05/5/12

Speaking Of Meltdowns II

Continued from Speaking Of Meltdowns I..

In the next two posts I am attempting to explore some of the challenges in the mind of an Aspie on a regular basis as well as during a meltdown/shutdown. It will be filtered through my own Aspie mind. Remember we are all different and some of us may not respond in the same way. It is important to find the common traits, and try to understand them, but also remember our triggers, and responses vary. We have all had our own unique life experiences to mold scripts, fears, likes, interests, etc…

Also, keep in mind that something that did not upset us the day before could be catastrophic the next.

Sometimes we can explain this sometimes we cannot. My personal experience with this is that something “suddenly” upsetting me is because my senses have been assaulted by multiple avenues, my mind feels fuzzy, and I am unable to think. An example, one day I can like popcorn and enjoy eating it. The next day the smell alone can send my head reeling, and cause me to be aggravated. It normally has to do with when my senses have been completely overwhelmed.

During these moments of intense sensory issues – a meltdown/shutdown can occur.

The sensory can remind me of social confusion which taps into triggers of past experiences. If my day has not been going well, or I feel someone’s “negative” vibes, my mind can go into negative scripts. Popcorn can have several negative associations not only sensory wise (getting stuck in my teeth, hurting my gums, getting burnt) I can remember times when I could only eat popcorn to survive. Either I did not have any money, or I could not force myself to eat anything else. There are situations growing up as well, my mom being fanatical about her cheese popcorn that smelled like rotten stink to me. This can open other memories and stories of my life.

What I have been working on these several months is scoping out positive memories instead.

It has been working, but it is a huge mind shift. It can throw me when I am too overwhelmed and have not had any down time. As you read on you will see the words overwhelmed, frustration and confusion a lot. Another major factor for meltdowns are those three things. There is a great frustration with not being able to communicate with others in a way that they understand. It is enhanced when you have a mind that is unaware that the other person does not understand. Another component can be when it feels like you are the one who has to put in all of the effort to try to understand them, and it feels like they are not trying to understand you it can cause exasperation – hopeless feelings.

There are elements of bewilderment when the other person has misunderstood you.

It is like a shock to the system. When you have been clear and direct, but the other person completely misses the semantics of your words it just doesn’t make sense. Don’t we all have the same dictionaries? What I have learned is that everyone is filtering their words through their own perspective. I may have learned this – I cannot remember this during the rise and fall of a meltdown/shutdown.

David and I miss each other’s meanings, and misinterpret each other’s words/actions often.

When I am in a state as I was the other night, my brain automatically goes into strict black-and-white thinking and looking for patterns. I believe the reason for this is that my mind is trying to get me balanced. I am seeking structure, and stability in the midst of what feels like complete chaos. Actually, I am not only seeking it, it can feel crucial that I get it to help me become grounded again. I tend to interrupt, and ask questions because if something seems illogical to me I cannot let it go.

I can get stuck on words or phrases.

If I am not hearing concrete, direct words, it can cause me to tailspin into another trigger path. I don’t want to, most of the time I don’t even know that I am doing it. I am still referring to meltdowns/shutdowns on a regular basis I do pretty well and if I am confused, I can ask. I lose my words and ability to capture words in a cohesive manner while in a meltdown/shutdown. I may repeat something over and over such as: “I cannot talk. I cannot talk.” I do not like being pressured into speaking about my emotions. I need to write them and process them. Since David talks out his emotions and issues, he throws words into the air speaking whatever comes to mind because that is how he processes.

To me this feels like I am physically being covered with words.

I am unsure what the emotions or meanings are behind the words, and this causes me to be overwhelmed with confusion. Because I do feel, see, and have multiple sensory attachments to words they can seem to be penetrating my body. I associate this to my synesthsia. I have more information about synesthesia on another post with several videos here. Though, I need to process and write what I am feeling if there is unresoveled tension, I cannot move forward until it is resolved.

I will loop and create faulty scenarios to try to calm my brain.

I can see David’s (others) point of view getting frustrated and wanting to just say whatever comes to mind, but I do not know how to filter those emotions or words. Saying other things aloud such as: “No I cannot say that” or “I can’t say it like that.” add to the frustrations and guilt I am already feeling. Even if it is not meant through negative intentions, those types of phrases feed into negative thoughts for me.

I now have feelings as if I need to be coddled, or I am a huge cause of frustration.

I want people to be able to speak freely, but yes, I do require clarity. I do not know how to remedy it. It makes me overwhelmed with sadness because I feel like such a burden. It builds up on my own frustrations of not being able to understand. I want to understand, I try to understand, but I cannot get my brain to make the connections. I am desperately wanting the connections to happen – I can feel a disconnect and it is infuriating. I don’t know how to understand “processing in the moment.”

My cognitive functions are already distorted.

It takes a lot to function on a daily basis with how my brain is processing, but when adding stress, anxiety, emotional/social confusion to the mix it can be “Messed up big time!” Some executive functions that include sequencing, inhibition, problem solving, and flexibility are severely delayed during the points leading up to meltdowns/shutdowns. After the meltdown/shutdown is already in full swing, these functions are basically useless. I cannot be reasoned with to some extent. It does not help that I can feel the emotions of frustration, anger, sadness, etc… from other people. It causes me to be confused because I cannot discern between what I am feeling and what they are feeling at all. I cannot think it puts me on defense and all I am doing is trying to protect myself.

Everything becomes jumble.

At that point, I just need to feel safe because I do not. I need a safe place to calm down. I need quiet. I need peace. Why do I say I need a safe place, because now my entire world is no longer safe. Words do not mean what I thought they did, places have unexpected noises, or feelings to them that seem sudden – people are no longer acting the way they normally do. It is like I just stepped into a world of fun-house mirrors. Everything has become distorted and looks scary to me. (I do not like fun-house mirrors sorry if you do, but you understand the distortion, right?)

These mirrors do not only distort images.

They distort sounds, meanings, and emotions. When people are upset or sad they begin to act differently and this takes adjusting for a person like myself. I see it in my kids too. If someone is acting different, such as their Grammy they begin to act out. They will all start stimming in their own way and continue to interrupt, Daniel usually makes very loud noises (humming, strange sounds), or will bang things on the floor. He will do things that he knows bothers us very much while we are trying to talk until he knows that everything is ok, or he understands why she is acting different.

In many cases, I have no idea why someone is upset.

I only feel their energy and I NEED to know what the problem is. I have my own ways of “acting out”, or stimming when I feel something and the person is not telling me what is going on. I tend to get very angry and start to clean frantically. My anger can seem insensitive – I am not insensitive I need clear and direct. Quite honestly, it does not occur to me to ask. If I am upset, I normally say something because I tend to say whatever I am thinking. It is hard to remember that others do not do this. I can also go into meltdown/shutdown mode because it is too much for me to handle the feelings that have no explanation.

My mind cannot handle a multitude of emotions, sensory, and flustery words.

Things that upset me do not upset others and vice versa. I cannot be expected to read a person’s emotions properly when it takes me time to read my own. I am not good with body language. It does not matter how many things I read, I do not get it. It is not for lack of trying. When I do not understand the other person’s form of communication it can contribute to a lot of distorted views of their actions/words. On an average day I am not too bad at it, eventually I can figure things out, but during a meltdown/shutdown it is practically impossible.

That is why I need straightforward words, and no “fluff talk” or “hidden meaning” talk.

Great quicky resource for synesthesia.

Synesthesia: A film by Jonathan Fowler

Continued Speaking Of Meltdowns III…

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05/4/12

Speaking Of Meltdowns I

I am trying very hard to keep this post direct, and clear sharing the many resources that helped me. I had to analyze and process many years of information that had been tucked away in my mind. I am using the recent events between David and myself, but much of this applies to numerous social encounters and relationships that I have had. I need to first clarify that my entire life I had no idea that others experienced my meltdowns/shutdowns. I watched my mother have them – as I got older I assumed that I had learned the behavior and that it was controllable. When they would happen, after me using all of my willpower trying to control them, I would spiral into deep depression and self-condemnation. I assumed it was based on my emotional dysfunctions. Many times this brought me great confusion, and would trigger negative self-talk.

“Why couldn’t I just be alright and not act ‘all crazy’?”

I have gone through this line of thinking since a child. It is hard-wired in my brain and I struggled deeply to understand myself. It is crucial that I understand myself in order to accept my limitations and be able to see and accept my strengths. It is very important to me that I stay intuitive with my children. I do believe that understanding myself helps me understand my children and know how to be a better mother. When I was faced with Daniel’s meltdowns, starting while he was an infant, I wasn’t sure what was going on. In my gut I felt like something was wrong. It did not feel like a regular child tantrum. I did not respond to them like they were tantrums either. Something inside me understood that he was not doing it on purpose. It was still confusing, draining, and would exhaust me. I never thought of myself as sharing in this same type of behavior. In my eyes he was a child and that meant he lacked the control I had as an adult.

The mindset that an adult Aspie has full control over their meltdowns is erroneous.

While I do have the ability to stop them sooner at times, work through them in a more controlled way, and possibly be able to communicate the reasons later, they are not always controllable. Understanding that has given me great freedom. Removing the shackles of guilt has allowed me to explore ways to help myself. It is a shift in thinking, and part of the acceptance of myself. I have accepted my looping process, I have accepted my anxiety issues, I have accepted my social confusion, and with all the acceptance has come progress. It has helped me to learn with a clear mind becoming much more capable of handling my situations.

The embrace of limitations has brought a boundless amount of healing for me.

Stripping off negative thinking about my meltdowns/shutdowns has removed condemnation, and that makes life a whole lot easier. I can’t function when I feel like a horrible person, or like I have done something wrong. If you are not aware of the difference between meltdown and shutdown here are several resources I recommend. Some of these resources are geared toward children, but they do apply for adults as well. Sometimes meltdowns/shutdowns can be triggered by something entirely different than what is being expressed during the meltdown.

Shutdown: A Specific Type of Meltdown

Aspergers Meltdowns – Part 1 of 2 (video)

Aspergers Meltdowns – Part 2 of 2 (video)

Aspergers Meltdowns vs. Temper Tantrums (video)

Aspergers Meltdowns versus Temper Tantrums (post)

MY meltdown had been building up for over eight years.

I did have a few small eruptions throughout these years, but ended up stuffing them down because I was too confused or unable to articulate what was bothering me. There was another huge factor – my life’s focus was on Daniel and trying to help him. I felt like I HAD to control and ignore my emotions for the sake of all of my children. I also was trying to keep life as stress-free as possible for David. He did not ask me to, I just felt like that was what I needed to do to keep a calm house.

Since David and I have been together, it has been continual change.

I have not had any down time to deal with all of the instability in my life. I have been a mess for years trying to establish order and stability. David does not have a need for order, and stability the way that I do. He does not get tripped up or stuck by details like I do. For instance, having a house completely unpacked and everything in its proper place is not that important to him, to me it can cause a series of emotional break-downs. Once things would start to feel settled then, something would happen and shake everything up. Another move, (this is our sixth house) a new job, a different church, etc…During these years I had to be alright for everyone else. This is a lifelong role that I have had so it was an automatic process. I have completely denied myself to ensure that everyone else was fine. I think that it is part learned and part my personality that seeks to help everyone.

In our time of marriage we have moved across the country twice.

The first move I was completely isolated from family, and ended up having no friends. I only had David and the kids. We went through traumatic church/ministry issues, God issues, family issues, waking into the world of autism, and many, many things. I am surprised it took me this long to erupt. My frustrations and anger have been boiling for years because I have tried to express myself in multiple ways. I thought I was making myself very clear, but David forgets things and didn’t understand the severity of some of the things I was sharing.

There is no fault, or finger pointing here.

We both have our issues, and we both have had a lot going on in our lives dealing with stress differently. I am used to holding all of my stuff in to try to make the other person happy. In one way I molded myself into a very similar image to him so that I could be empathetic and stay supportive. I got exhausted trying to explain myself, and having the conversations spin into different directions. I spoke up on certain issues, but many times, I gave up and submitted to whatever he was saying.

I became too tired to do anything else, but shutdown.

He never asked this of me. He has never forcibly done this. I was seeking calm and quiet. There is a lot packed into all of this, but frankly, I was desperately seeking stability. I shutdown parts of myself to cope. Again, there are many factors that play into this I am not saying that David is the sole reason. He is not and he has tried his best to be supportive as best he can. We thought we understood each other, but in reality we have both been speaking foreign languages to each other.

A great quick read to insert here would be “Misinterpreting emotional cues goes both ways!”

There are many changes going on here sending me into a tailspin of instability. David has started a new job that has brought him into many transitions causing anxieties and added tension. I am moving into new areas and trying to transition into the move that is supposed to happen in several months. One of our goals with this move is to transition me into being fully self-sufficient. I have lost a lot of my skills that I had while I was in the the world on my own. I need to regain them. That lingers anxiety in my mind as well. In addition, our relationship has changed on multiple levels in the past year.

I have gotten exasperated repeatedly over the years with David’s way of communication.

He is a person who talks out everything. I do not do this, and I can get overwhelmed with having to “discuss” everything. The night of my meltdown, I had been on the verge of explosion all day. I could feel the tension from David, and so could the kids. I was having my own issues because we were encountering a new social situation the next day. Also, I had been talking on the phone dealing with Daniel’s reevaluation schedule. As well as not getting enough sleep for days. Plus, the kids had their own meltdown issues that I was trying to stop from erupting all day.

I felt accosted by negative energy and couldn’t take it.

Long story short, we both got angry and frustration levels hit the roof. We have never had an episode like this, though I am sure it was still quite tame compared to others. In the past, I would shutdown, and internalize with self-condemning talk. This whole thing was very surprising as well because David and I have not had fights throughout our marriage. This was our first fight in our, over 8 years together. I read “How the rules of relationships need to change to accommodate the needs of meltdown-prone adults” recently and it made a lot of sense to me.

Throughout our marriage, we have always had “other” enemies.

It was not until this summer that I began to see just how far I had spiraled into a completely different person in order survive my life. There were times this summer when I felt so helpless that I could not talk, or eat. This brings me to how much David did not (does not at times) understand how exasperating it is for me to have to “talk things out.” One night over the summer, after three hours of non-stop talking, I couldn’t take it anymore, and I started to lose it. I needed quiet, I had already shutdown, I told him that I could not talk anymore, but he needed to talk. I asked him to please just stop. He didn’t understand my behavior, or the extent of my frustration and exhaustion. I scared myself because I started having thoughts of self-harm. I had not had them in years.

I was able to snap out of it, but it was after I had a minor meltdown.

This last meltdown had taken over in a way that I haven’t done since my last ex-husband. That is a long story, but it was well over 10 years ago. Throughout my life I have had meltdowns that felt like I was out of my body watching my physical body being utterly helpless to stop what I was doing. I had no control. (This brought about many fears during my lifetime that’s another whole post.) This night I didn’t even remember things that I had done. There is one thing that always causes me to shutdown or erupt and that is when someone will not stop talking, or leave me alone when I ask (tell) them to. It is triggered to heights when I believe that the person is well-aware of this. I think they are doing it on purpose. I can’t process. I cannot think. It makes it worse when words like always and never are used because it makes my mind start to race into a movie – scene by scene for every year I have known them.

I comb over all of my actions, words, and the other person’s too.

I begin pointing out things that prove that it could not be true that I “never” do this or I “always” do that. Which can escalate into other arguments and frustrations for the other person. This particular night I could not even do that until later, my brain filled with black inside, and I went blank. Unbeknownst to me I put my hands over my ears, pacing back and forth in the living room yelling, “Stop it!” over and over again. (The kids were in bed in case anyone was wondering where they were at.)

I do not remember doing that.

I do vaguely remember thinking “Stop talking, please God make him stop talking.” It was during that when the words about “being a seven-year old” were thrown into the air. My mind was hazy, dizzy, and consumed with just needing quiet. At that point, I screamed something not very nice. I have never, ever done that to him before. Part of it came from years of feeling like I have not been heard, and that all of the things I have done were nonexistent in a moment. Those words were also a trigger for experiences with other people in my life. I was consumed with confusion as well because David had never talked to me that way and I didn’t understand this sudden change.

When I erupted I was not in a right frame of mind.

David went upstairs and I went into my bathroom. I started to beat my head with my hands, clawed at my arms, pinched, and dug at my flesh, while my head spun in anger. Then, I began to hyperventilate I think it helped me grab a moment of reality causing me to be able to stop myself for a second. I was able to think clearly, and tell myself that I had to go talk to David. I knew that I had to stop my behavior. I went upstairs still fuming, controlling myself as much as possible. I ended up breaking down in sobs because I just couldn’t explain things to him in terms that he understood. I already have such a hard time understanding him when it comes to emotional type of things. I know that it can be incredibly frustrating for him to talk to and understand me as well. We have very different ways of communicating. (I want to add that I have shared this post with David.)

He describes our different ways of communication as him being horizontal and me being vertical.

These are simple images of how I see it – sound waves seem appropriate.

David

To be continued Speaking Of Meltdowns II…

Additional resources.

The Aspie Meltdown – An Insiders Point of View – Part 1

The Aspie Meltdown – An Insiders Point of View – Part 2

The Adult Aspie Meltdown

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05/2/12

Jealous Much…Me?

I am doing a mind dump. I have had too many surprises in the last few days. Hopefully, writing this will help me be able to categorize, prioritize, and start being productive instead of spinning. My iPhone is on the way – I go through spurts of being really excited and then into a complete freak out because I never want anyone to get hold of me. Why? I-don’t-know. It makes me feel like I have spies all the time when I have a phone. (Much like the feel when I am on fb and feel like the pictures can see what I am doing!) Ha ha ha I don’t know how to explain it. I can be strange sometimes. Said iPhone is a 3G so I am already a little prejudice against it. I know, I know I shouldn’t be… I will love it and calm down once the anticipation is over.

The plans for our place of stay have fallen through for our move.

We had initially planned to stay with my grandmother for a short time to look for a house. She has now decided to sell her house and move out here, and suddenly has no room. Fine. I understand completely I am not upset. However, she will not be able to sell that house until she makes it look like someone from HGTV just redid it. She does not have a realtor – she is 78 years old and trying to sell it on her own. The basement is Amityvilleisk hence, my lack of upset staying there. Now I have to locate a home before moving, which is a little stressful.

This means that I am going to be on the phone for the next few months.

Causing me additional stress of asking my aunt to look at houses for me. She is so busy it feels like an intrusion. (To me she did not say that.) She also may not be able to and that freaks me out because I really need someone to walk in the house and tell me if it feels icky! Some houses feel icky and claustrophobic. She understands what I am talking about when I say:, “Tell me if the house feels icky!” I cannot live in a house that feels like a swarm of evil spirits lurk about. There are many of those kinds of houses in my hometown. Not that I am concerned with evil spirits. They do not bother me I just do not want to “feel” them.

Daniel’s re-evaluation is at the end of May.

Everything was all set in place, and they changed some things. It’s not a big deal just sudden change. I had to go through a different facility because of cost. I do not know these people at all and I am not looking forward to my three-hour interview about my son. Since, I did send them a mile high of paper work that should answer all of their questions. That is my anxiety talking – I fully understand their process and why they need to interview me alone. It is just so draining. Plus, they have changed the schedule on me! All is well just sudden change.

The big one! David’s new job is flying him out to San Francisco.

We thought we had two weeks to prepare, but they decided that it is going to be next week. While I am very excited for him, I think all of the things that are happening for him are great, it was sudden. It is not a big deal – I started preparing the kids already. It is the suddenness of it. AND I am SO jealous! He is going to be staying next to Google! What? It’s so unfair. I would love to get a little sneaky peek around them parts. I am not going to divulge any more information, but man I would like to have his job some days.

I really want to visit San Francisco too.

I have never been there. David has not either even though he is from CA. (Originally. His family moved a lot and then they went back when he was a teenager. I am getting sidetracked with details that really do not matter. :-/ I will stop.) He has been trying to talk me into moving to San Francisco for years. I will not go into that. He is very excited. Yea for him! I do mean that, I am not being sarcastic. I am still a bit jealous, but he isn’t going to be doing much site seeing, and will be meeting a lot of people. That does not sound fun to me. Hee hee

Alright I think that is it for now.

It feels much better writing this stuff out. It feels a bit overwhelming, but all will be fine. I do not like the unsure feeling of the move though. It is now contingent upon finding a house first and that carries a lingering anxious feeling. It will work out – things always work out. Nope there is more. I have not started packing or anything that is freaking me out a little bit. Without a place to go, it feels pointless. Since I need everything in the house and there is absolutely nothing I could possibly pack ahead of time because I may need it at any moment. I feel that it is in my best interest not to pack. Ha!

I haven’t been able to make any lists either.

My emotions, head spins, and shutdowns have caused me to be unable to exert any energy on that. I have had to use what I do have for the kid’s school, and socializing. I am so exhausted. I get frustrated when I am like this. I have so much to do, but my brain feels scrambled up and unable to know where or how to start. Blah! All of these things feel up in the air and the anticipation causes chaos in my thoughts. Seriously, I think I feel better now. I am going to go focus on the house some today. While brewing in my jealously because it helps keep focus off all of the things I have to do.

I’m kidding! My head is feeling much better already. (For the moment.)

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04/30/12

Angel (@MindRetrofit) to “I Wish I didn’t have Asperger’s” #AutismPositivity2012 Flash Blog

The driving force behind this post is here please go have a look at the many voices who shed light on Autism Positivity.

To “I Wish I Didn’t Have Aspergers”

My heart calls out to you my friend – I call you friend because I already feel a connection. The search words speak volumes, and had I been diagnosed years ago I may have typed the very same words myself.

Only a few years ago I was praying for my son to be healed from autism. It was a confusing, lonely, and desperate time. The tears well up in my eyes right now because the most painful part was that I had not seen the amazing beauty that was flowing through my child’s eyes. He has taught me much more about life than any philosopher, or religious figure. He played a key role in helping me accept myself.

If it was not for him I may still be condemning myself for not being “normal.” Attacking myself in droves seeking answers to “Just fix my brain!” My son’s autism has brought healing that I am fairly certain would not have happened had our eyes never been opened to autism.

I am not denying the challenges. We have them and they are great. We share in sensory issues, social issues, anxiety issues, and eating issues to mention a few. All of those things can be very difficult and hard to handle on some days, but the positives can outweigh the negatives. My son is gifted with numbers; he has an amazing engineering, and musical mind. He sees things with a unique and intriguing perspective. He loves intensely – not necessarily people. He has passion and is hilariously witty!

When I think of you “I Wish I Didn’t Have Aspergers” I wonder about your talents. I would love to hear about your special interests and see where they could take you. My own special interests connect to many things. I love and have a great respect for words. I see connections through science and spirituality flowing into colors and numbers, creating poetry and songs. I hear the silence of the moon that reaches down to all of us who look upon it and share in its loveliness.

I say to you that you are not alone! We share in connection with the sky. If you feel alone, seek out those of us who share in your interests. Seek out those who share the reality of our pains from past and present. Seek out those who are older and have wisdom. Seek out those who are younger and can challenge you. Do not seek to wish that you would no longer be who you are.

There are days when it can seem bleak regarding autism. It feels like no one understands. That is not true. Many of us are sharing our voices and we are sharing them for ourselves, for parents and caregivers who do not know where to turn, and for people like you. We know the feeling even if some of us have never wished our Asperger’s to go, we empathize with the struggle to live in this world surrounded while drenched in loneliness and misunderstandings. We may not have wished it away because we didn’t know what it was, but possibly we did wish to fit in and to be/feel “normal.”

Personally, discovering a name for why I feel and do the things I do has been a relief, and a blessing. The way I think gives me great insight to my children. Each day I accept more and more of myself the good and the bad – with the knowledge of my challenges I am able to move forward. With the allowance of seeking my special interests I am healing from past hurts, and the all too confusing life ride that I have been on.

The future looks bright – I believe that one-day autism will be fully accepted and acknowledged into our culture. I do not know when, but the more we know the brighter it looks. The more we understand the more we can develop resources and attitudes to help each other. Also, leading into better helps for those who have different kinds of challenges in the autism community.

The more of us who utilize the resources available and change our minds to accept ourselves the greater the chances are. I confess I have my days when I cry and wish that my brain would just stop what it is doing, but I then go and read my friends blogs who understand my pain. I read the resources that explain my brain. I write poetry or stories to spill out emotions I do not understand. It brings healing, and it reminds me that I am not alone.

I look at my son and remember not long ago he couldn’t have a conversation with his brother and sister. He now plays with them on a daily basis. He is telling jokes. It wasn’t even crossing my mind that he would tell jokes two years ago. There is hope. Many of us share in similar pains – there are ways to find help in times of desperation. If I were to be able to speak to you directly, I would say:

“You are unique and have so much to contribute through your Asperger’s mind. You have something special that needs to be shared with the world. You matter and are who you are supposed to be. Find people to help you see that, and build you up in it. You do not need many encourages, only ‘real’ ones. Find a place that accepts you and where you can learn how to gain self-awareness and self-acceptance. Do not deny who you are – embrace it. Once you embrace your challenges and your gifts your life will change. You can do it. You are not alone. You are fully capable. Look in the places of hope, not the places of doubt or self-denial. Your voice matters too. Share it! And when the down times come do not fall for the voices that tell you that none of this is true. Go after the autism acceptance community with a vengeance and determination to remember who you are. We will all be here waiting to share and embrace you! Happiness is the understanding that you are not a disease, or defective – you are a remarkable individual who can achieve great things with the right tools, resources, and encouragement. Search upon those things.”

Autism Positivity

Our positive outlook begins inward. A good thing about our autism is that in our weaknesses we see with much more clarity just how awesome our strengths are. What may be construed as a weakness can be manifested into great strengths. They may hurt deeply, feel overwhelming, cause us to be immobile at times, but if we look at them as a way to grow and challenge ourselves, I think we can find the positives.

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04/29/12

An #AutismPositivity2012 Flash Blog Event

To “I Wish I Didn’t Have Aspergers”

A couple of weeks ago, someone somewhere googled “I Wish I Didn’t Have Aspergers”. The phrase popped up in a blogging dashboard and struck the blogger as being particularly sad. She wished she could have answered.

We don’t know who it was. We don’t know where he/she lives. We have no idea if he/she found what he/she was looking for in that search.

We do know that search directed that person to a blog. We do know the searcher clicked on it in an attempt to find what they needed. And we do know enough about the challenges of autism to know that person is likely not alone in that sentiment.

So, we got to thinking. What would we say to that person? What if it was a kid, desperately trying to make it through tough years of intolerance and ignorance? What if it were a person who might never stumble across the amazing voices speaking for autism acceptance? What if that person thought himself/herself all alone? What would we say about the present? What would we say about the future? What would we say about happiness? And hope?

Each of us in the autism community –- self-advocates, parent advocates, friends and family, teachers, health professionals—we would all have different messages for #IWishIDidn’tHaveAspergers. But likely we would all try to send the message that there is a brighter future and that friendship and support are out there.

We are asking every blogger in the autism community to write a message of positivity to #IWishIDidntHaveAspergers. So that next time that individual (or another) types that sad statement into Google, he or she will find what they need – support, wisdom, and messages of hope from those who understand.

And – for those of you who do not blog but wish to join in – please post your positivity message to http://autismpositivity.wordpress.com/ or send us an email at autismpositivity@gmail.com

Please join with us on the last day of Autism Awareness/Acceptance Month – April 30^th – in a flash blog of autism positivity.

To participate:

Publish your post on April 30^th in the following title format: “[Your Blog] to ‘I Wish I Didn’t Have Aspergers: #AutismPositivity2012”.
Share your post on Twitter and Facebook, using that hashtag.
Add your link to the Autism Positivity website and grab the badge:
Share/reblog this message to your blog, page, etc.

This Autism positivity Flash Blog Event is the brainchild of Thinking About Perspectives, a group of bloggers committed to increasing autism awareness and acceptance via open and respectful dialogue. We are: 30 Days of Autism, Outrunning the Storm, The Third Glance, Aspie Kid, Flappiness Is, Quirky and Laughing, Life on the Spectrum, Fairy Tale Forgotten, The Aspie Side of Life, and Inner Aspie.

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04/28/12

Um…Not Gonna Do It

I had planned on finishing another post and putting it up, but no. I am coming out of a shutdown and feel like it is not a wise decision to share what feels very exposing. Not today anyway. I think I will wait until after Monday. I had too much fun with my mom and the kids today at the beach. I was feeling down, and my heart has been feeling achy. Some of that has to do with things that I have read. It is a mix of discovering answers, realizing that there are certain things that are definitely not going to change about me, and it is somewhat hard to adjust to. It is not a negative it is adjustment. I have another new book Asperger’s from the Inside Out by Michael John Carley. It looks like a very good read. An Aspie friend of mine read it and she liked it very much.

I am looking forward to reading it.

I am sure it will wake some things in me and bring about new discoveries. In the book 22 Things a Woman with Asperger’s Syndrome Wants Her Partner to Know, I am getting ready to start reading chapter 8 “She only needs one friend…and the winner is, you!” The title alone helps me. I am most certainly going to go through this book in some detail when I am finished and share my personal experiences and how this has helped me. I wish I could shout this from the top of mountains, but since I cannot I will say it here “OMG! GO GET THIS BOOK!” Aspie girls if you can get your partner to read this I think it would be very beneficial. I also recommend reading it yourself. As a matter-of-fact I think parents would benefit as well and could find it a useful tool to help their Aspie girls find the right type of person to date – if they feel like dating.

It has given me so much clarity.

Several of the things mentioned in the book have been deemed as negative in my life. It made me feel such guilt and at times wishing that I were just “normal.” The confirmation by another person that it is not just me, and that they are not negatives is life changing. I am not making things up, or completely absurd – it’s my brain! Oh, thank you God! It still makes me kind of sad though because I want so much to make others happy, but I realize I have to walk in my own skin. If I am going to truly accept myself, I have to make changes that will help me. It confirms that the directions that I am taking in my life are the right ones. I do understand my needs more than I thought I did. I have gained more of my voice, and am able to walk a little more sturdy in my own shoes. Am I rambling? Am I being evasive? Sorry.

So yeah, the book rocks.

I can apply many things in this book to friendships as well because I see numerous parallels. I have had few friends and I am not good at keeping them. The ones that I still have in my “real” life are NT’s who have not given up on me. I do not have many, but I have a few who come after me when I have been silent for too long. (Even though they are mostly online now I have had them in the “real” world as friends. ) They make sure I know that they are still there and they check on me, try to encourage me, and remind me that they love me. I get pumped up and excited when I am encouraging them though. I end up talking to them about all of the things they are doing or want to do and my enthusiasm tends to get them super stoked and I see them start to step out a bit more. I love that!

It is über awesome to see people thrive in their gifts!

I cannot tell you how happy that makes me. People sometimes don’t believe me, but it is true. That is who I am. I got distracted thinking about my one friend who has started a cake/candy business. I am all smiles now and forgot what I was going to write. Um…Oh, yes, yes. I remember I got kind of sad the other day reading this post Devoted but Dateless. It put into perspective the challenges that single mom’s with special needs children feel. I felt sad for her not in a pity way she is not looking for that, it is the sadness that so many people need companionship.

We all need it and so few are willing to do the work for it.

It made me think about how people can find those of us with special needs and our children to be too much work. That can get me onto a whole series of rants that I am not going to go into. However, I will say I have my own feelings of being a burden and too much work for people so I think it taps into those emotions. Hence, the reason I am not going to write about it. I am not going to go off on a tangent. Speaking of relationships/companionship, I think this connects to my train of thought Pity, Respect, and the We/She Dynamic. At least it did in my mind. HA! I also read these and thought they were very good.

Theory of Mind and Mindfulness

Body Images

I have Aspergers – Part 1: Who I am

I have Aspergers – Part 2: Getting the diagnosis

I have Aspergers – Part 3: Life after an autism diagnosis

Back to Rudy Simone’s book “22 Things.”

I am trailing full circle in my thoughts. I REALLY like how the book is clear, direct, and short in each chapter. No fluff talk! And how she shares a short blurb “Partner’s Words” at the end of each chapter. I think it is so wonderful to read positive words from partners. I loved this one the best so far.

“If you’ve dated mainly NT women in the past, you may have some habits that need to be unlearned. With NT women you have to think of a second layer underneath what they’re talking about and thinking, and do a little ‘dodge and weave.’ An AS woman is merely blunt and there’s less tact involved. Don’t look for the subtext or the game. It isn’t there.”

~ Rudy Simone’s book 22 Things a Woman with Asperger’s Syndrome Wants Her Partner to Know

YES! This helps me to understand some girls who are friends as well. (No wonder they are shocked by some of the things I say. Lol!)

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04/26/12

Going For A Top Ten List

I feel the need to keep me light today, but I feel like I need to write. My vulnerability is trying to take hold of me and cause me to feel fear. I am doing a frontal attack! With the hope of helping myself, I am writing a list of things that have caused people to love me, leave me, enjoy me, or can’t stand me! Why? Because even though some people may not like these things, it is me. I do know that some people love these things about me and I need to remind myself that the way I think is a good thing. It also helps me see that I tend to have a lot of fun in life. Even when I am working through emotional things, or feeling exposed.

Top ten things that have caused people to love me, leave me, enjoy me, or can’t stand me!

10. Connecting details as a person talks.

For instance, say someone mentions the movie Se7en. While speaking to me about the deep philosophical truths that ring through the movie, I go down several paths. Here we go — Brad Pitt, discussing his entire film history and my personal feelings toward his acting. I find it to feel all the same except in 12 Monkey’s which happens to be a favorite role to date, second running Fight Club, third running Meet Joe Black. (There are other movies as well, but these roles I like him best I believe.)

Still I have a hard time getting past the commonality of his acting throughout each role. I am not saying he is good or bad, only the same in comparison to the roles and acting of Kevin Spacey. When looking at the two I see character embodiment more so in Kevin Spacey. This attracts me to him and his movies more so than Brad Pitt. Morgan Freemon I find feels the same in his characters as well, but I enjoy him very much on the Science Channel Through the Wormhole. Again, I am not saying anyone is superior or is insufficient in their acting. My preference is Kevin Spacey.

This leads into the little amount I know about their personal lives. I was very confused by Brad Pitt’s choice of women throughout the years — this topic will definitely come up if one mentions the movie Se7en. Why, because he dated Gwyneth Paltrow. It pops open the questions. I will not go into all of my detailed thinking, but will say I am an Angelina Jolie fan because she is so intriguing and has a very interesting life history. I am not drawn to all of her movies, but I appreciate the more vulnerable roles she has played one being Gia. This then, leading into a conversation about Kevin Spacey being so private, I just enjoy his life style.

I obviously kept this short, but you can image how someone could get frustrated or excited talking to me just by bringing up a simple movie. Eventually, I would lead back into the philosophical truths — expelling into another round of wonders and connections linking poetry, songs, philosophers, spirituality, and whatever else that popped into my head. Of course, ending in song and dance, if I had not already been doing that throughout the conversation. (To add a little more detail, I would have gone into other ventures by connecting other actors in different movies with them such as Anthony Hopkins, as well as music since Gwyneth is married to Chris Martin of Cold Play, who reminds me of the pastor at the positive church we had been going to… I’ll stop now.)

9. Making up random silly lyrics to the tune of songs.

Like the time a radio guy who was doing his show at a place a of business that I worked at, was very rude to me and accused me of hanging up on him when his phone had actually been connected to his fax somehow. Every time I picked up the phone, I heard the sound of a loud fax machine in my ear screeching, so I hung up. He did not apologize after he discovered that I am NOT a liar, or a DUMB girl. So I made up this song to “Hot Blooded – Foreigner”

Mike Boyle yelled at me,

he’s got a temper of 103,

he tried to make cry can’t you see,

He’s hot tempered, hot tempered

Um….yeah, those types of things. I had a whole song, but I cannot remember it all now. I do this all the time it makes me laugh. However, it can annoy my fellow humans.

8. Separating my food so that it does not touch and eating one thing at a time.

One must eat the least favored first. Let me clarify that I do not do with with all foods, it is contingent on look, taste, texture, and smell. As well as how they will look, feel, and taste if mixed together. (Telling people to stop eating so loudly will go under this one.)

7. Saying exactly what I am thinking with no explanation.

This could be things like in the middle of a conversation about global warming I clap and jump up and down while saying: “I love the way the iPad screen looks when it is shiny and clean.” I am listening to the other person, really I am. I see no need for an explanation because the statement is clear, right?

6. Doing what I call the “spastic butt dance.”

I tend to do this anywhere or when someone is trying to tell me something serious. When the urge comes to do a spastic butt dance one has no control. Oh, and add clapping, jumping up and down, doing ballet spins, and laughing loudly. Yikes!

5. Mimicking hip-hop girl’s dances or Hispanic salsa overemphasized hip action.

This can kind of get on people’s nerves. Do you see a common theme? I am an out-of-control silly dancer and cannot seem to keep my moves in check. I will say that despite people’s frustrations with my uncontrollable moves they still laugh. However, it can get annoying with me asking; “Do you like my moves?” repeatedly. David came up with a statement I cannot remember where it came from, but I think he started it about the third year of our marriage after I asked for the thousandth time he said: “Yes, and we are all very impressed.”

4. Acting like a cat.

That seems to bother people.

3. Saying things like:

Oh, so you do like me, good to know.” Or “Oh, so you don’t like me, good to know.” and walking away. The proper etiquette is to pretend that you do not like the person when you do, and to pretend that you do like the person when you don’t. I will apply in my number three this as well. People do not like it when you say things like: “OH, I like you!” or “I DO NOT like you at all!” Especially, when you are in your early to late 30′s.

Reminder: Do not say what you are feeling and pretend as if you feel the opposite. Good to know, I will not remember and I can pretty much guarantee that I will not pretend anything. If I like you I like you, if I don’t I don’t it is usually nothing personal it has to do with personality compatibility. I hope I am not coming across as rude — I really enjoy all types of people. There are just a few that do not work well with my personality and vice versa. My issue is that I do not know how to “pretend” being compatible — other people seem to be able to do this.

2. Staring at someone with no expression.

I have been able to send people reeling with this one. Not even on purpose! I admit I have used it to my advantage on occasions. My way of getting back at people for being mean to me. Shh! Then, there are other times when I think my expression is very clear on my face, but no one knows. Oh, well.

1. Asking people a million questions.

Making people feel like they should be a walking web browser or Evi. I waited all my life for Evi. My mom got so frustrated with me as a child with my constant questions and connections. Her token answer became: “Go look it up in the Encyclopedia.” Also add “dictionary”, and “We’ll go to the library so you can get some books.” We were frequent library groupies it was our hang out when we moved back to the states when I was little. It was one of our entertainments when she became a single parent. It didn’t cost anything, and I wasn’t allowed to talk much, (like that stopped me) but it gave mom a short break. It was a marvelous time for the both of us — it was something we both had in common and enjoyed. In defense of my mom, I am a tenacious question asker.

Well that is it. I have many more, but I think I did well at keeping it to 10. Yea, me! Feeling better already.

Side Note: (added 5/1/2012) It did not occur to me to explain why I chose Evi over Siri until just a moment ago. Frankly, there is only one reason – I like saying “Evi” in my head it sounds pretty. Siri does not. Sorry Siri.

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04/25/12

A Bit Of My Meltdown History

I used to be a huge Smashing Pumpkins fan, I guess I still am I just have not listened to much of their music in a long time. Back in the day, I had frequent explosive meltdowns. Their music helped me to scream, sing, shout, and dance to get some of my “rageness” out. One of their songs that I had a deep kinship with was Bullet with Butterfly Wings. Part of the lyrics are “Despite all my rage I am still just a rat in a cage“. (It’s a bit hard and angry if you have not heard it before, you have been warned.)

I would hold in all of my pain, confusion, anxiety, fears, and desperation until I exploded. I now understand that many other factors contributed to this as well. My sensory issues, lack of sleep, lack of food, people in my life constantly being unpredictable, and/or messing with my routines on purpose. My rages were birthed from desperately longing for peace and calm. This rage was normally directed inwardly and promoted mental self-attacks and/ or self-harm. Part of the reason for inward destructive behavior had to do with my inability to describe and explain what was wrong.

I could not gather my thoughts.

I did not understand my emotions. I had no way of explaining to someone why I was upset. I was unable to express myself clearly. When I did attempt to explain myself I was not heard. I was constantly told that I was being childish, overreacting, or somehow what I was feeling did not matter compared to what the other person was feeling. Not only that I was told things like I was just being jealous, I was too insecure, and/or I was too needy.

I felt trapped by my own words. If I used them it caused people frustration, if I didn’t use them people got angry/hurt and read me wrong. Many times all I needed was a simple, honest, and direct explanation. If I do not get that, it feels like the person is hiding something from me or deliberately trying to deceive me. It gets my Sherlock mind going and I start evaluating every single detail, combing over words, information, actions, connecting this and that until I come to a conclusion.

My conclusions were correct many times, but I was convinced otherwise.

This disconnect of knowing something is correct in my psyche and being convinced that what I know is wrong, caused tremendous meltdowns. I have not always been correct in my assumptions, but I was correct about them not being forthright and completely honest in my way of thinking. To them they saw no problems with their white lies, or “keeping” certain things from me. But I knew, I could feel it. I could tell that their words did not match or their “fluff” words made no sense to me.

I hate fluff words! The silly dance of flattery, mixed with digs, or trying to read between the meanings to know that they were “correcting” me in a polite way caused me many upsets. It would cast me into a million questions and cause everyone to get frustrated. It caused me even more frustration because after hours of finally getting to the root, I found it plain idiotic to waste so much time on nonsense when it could have been all cleared up within minutes with honesty and directness.

I would try to control the bottled up emotions for as long as possible.

Eventually they would manifest, through tears, violent rampages on things in the house, or myself, sometimes the person if they pushed my limits or were violent toward me. Something would burst inside my brain and words I had no control over spewed out of my mouth, anger poured out from all the confusion. Fear and the feeling of being attacked caused me to go into self-preservation mode. After the meltdown settled, which usually consisted of me being beyond exhausted, feeling like I had been in a wrestling match with Rowdy Roddy Piper, I would cry. The consuming feelings of guilt and shame took over and every time I would vow never do that again. I had guilt for being destructive with objects, or with my words.

I felt shame for saying things that I never meant, or for harming myself in some way. I was a self-harmer starting from childhood. I would shutdown and lose my words when I was upset, then I would act out and infuriate my mom. She had a terrible temper — it calmed in later years, but I was afraid to talk to her some days. I know that some of this was my misguided perceptions of her words. I had that mixed with her temper that I was constantly trying to stop from erupting. She too was controlling her meltdowns in the outside world — home was a safe place to erupt. Not that it was right, it only now makes sense because I understand all of her stress and anxieties she had.

I am jumping ahead now.

I did not learn how to control them other than hide them. I learned to hold them in until I could find a safe place to let them out by myself. I ached to stop these meltdowns. I thought that by becoming a Christian it would help me love so much that I would no longer have meltdowns. This goes back to my initial prayers of begging God to fix my brain. That led into additional layers of unnecessary guilt/shame for about 14 years.

My thoughts caused me to feel like not only was I failing at being a “nice” human being, I was also failing at being a “loving Christian.” This made it all too clear to me that I would never be acceptable unto the God. And if God won’t love me whole else will? My views about God have changed a great deal. Stripping off the façade image of what others try to claim Him to be has helped me in many ways with guilt and shame. It has been a slow process, but that is what I do. Slow and steady baby! I was not consciously thinking these things, but I see it clearly, as I write.

This is ALL faulty thinking.

It is not true. I did realize that prayer journaling helped me stay in control of many emotions. I have journaled since I learned to write as a child. I was even scribbling way before I could write actual words. I can look back now and see the times when I stopped writing I seemed to have the worst meltdowns/shutdowns. There were times when I did not feel safe enough to write because others would steal my journals, or mock me for the things I had written. I was afraid to share my heart anyway, but most certainly in writing because as my mom puts it “Once it’s in writing that’s it now they can find it. It’s out there, and there is nothing you can do to change it.”

She has had terrible experiences with people using her words against her once she wrote them out. So have I, but it is the only form of communication with myself, and others that consistently helps me. I have no better way to communicate my feelings, or thoughts. I realized the other day that the feelings of guilt and shame stem from people making me feel bad and manipulating my emotions to get me to conform to their wishes. Being a person who gets physically ill at hurting another person especially with my words, I am easy prey for people who are emotional abusers and manipulators. Well I used to be, I have learned a lot in this past year.

I still need to stay on guard.

Not out of fear, but out of my gullible heart that wants to love and believe everyone is operating out of pure intentions. See I need to stay on guard because that is not true about all people, though my mind sways into that direction. I have past experiences with understanding to help guide me now. I did not have that before. I think with age, and looking back over my life this past year I have gained a lot of understanding. I see how many of my meltdowns/shutdowns have been triggered by not understanding that people have different ways of communicating.

This is not always the case, sometimes it has been strictly things like too many social encounters, sensory overload, or being tired. When all of those things are at an all time high meltdowns seem to be uncontrollable. Still for years I had no idea that there was a social/verbal/human play rolling on and we are supposed to know when to change into character based on where, and who were are around.

It is constantly changing, and maneuvering through our everyday lives.

It is a breathing living entity that no one knows, but understands is there and you are supposed to follow the rules that have no clear definitive explanations or directives. It is all very confusing — I do not understand why this game has to be played. However, knowing that it is there now has helped me not be so stressed – it doesn’t take away the confusion. I speak in past tense in this post, but I actively work through these things on a daily basis. I have learned much, but the meltdown I had a couple of weeks ago forced me to deal with what caused such an outburst on my part when I have not done something like that in years.

I have some answers and I am processing through them now. Simple answer I was tired, overloaded, emotionally drained, confused by David’s behavior, and my life is changing in some pretty dynamic ways. After thinking about it, it isn’t all that odd that I would need to decompress. I didn’t know how to express myself. I also had been holding on to many things for over eight years, unable to understand my feelings. The more I read about certain struggles from people who are Aspie’s the more these things are making sense. My mind is connecting emotions to words, and sometimes it can be confusing and overwhelming.

Trying to process those things, and daily life can be a bit much — I need to give myself some slack.

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04/23/12

Lost Tooth & Got A New Book

Ariel lost her first tooth! She is so excited. She has been waiting and waiting. Daniel has already lost four of his teeth and she was getting pretty bummed. She wanted so much to start becoming a “big girl”. For weeks now her two front teeth have been a little loose finally, the front left one got crazy loose. Giddy with anticipation every day wiggling her tooth with her fingers, (Washing her hands every time before she touched her mouth and then afterwards.) becoming too fixated she decided to use her tongue. We got to see a big smiley face with bulging eyes and a tooth waving randomly throughout a couple of days. Yesterday it was very loose and hanging by a root thread. She wanted it to come out so badly. Calming down enough to have a little after dinner snack of rice cereal, banana, and milk, (She said I had to put all of that.) while I was sitting at the computer, David was cleaning the dishes I heard “Angel! Angel come here!”

Before you go on, you must know I speak of blood and vomit.

Just a warning in case you get woozy from that kind of talk. Don’t worry no one threw-up. I saw David bringing Ariel to me, her mouth full of banana and blood. It was disgusting! GOSH! I despise bananas! Yellow and red mush mixed with the utter terror in my babies eyes felt like a USA Up ALL Night horror flick. I scooped her in my arms, plopped her on the bathroom sink and told her to spit out the banana. Her face looked sickly, I found out today that the banana mush felt like vomit to her and she was having a hard time trying to get it out. She was shaking, and so scared. I got the banana out and David had gotten me a wet cloth to clean it by then. As I cleaned her tooth, I asked her if she was in pain because I did not know why she was shaking and so scared. She told that she was not in pain. I realized that she did not understand why she had blood from her tooth. It was not what she envisioned. Her vision was the tooth popping out and a nice shiny new one popping in. La la la I continued to clean it, wiggling the tooth the whole time, and talking to her about what was happening. Her little tears trickled down her face, but soon came the giggles.

David chimed in explaining more about what was happening as I gently wiggled the tooth out.

She didn’t even know until I lifted it up and said: “Look what I have!” She squealed with delight, and said something like “Wow!” then, examined her tooth. It did not last long because she had to examine herself in the mirror. We wrote out her story today from everything that happened I am going to put it on the home school blog later this week. For the rest of the evening she leaped around in excitement, hand flapping, jumping, running from room to room, explaining how the baby tooth was there, but now it is gone. Also, giving detail about the adult tooth, and its mission to wiggle and squeeze through her gums so she can have a grown-up tooth. All day long, I have heard about the adult tooth. I have been informed that she looks very different now, and that she likes to stick her tongue in the hole. Although it is very important to “drink water and clean out the hole so that no germs will go up there and cause an infection.”

She is our residential ‘WebMD.”

She just might know more about germs than some medical folks might. Hee hee It was all very exciting. The quantity of blood was substantially more than Daniel. However, Daniel pulled his teeth out himself and threw them across the room or in the trash without telling me so maybe he did have the same amount, but it had time to be cleared out before I discovered a missing tooth. She didn’t remember that Daniel did have some blood as well and that is what scared her the most. She didn’t know why she was bleeding. Now she knows and she will be fine when the right tooth to comes out. It is rather loose too. Fun stuff!

Guess what else I am so excited about?

Give up? M’kay…I finally got the book I have been waiting for, 22 Things a Woman with Asperger’s Syndrome Wants Her Partner to Know by Rudy Simone. It seems like a quick read, I am on chapter three jumped ahead to some other chapters and cried. I am going back to chapter three. I knew this book would help me have words and answers that I have needed. It has given me a lot of clarity already only reading these today. I do plan on writing about some of it after I have time to process a bit more. I know that this is a book for partners, but I needed it to help with my self-awareness. David isn’t planning on reading it so I can digest it all and process it as much and long as I like. Another thing I am thinking of is giving my blog a face lift. I am playing around with new looks for now, but I am saying something ahead of time so everyone knows in case you come back and it’s all different.

Jolly Monday to you! (Or Tuesday wherever you are.)

[Show as slideshow]

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04/22/12

Bubble Fan “Almost” Meltdown

I have been trying to work on my meltdown post, but it is too long and I am not able to articulate exactly what I want yet. I need to keep working on it. It is exposing as well so I may be having a problem feeling so open and not realize it. Instead, I have decided to share about Daniel’s amazing job at self-control/ self-help. When Daniel has gotten upset, or gone into meltdown mode he has used me as his source of aggression release. Sometimes it is the house, or toys that he loves which turns into another ordeal. The majority of the time it has been taken out on me. I take responsibility for this to some extent because that is what I taught him to do. In order to protect the house, toys, Ariel and Joshua, and himself I guided him to use me as a punching bag. I did not know what else to do. At the time I would rather him come after me than pound his head against the wall, or destroy the house.

However, now that he is seven this cannot go on.

We have been working on self-help strategies without aggressive behavior for years now. He has progressed a great deal in this area, but there are times when he still is aggressive. A great resource that I found was Managing Meltdowns, (this is a quick read) and on this post Making our Way: Autism Video I have several other links to resources about meltdowns and tantrums. Deborah Lipsky has several resources that help a great deal with meltdowns, I have her book Managing Meltdowns. It is normally when he is overstimulated, and/or unable to verbalize what he is feeling. With his verbal communication and comprehension developing much more, we have been able to stop full-blown meltdowns before they turn into tornadoes bursting through the house. Not always, but much more nowadays. Daniel tries not to be aggressive — he is such a soft-spoken sweetheart that it is always a shock when he erupts. When he was younger, it was all day long, and turned into an everyday part of our life. I was constantly in protection mode for everything, everyone, and for Daniel. Because of this, I have residual anxiety about doing new things, or meeting new people. I do not stop trying new things or meeting new people, I try to prepare for it. He had no other way to communicate until we started occupational and speech therapy.

It can keep me on edge because of my own anxieties.

It can enhance my social confusion, and stress. Our play dates recently have been very good for all of us. I have been doing very well at not trying to explain every single detail of Daniel’s behavior. I have let him play and do his quirks and be himself. This has released both of us from stress. It is good because I have had to focus a little more on Joshua. He has been having confusion, and feelings of being left out. No one is leaving him out, but when he gets tired or overstimulated he has a hard time discerning the other kids’ behaviors. Geez! Where was I? Ok, we went out to play in the front yard on Friday with the neighbors. They had a wonderful array of bubble selections. When I saw the bubble fan, I had a slight panic. I have not let Daniel have a fan in a very long time. I do not know what it does to his brain, but he gets out of control, obsessive, and then very aggressive if the slightest thing goes wrong when he has a fan. Additionally, he was having the anxiety, and excitement of new people and being social. He also tried a Popsicle so add texture, taste, temperature, new food in general to the mix.

I swallowed my anxiety and decided to see how it would go.

He took to the fan right away and did not want to share, but he did and that was impressive. However, he was fixated on it. The kids all had a blast making bubbles all through the yard. I loved watching them play and have so much fun. Impressive things for me was that I had to continue to go in and out of the house to get water, band-aids, put things away, and take little ones potty, whatever else popped up. I left the children in the care of our neighbors! Yes, it may have been for a couple of minutes — a couple of minutes is huge for me! I felt comfortable enough to let Daniel be outside without me for a few minutes. It is amazing that I was able to do that with no fear. Granted I was only a few feet away, but Daniel can get in a load of trouble or harm only a couple of inches from me. The neighbors are very observant, and keep a close watch on the kids. Everything was fine and dandy until the bubbles started to run out. Daniel was starting to get too possessive of the bubble fan and I said it was time for it to go away.

He started getting angry.

He came toward me asking “Why?” repeatedly. He buried his head into my lap trying to push me over. When I stayed direct, and in control he got upset. He started raising his voice, jumping up and down, and wanting to come after me. I will say that it made a huge difference during this whole situation that the neighbors stayed calm, quiet, and let Daniel and I do what we needed to. I have had people interrupt, say things about him just needing “a whipping”, or that I needed to “nip that in the bud.” Those things do not help at all and it is not beneficial for the parent, or the child — it causes needless additional stress. I stayed calm and told him that if he did not stop he was not going to be able to have the fan ever again. He said: “Ever?” Because the “ever” word is a hard one and is hard to define since it is used often in a generalized context. I said: “I mean ever, as in you will not see it again.” He stopped, I watched his eyes as he processed everything, and about a minute later, he said: “Ok, I need white medicine.”

White medicine is about a 1/4 teaspoon of children’s Tylenol.

It is a long story how that happened, but it works and he believes it helps him to calm down. He does not get it every time he is like that only during extremely challenging times. However, this was the first time that he asked for it on his own. I usually suggest it at some point before he turns it into his idea. Not this time, it was all his. We went inside got a little white medicine, a cup of ice water, and went back out. He blew bubbles with bubble sticks, and played with the other kids. No meltdown the rest of the night, or the next day. Huge! Another thing I confess I was a little happy that he had a moment in front of them because he usually holds everything in until we get home. It is always frustrating for people to only see “good” behavior because then, they do not believe you when you talk about meltdowns. I do not want him to ever have meltdowns for his sake of course, but I also know that they are inevitable. Today has been a couple on the edge moments.

I think the weather is messing us all up.

I told him how proud I was of him. I gave him details of why I was proud and that he should be proud of himself too. I pointed out all of the positive things that he did, like keeping communication with me, asking me questions when he did not understand, walking away from me instead of coming after me, listening to what I was saying instead of screaming over me, things like that. I didn’t add things like “instead of screaming over me” when talking to him. I stated things simply and in encouraging word form. I showed him my enthusiasm, which helped him feel excited too.

Here are some things I said:

You kept talking to me that was great!
You asked me questions, wonderful job.
You walked away and took a break that was a really good idea.
You listened to what mommy was staying, high five!

Those are what he needed to hear.

Adding additional information can take away from the positive and make it feel like he is still being reprimanded even though what is being said is a positive. I know this from experience. People adding things like that negated many positives that were spoken to me. “Oh, Angel you did such a wonderful job on that project even though you took a little longer than needed.” What? Then, it wasn’t a good job, I failed because I took too long! He was very proud of himself and told David about the whole thing later that night. Daniel was all smiles when telling his story about the bubble fan. Of course, he has been thinking about it for days now, but we managed to fill the void of his fan love interest. He was surprised with the arrival of Bronzor a gear Pokémon! He laid with me in bed and told me how much he loved Bronzor. He also informed me that the lovely plushy gear he has devoted his love to has replaced me. It is a good thing I understand such deep object love. iPad where are you?? Oh, sorry I love you PC you are so faithful.

The bubble fan “almost” meltdown was a big moment for Daniel. (And for me too, we had several big moments really.)

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