. 

When we left the office, my husband immediately said to me, "What did he do to make you distrust him so much? It must have been bad!"  My first response to this was to think, wow, so you know that this person did something seriously over the line, yet you were going to leave your child with him anyway?  He said he knew he shouldn't.  He said he knew if I said it was dangerous then it was a bad idea, but he said he didn't feel as if he had a choice.  He didn't know you could just refuse to do what the doctor said, despite his own judgment about the situation. He simply said that he was unable to explain why he did what he did despite the his ability to know it was not a good choice, even at the time.

I watch a lot of these sorts of social experiment shows. I like to people watch. I always find it fascinating that people do what they do in the name of social conformity.  Not that it is always a bad thing.  We would not be a society like we are if people didn't.  There are good and bad sides of conformity.  The same with being a nonconformist.  Us nonconformists question when others wouldn't.  We ask why.  You know how every kid goes through the why stage? I went through it something fierce.  My mother, who likes to pretend she has the patience of a saint said, and I quote "Your why stage was so bad that it would make anyone want to jump out of a moving vehicle to get away from the questions."  I never stopped, really.  I still question what doesn't make sense to me, and I will likely never stop!

Monday, September 17, 2012

Moments That Make Our Lives Richer

Yesterday Hubby and I had the rare opportunity to have an afternoon to ourselves. It was such a gorgeous fall day that I thought it would be nice to go someplace downtown and sit on the patio of one of the restaurants for lunch.  The food was great and the patio was mostly empty, leaving us in peace.  Which was in stark contrast to the inside of the restaurant, which was full of rowdy people awaiting the football to begin.  I was so happy to not have to contend with that environment.

After we were done eating we walked along the brick streets of downtown looking at the various different shops and chatting.  Eventually, we decided to go grocery shopping, then home.

In all of the busy day to day activities I often forget to stop and remember these sweet moments that I am so grateful for.  It's these small things that make our lives richer. 


Wednesday, August 22, 2012

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.


Monday, August 20, 2012

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.

Tuesday, July 24, 2012

Feeling Overwhelmed By Negativity

I'm not sure where this post is going, or how to begin in the first place. It's partly formed inside of my head, but mostly it's just a big ball of emotion that I am untangling as I move along. I think blogging might help me to untangle it more, thus freeing me up to be able to feel unhindered, because right now I do feel hindered, and weighed down a little bit.

There is this thing that seems to drive a lot of human behavior. I don't know what it is called, or even if it has a name. It seems to be a sort of cohesion within groups that moves people together united in a common goal.  I don't understand it. I don't like to be involved in it. I feel completely overwhelmed when people around me are engaging in it. This is not just as autistic thing, because I have seen autistics engage in this form of socializing as well.

I can try to describe what I mean with examples.

Usually, this phenomenon begins with an accusation of outrage. Someone has done or said something that is upsetting to someone else. They then claim outrage. They take this outrage to friends, who also claim outrage and now the drama is on.  They are united in a common cause against this insult, this injustice, this miscarriage of humanity. They want the perpetrator of the insult to recant, to retract, to absolve their words and the harm they have inflicted with their words, or actions. They form a mob that will not let up until their attention gets turned somewhere else.

There is also the lesser form of the same behavior. Where there is something said (I'm going to use autism here, because that is the community that I am involved in, but I think this sort of thing isn't limited to the ASD community) in a book, or a news article about autism and the community goes wild with accusations of 'stereotyping' and 'prejudice' because what was said does not fit the definition for their own autism, or their child's. No matter, that the spectrum is broad and that it may fit others, usually quite a lot more severe than themselves.  It's as if no one is allowed to have an opinion, or use descriptive terms about ASD unless it is all inclusive of the whole spectrum, even those with Asperger's. I find that to be an impossibility most of the time.  The spectrum is wide and varied.  I also know that those same people will likely have all kinds of negative things to say about the way I used 'severe' to describe autism, because anymore there seems to be no way to describe anything within the autism community without being judged as this or that, or as being pushing stereotypes. I was on board the autistic's rights movement, until it derailed into this mess of no one being allowed to even speak for fear of being a target of voracious arguments.

When I am in the midst of this much negativity and complaints I soak it up like a sponge. No matter how much I try not to, I still do.  I feel heavy, and emotional. I get so weighed down in the negativity that I can't function all that well. I don't like this feeling. I'd rather be building up what I think is right, rather than finding what I feel is wrong and making it my mission to out this wrong.  For someone who has a history of depression my brain can only handle so much, before I start to feel down and out by it all.

Like, last winter my husband was not as busy with work as he usually is. The brought with it financial woes, but also time on his hands. He chose to watch the news with quite a bit of this extra time. So, here is someone who is already sensitive to negativity due to life circumstances watching 24 hour news networks where there is always something bad happening.  He started to become even more depressed and outraged the more bad stuff he saw. Everyday, there is no shortage of injustices for the media to report, and they make it a point to keep us upset and fearful, so that the drama and suspense keeps us coming back for more.  I finally had to tell him to shut it off and find something else to do with his time. He was getting too wrapped up in the drama and it was not doing him, our family or the world any good to dwell on all that negativity.

I am starting to feel that way with my autism newsfeeds. I am beginning to feel overwhelmed with all the negativity from all the bad things that can, do, or might happen. The drama that is always present, because there is always someone in the media somewhere that said something that was un-pc about autism. It's not that I think it's okay for people to say bad things about autism, but I can;t let myself get worked up every time someone disagrees with the way I see the world. There's simply too much good to be doing for me to do that. You know the saying "Some people look for fault like there is a prize for finding it"? That is how I am feeling about a lot of the things I'm seeing in the ASD community lately.  I have unliked pages and hidden quite a few. I won't argue. I will just simply redirect my attention.  This is what I need to do in order to maintain my own sense of wellness.

Saturday, July 21, 2012

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. :-)


Saturday, July 14, 2012

IEP Nightmare

Last night I had this dream about being at an IEP meeting for Bubby. I went to the school to drop something off and I ran into some of next year's staff for Bubby. School was just about to start in the dream. I started trying to chat with them about Bubby and they said "I hope you don't expect the same things as he got last year. This is 5th grade. It's not going to be a cart le blanche of services for him."  I didn't know how to respond.  I at first, thought that maybe it was just that person. But, I kept running into staff that would say the same things.  I finally got upset and yelled "He has an IEP! You can't just pick and choose what services he gets! It's a legally binding document!" To which they replied that they have called a new meeting to re-assess the IEP. I went to the meeting and they said that he no longer qualifies for services. I tried arguing and I got so upset. I couldn't figure out how they could do such a thing!  So, I pulled my last punch. I said "Fine! Then I guess I will have to home school him if you will not provide the proper care and services for him!" Then they started high fiving each other! I couldn't believe it! It was such a realistic feeling dream.  I left the school feeling overwhelmed as I have no idea how to home school. 

I'm guessing all this is symbolizing my jitters for the upcoming school year.  I was not even aware I was that nervous about it, but I must be.  I think it has to do with the older he gets, the less the teachers tend to go out of their way to aid him. I have no idea who his teacher is going to be next year. Usually, they have that per-determined for him, but not this year.  He is getting older and the structure of school changes with each year. I think that I get worried he is getting left behind. I also worry that I will have to home school and that is something I really don't know anything about or want to do. I don't like driving into town (read that as, I have anxiety issues about driving into town so I don't) and I worry that being at home with just me all day will be a not good place for him to be socially.

But, the good news is, it was just a dream! Hopefully, next year will be just fine!