03/23/12

At Home Autism Acceptance

With April coming around the corner, I am already anticipating the tons of things that will be seen on the internet dealing with Autism Awareness Month. Everyone has his or her agenda, I think that can be a very good thing. It gets us talking as a society, it gets people thinking, it can get people arguing, and I think it could be far worse to stay silent about autism than to argue. At least that is something. Personally, I do not want to argue with anyone though, I get sick and shut down at conflict. I normally see all sides, even if I do not agree with it. I can still see it and feel for them. (As long as it is not plain evil.) I have noticed this past week that Ariel and Joshua have been saying things about Daniel being autistic. They have done this more so in the last year. For some reason it is coming up a lot. It got me thinking about awareness and acceptance at home and how I need to do a better job teaching them in this area.

Daniel has had a hard time adjusting to the time change.

He has had his Hex Bugs taken away, and he is still unable to have them back. They continue to cause him more harm than good — stimulating wise. His inability to find a replacement interest has caused him to have the feeling of being lost. He is looping, and I have been trying to help, but he is stuck. We have to ride it out. Because of this, his other self-regulating stims have come back that he hasn’t done in a while. The good thing is he is more talkative, sharing what is on his mind, expressing himself, (as best as he can) and being much more socially involved with their play. There are great things, and bad things that go along with this. Ariel and Joshua get overloaded; when they do, they just stop playing. If not given an explanation it does not bode well with Daniel. We have been over and over this, they have to tell Daniel when they are finished playing and most of all tell him WHY. Daniel will be fine as long as he understands why they stopped playing, or they got frustrated. (I am the same way, it won’t hurt my feelings at all just tell me!) This can lead into an all-day meltdown. He does not understand why all of a sudden they are done. It feels like rejection. He thinks he did something wrong, but he does not know what.

Ariel and Joshua do the same thing to each other.

It can turn into a mess sometimes. Joshua tends to think that we can read his mind, or that he told us already what he was thinking. He and Ariel get into arguments about the house rules, social rules, Pokémon rules, game rules, how you should pronounce words, how things are to be put away, and many other fun rules that they have gathered away in their minds. (Rules that may or may not be quite accurate.) They are rigid and strict in their understanding of the rules. They also try to inform Daniel of the rules, but he always breaks them according to them. It gets very frustrating to hear them constantly telling Daniel how he is doing something wrong. Joshua cannot handle Daniel’s eating sounds, so he either yells at him or has his own meltdown because of the sound. We have an open floor plan home with high ceilings — it does not help the noise factor around here. It especially does not help all of us who are highly sensitive to sounds.

This would be the kids and me.

After the symposium, I have been more observant of the social dynamics between the kids. I have taken notice to how they speak to each other, and how they treat each other. Joshua voices often that he doesn’t understand why Daniel acts certain ways, or gets to eat things that he doesn’t. Food is a big deal to Joshua. Daniel has a very limited diet and I have to get nutrients in him whatever way possible. It seems unfair that Daniel gets to eat banana and yogurt for dinner, but Ariel and Joshua have to eat the dinner I made. A dinner that contains broccoli! Joshua doesn’t realize that Daniel’s “tasty” yogurt is swimming with sweet potato puree and I can guarantee Joshua would not like it. I am thankful that Joshua is able to tell me what bothers him though, and he is willing to listen most days. The kids have really kicked it up a notch at pointing out Daniel’s differences, and “favoritism” around here. I decided I needed to do something about it. (I have pulled some of this straight from my home school blog because I didn’t feel like rewriting it. I had to give that little confession — I do not know why. )

I know that it is a normal course of childhood for them to point out differences.

However, it still does not make sense to them why he gets to do certain things that they do not. At times, it feels very much like an injustice, though it is not. We try very hard to keep things balanced and focus on their needs as equal as Daniel’s. Ariel and Joshua show many autistic traits, but I am sure they could also fall under the “normal” category. They do have some social issues, anxieties and misunderstandings, but they may improve a great deal when we get into more homeschooling groups. I do not know we will have to see. Joshua is very social and has no problems starting conversations with anyone — he does gear everything toward his special interest though. Ariel expresses her anxiety clearly. She has anxiety when she goes to new places or meets new people. She says that she loses her words and doesn’t know how to talk to someone. She told me this week “Well I know how to talk to them, but I don’t know how to get my words in order or what to talk to them about.”

She does such a wonderful job at explaining these things to me.

Joshua and Daniel both do not know what they are feeling. Their confusion causes other effects, but it doesn’t happen until we get home — normally. They all have sensory issues that can cause meltdowns, they all have special interests that consume their everything, they all do not know how to talk to other kids even though I have used social stories, given them scripts, read books about it, but they still are awkward, shut down, or talk non-stop about their interest. Still Ariel and Joshua feel that Daniel is autistic and they are not. They are able to communicate their feelings much more than Daniel; at times, they feel that he is “freaking out” for no reason. I then have to explain to them the reason for Daniel having a hard time. They do not associate any of their behaviors as being similar as his. My plan this week was to help them see how each one of them is different and discover their similarities.

I am using the book The Autism Acceptance Book for all three of them.

I tried this book before, but they were not ready for it. It was last year I believe and I think they were still too young. Daniel knows that he has autism, but does not understand what that means. He thinks that he is the same as everyone else until someone says something different. He does not have a clear sense of self-awareness. I am hoping that working through this book with all of them will help them have a better understanding about autism and how it relates to each one of them. Ariel and Joshua can be Daniel’s biggest advocates out in the world of their peers. I want them to understand and be able to explain it to others as well. I do not want them to feel like they have to, I hope they want to share how important acceptance is on their own. I shared with them about bullying and why it is wrong. I have plenty of childhood, and adult stories to share about my own personal experiences with being bullied that I can pull from.

The kids and I come with scenarios and practice what they would do in these situations.

And let me tell you there is nothing wrong with running home, or to a safe place as quickly as you can! I have done it plenty of times — understanding now I had nothing to be ashamed of for protecting myself by getting the heck out of the situation. The kids understand what I am talking about when it comes to bullying, they have seen it on TV, they watched cartoons that explained how horrible it is, and we openly talk about it. I used that as an entry point to talk about autism. The reason that most people are bullied is their differences. If we understand our own difference’s, accept them, and feel self-confident about being different, we are better able to cast down bully type words. I do not want my kids to hide their quirks, differences, or stims. I want them to feel confident to be themselves, but also understand that if you live in this world as yourself there are those who will not like it. I think one of the biggest things that would have helped me, had I known when being bullied, is understanding that it was not really about me.

I didn’t do anything wrong.

I was being me, and the bully did not like it. The reasons for bullying do not have to make sense. This would have helped me too. If someone would have explained to me that, a bully can randomly pick on someone “just because” that would have cleared up the confusion that was looping in my brain. I would not have spent so much time trying to figure out why they did it, and why they chose me. It still would not make sense, but it would have helped me see that they were completely illogical in their thinking and they perceptions were based on insecurity, and wanting acceptance themselves. (A great deal of the of the time.) Discussing all of this brought us to the point of talking about autism acceptance. While there are some things I am not fond of in the book, I realize that it is geared toward neurotypical children. From that perspective, I can see it as a good thing. For us in this house…well we had to get over the whole “Take a walk in someone else’s shoes” idiom. Thankfully they explain what that means in the book because I was doing a poor job. I won’t go into it, but it had something to do with them wearing my shoes and then all of us getting confused.

Through the book, for each chapter at the end, there were a series of questions.

As I read the book and asked the questions, it was very interesting to see how each of the children saw themselves. The more we read the more I realized that Ariel and Joshua are on the spectrum much more than we thought. I have done this before; I see where I have fallen short in areas of helping them or recognizing their behaviors. They seem to have no problems until something like this opens my eyes and I ask them questions. It gets me in a loop of wanting to get them diagnosed as well. I wonder if it will help them, or if I haven’t done enough. This time around I decided we will wait it out until we move and focus on it then if need be. I am mainly concerned with social skills and sensory diet. I can already work on those things now. Overall, I think the book is an excellent resource in helping children understand what autism is like. The start of the book is about accepting others in general. I liked how they explained what acceptance was.

A quote from the book:

“When people look different from you or act differently than you do, the best thing to do is try to understand and accept them. In other words learn more about them, be kind to them, and include them in things that you and your friends do together.”

~ The Autism Acceptance Book

Autism can be difficult to explain.

I think the book does a good job at explaining some of the issues for children who are autistic. It talks about how people are different from each other overall. It asks questions about how “you” are different. It states that the autistic brain works differently in many ways. There are sections about the difficulties for children on the spectrum with communication, expressing themselves, senses, seeing the small details and focusing on them, playing differently, difficulties talking, which I thought worked well for the age group this is geared toward. They also suggest ways to get involved in helping support autism by teaching others what you have learned. They suggest presenting the information to their class, or raising money and donating it to an autism charity. At the end there are group activities, they get to create their own social story, and then make a scrapbook about what they have learned. My personal feeling is that books like these need to be added to school curriculum. I think it would be beneficial to children and parents to have a book like this in their hands. As well as for teachers so they can better understand and accept what life is like for children on the autism spectrum.

If we want to bring awareness and acceptance to the autism community this would be a great start.

(I know we need school funds, maybe it is wishful thinking.)

Ellen Sabin (Author, Illustrator)

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03/19/12

Short Post (Kind of) and Clouds!

I have been writing a lot lately and need to let some things sink in. I forget that I do not have to publish every single post I write. I know this, but sometimes I am struck with intense emotions of: “I have to get this out, right now!” Today I am keeping it light. I have not shared my clouds lately, so I will share a few. I will also share some of what the kids have been doing. I had a few intense anxiety filled days after the symposium. I am hoping to articulate what I have discovered about my brain, its memory leak, and debugging some of my system. (Not today) The kids have been off — I think it is because of the time change and me being gone for a whole day. Daniel has had potty problems, Joshua has had a couple of accidents too the last few of days. Hmm…Just after I commented on another blog how we haven’t problems in a long time. :-/

Potty issues send me into hypersensitive mode.

I do not do well with wet, sticky, smelly, poopy clothes, floors, or bedding! It makes me feel nauseous. I can’t even talk about it anymore because I am getting that sickly feeling. Despite any mishaps, we had a good week. I was very happy that I did not have another meltdown. I had a couple of social encounters that confused me, sent me into a loop, but only for a matter of minutes. It was not my usual hours or days, leading into: “What did I do wrong?” type of thinking. I told myself I was socially stressed and needed to let it go. After thinking about my meltdown the day of the symposium, I was very proud of the fact that I did not mentally attack myself for getting lost. I did ask questions like “Why can’t I find it?” and “What is wrong with me?”, but I did not go into negative self-talk. I let it go, and went in to conference hall. I did not talk negatively about myself to others while explaining that I got lost and had a meltdown.

These are some big accomplishments for me.

When I drove home, I calmly thought about why I got lost, and accepted it. I told myself it was ok, and I didn’t continue looping about it. HUGE! My stress levels were at an all time high, even though I looked calm, cool, and collected. I have learned the art of masking my stress and anxiety so well that at times I can even fool myself. I am still in recovery and realized that a couple of times this weekend I went into an old pattern loop. It is a loop that pops up about people who I care about and love. It starts with questions about their behavior or words toward me. I find inconsistencies from experiences with them, or I misread their actions/words. I start to think that they do not care about me at all. I begin to comb over actions or lack of actions and create reasons for why they no longer care about me.

I did not have clarity about this until I wrote my last post.

A little later in the day, I caught myself in this loop. I was making up irrational ideas based on what seemed to be perfectly logical reasons. I did reason logically, but my outcomes and things I was reasoning were illogical to a point. Some of them could be quite true. However, I was basing my reasons on inaccurate, inconclusive, and past experiences that no longer apply. When I took ALL of the information, adding their character, who they are in my life, and how they have expressed their feelings for me, it revealed that I was looping a negative anxiety loop.

My conclusions were based on rational (faulty) emotional reasoning.

My thoughts needed to be evaluated based on rational emotional and hard evidence based reasoning. It felt so good to see with clarity one of my tried and true faulty loops that has been with me since a child. It was empowering to be able to recognize my negative loop and be able to stop it. I thought about my reasons and quickly concluded that I was still feeling the aftermath of anxiety from last Wednesday. Yea! My mind has been getting dizzy too because the kids are completely engulfed with Pokémon. Everything is Pokémon! All three of them are talking non-stop about them. Drawing them, building them, acting like them. They are now Pokémon!

Ok, that is not true, but it feels like it.

Anyway, the good news is that the kids have been playing Pokémon very well together. There have been some heated discussions about it, but overall it has been good. It is awesome to see Daniel be so involved and remember the names and even act like Ash. I haven’t seen him act like any type of character before. He has been practicing making their animated faces and it is the funniest thing to watch. I asked him what he was doing and he said: “Making my mouth go down because I am grumpy.” Joshua said: “I make that face all the time. It means I am grumpy!” Everyone has their own Pokémon deck they chose Purrloin for me who happens to be a Devious Pokemon. She also has the abilities of Limber or Unburden Prankster. AND she is like a cat! They also gave me a deck of “dark” types, Zorua is in my deck. A tricky fox whose ability is illusion, you know it! Hee hee I am done!

Picture time!

[Show as slideshow]

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03/15/12

Excited-Overwhelmed-Relieved-Exhausted

Yesterday I went to an autism symposium featuring speakers Ami Klin, PhD and Celine A. Saulnier, PhD. The talks were great and I plan to share all of the information I gathered and learned from the day as I did last year. (You can read that here.) I need to process it all. It was a lot, but very good and positive. Judging solely on their talks, small portions of their research they shared, and their enthusiasm for advocating for the autism community I left feeling very hopeful. There seemed to be a constant message filtered throughout their talks.

In my own paraphrase:

“We have to do more to help the adult ASD community. We have to do more in helping get early diagnosis and intervention. We have to equip and educate parents better. We need to teach those on the autism spectrum functional abilities not just the act of doing them. (An example used was with eye contact.) Instead of only teaching them how to make eye contact, teach the functionality of why we make eye contact. Why is it important and helpful to make eye contact? What are the intentions/context of what is being taught to a child/person who is autistic?”

While that is clearly not exhaustive, I think you see why I was so hopeful.

I felt they had genuine motives for wanting to see children/people on the spectrum succeed in life. It will take a few days for me to get all of it written. I am still overwhelmed with emotion and sensory/social overload from yesterday. I need to process and deal with that before I can do anything else. I was doing great in the morning. It helped writing my Pi post it made me calm and focused. I was running a little late because of it, but I managed to leave on time. I was stressed because I had to stop and get gas, but I managed to stay calm. The drive went well; I listened to my music and enjoyed the nice weather. I forgot that I was going to have to go over the gigantic, humongous, ungodly enormous bridge that looks like it is only hanging from wires. I can panic on bridges; I think it’s the feeling of not being in control. I focused on getting over the dangling giant. An anxiety diversion for me is water. I looked at the huge body of water, quickly to get a glimpse of ripples that went across it and it made me smile.

I had to force myself to look back at the road though because I can be sucked into staring at water.

I finally made it to the entrance of the university and went blank. I could not remember which way to turn. The directions do not put the actual street that the building is on — I have forgotten this every year. It is not only me last year David got all confused as well, but in much less time than myself the year before. I turned this way, then that way, then this way again. I went into loops — I ended up in strange places on the university grounds. I could feel the tears welling up and my mind start to attack me. “Why couldn’t I find it? What is wrong with my brain? Why is it completely blank?” All of the scenery started to blend I could no longer determine which way I had gone before. I kept looking at the clock freaking out. I was so happy that I had arrived thirty minutes early, but now I was watching all of my minutes disappear.

Finally, when the tears started to become uncontrollable I told myself to call David.

I called and he didn’t answer. I called again and he didn’t answer. I really started to panic. I called again and he answered. I have no idea what all came out of my mouth. I was stuck at a light at this point (They have the LONGEST lights!) I started yelling things like: “Why can’t I find it? Why do I do this? What is wrong with me?” He tried to calm me down and he told me to pull over to try to calm down. I was only partially listening to him at certain points his words didn’t even sound like words. I started hyperventilating and couldn’t get my words out. In between deep breaths came:”I can’t-I cccaaa-cccaaa” I eventually screamed out a nice F-bomb three times. The people who know me well know that if I say curse words it can send me into immediate guilt. I do not condemn others for saying curse words, but I believe because of past things said to me I feel like I am bad or wrong for doing so. I know it’s not logical, but the feelings still come. I do not use many curse words.

I was trying to get out that I could not pull over.

I was stuck in a traffic loop and trapped between cars in the flow of traffic. He gave me landmarks to look for and once I saw the first one my memory started to come back. I found it right away. I was so upset with myself because I had turned every turn, but the correct one and I didn’t know why! I didn’t have time to deal with that I made it right at 9:00am and quickly went in. Thankfully registering was a pleasant experience. I prepared myself for the panic of seeing all of those people in the room and trying to find a seat. I didn’t see people I saw blobs, and dark blue chairs. I looked for an empty chair and went for the first one I saw. I am SO thankful I chose that seat. I managed to ask if the chair was taken and the woman was very kind and said no and offered for me to sit there. I had planned to be in a shut down state after what had just occurred before I got there.

The woman was very social.

It ended up helping me quite a bit. She shared that her grandson had Aspergers and she was coming to the symposium to learn more and share it with her son. He lives far away so he was unable to come. My mouth had no control. My anxiety, stress, and the already sensory overload I was feeling from the room and popping sound system took hold, I had no filters. (Add lights, food smells, perfume smells, there were more, but I will stop.) I blurted out: “I have Aspergers, my son is considered high functioning (whatever that means), and that my other two kids show traits. I have a blog, there are many resources on there, and I have links to many other adults/parents on the spectrum and OH! I am linked to the Autism Blog Directory that has all perspectives and is very beneficial. They have some links for when you first get the diagnosis.” Blah, blah, blah She told me how I seemed to be doing well. I shared with her a little about my meltdown before coming in. (Side note: I later had a slight panic because I realized that I gave her my full name and blog address. I am semi-anonymous for various reasons so I had to tell her that I was anonymous.)

I did what I always do — I toned it down.

I never want anyone to worry about my mental state or be concerned so I tone down my actual feelings and act like everything is ok. I have had too many people misread my meltdowns as severe emotional problems when in actuality I am having intense physiological happenings and need to scream, throw something, sob, or say whatever is flying through my mind without judgement. I told her that I had learned how to hold everything in until I got home. When I said that out loud I had a moment of realization of how I have learned to hide so much about myself. I have learned to hide my quirks, my anxiety, my fears, my meltdowns, my interests, my love, anything. I have learned to hide so much of me and that is not living in this world — it isn’t even surviving. I don’t even know what to call that. I shook it off and continued to talk to her. In the middle of this, another woman came and sat down. I completely shut down. I didn’t know what to say or what to do. I looked at my packet and stared. The woman I had been talking to jumped in and introduced me to the new woman. It was as if I was having an out-of-body experience. I was watching the woman introduce me, seeing her mannerisms, and hearing her words, but it was foreign to me. Yet, logically I know this is what I should have been doing for myself. However, I couldn’t.

The new woman was a mother of a son on the spectrum and a teenage daughter with Aspergers.

Both of these women were wonderful. The woman (the grandmother) who I had initially been talking to, shared with the other that I had Aspergers. I could see the comfort and motherly type feel both of them had toward me after I had shared. I had it flash through my head how I get this a lot. People want to take care of me, but I am so independent and capable in many other areas that it confuses them. It confuses me too. I don’t know what to do with it, I want to have people there, but I also do not want to depend on anyone. Strange. I felt at ease and calm when the first talk began. After the talk was a different story. I sat there listening to this man describe me word for word. I was consumed with the fact that I sat in a room full of hundreds of people and I didn’t understand any of them. I felt so alone, and isolated in my thoughts as he shared repeatedly how the autistic mind is different from others.

He never spoke about it in a negative context it was always with the purpose for the group to understand.

Still I could clearly feel that they did not. The words “This is a social disorder” rang through the whole talk. It was the first time I understood just how much I am socially disabled. I watched as people laughed at things that I did not get. I listened as he shared stories that were describing me or my children. I watched video clips of kids/adults on the spectrum that made my revelation solidify in my brain. I AM SOCIALLY DISABLED! The tears came up several times during the talk and I swallowed them down. I was both happy and sad at the same time. I was reading about me and understanding more of me — I was also realizing that I am indeed very different from many of my fellow human beings. One of the things that was mentioned was that those who are higher functioning tend to have higher anxiety and depression because they are acutely aware of how different they are. I had that hit me like a ton of bricks as I turned around and faced the other women sitting at the table.

Both of the women next to me shared how it was a good a talk. (Subject matter — it was somewhat hard to hear him.)

I sat staring holding back the tears and said: “I am overwhelmed”. I do not know what else I said, I tried to describe what I was feeling, and they immediately went into comfort mode. It was fine, but I wasn’t seeking comfort I just needed to process. I went into my sharing information about autism mode. It is a special interest and I have gathered and consumed so much information about it that I can talk for hours, days, and years on the topic! As we sat there talking I would wait my turn, talk, interrupt, say sorry, but continue to talk. They were very kind about it and didn’t seem to notice, I didn’t either, until the talk began again and he described how a person on the spectrum tends to communicate. He said that it is as if they have a continual conversation going on about their topic, they will stop and turn take, but they will begin where they had initially stopped in the conversation. It is as if they pause, and then start up until they finish to the end of their conversational loop. He said it is as if they are having a conversation with themselves at times.

Now some of this could sound negative it is not.

I am not giving full context so do not make any judgments of him based on these fragments. I am sharing this because he described exactly what I had done only moments before, but didn’t realize it. I thought: “OMG! I wasn’t truly listening to them I was thinking of the conversation in my head and what I needed to get out!” It wasn’t that I wasn’t listening to them — I was just more focused on what I wanted to say. I also realized that I do this in social settings that are not one-on-one. If I am one-on-one I can stop my conversation loop and pay attention to the person most of the time. In social settings with multiple people, it is too much. I need my conversational loop to survive. I need my special interest topic to be my focus otherwise; I will shut down, or get overwhelmed. There was so much more I hope to tie into the other post I will write. To give a feel though of how awkward it was for me at times he asked the question: “How many of you have counted the light fixtures in the room?” I almost raised my hand, but quickly realized that I shouldn’t.

I have counted them there are 258.

That is as accurate as I could be based on the three years that I have sat in that conference hall sitting on the same side every year. In order to get a complete accurate count I would have to walk the entire room, but I am fairly confident that is that correct number. There are also 12 rectangles that surround the huge rectangle. They keep all of the 258 square fixtures tightly tucked in a nice order. I had to place tissue in my ears because the popping and buzzing from the speakers were making it so difficult for me to sit in there. I covered my ears when they clapped, I was startled when their videos were too loud, but overall I held it together very well. When I left, I was feeling more positive, and I remembered to say good-bye this year to the women I had talked with. I did not the last two years in a row sorry other ladies I met before. (Here is my post about the social stuff from that symposium.) I think it helped me a great deal to see these doctors be so supportive and understanding to the autism community.

It also helped me a great deal to be next to these two wonderful women.

The grandmother, thanked me and told me that I was helpful. I really hope I was — she helped me too. The mother I sat next to, had many similar experiences in her journey with autism. It helped me to hear that she had the same struggles with her son at times and no answers as to how to fix it. Sometimes people/therapists can make you feel like you are doing something wrong if the method or ideas do not work for your child. Every child is different — what works for others may not work for my guys and vice versa. He stated that people with autism need to learn about themselves. I will write more about this later. It was very good to hear and confirmed for me that I am not the only one who has been utterly confused about who they are. Also, that I have been on the right track with trying to discover the “real” me this past year. They said every child/adult with autism is different, they need individual plans, individual helps, and they need to have their own success plan. To that, I say AMEN!

There were so many good things I want to share, but this is rather wordy already so good-bye for now.

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03/9/12

Did Yesterday Happen? Really?

The other day I wrote about what a great day it was, and it was indeed. However, after I posted the night went downhill. Daniel and his Hex Bug’s had to be separated. He had been getting overstimulated for days with them. I tried to limit his time, but he was all consumed by them. He would not turn them off, and requested new batteries all day long. That gets expensive. He had dismantled several of them, in his anger he had thrown them across the room which caused them to not work right. He had also put them on toys that have magnets in them watching and observing what happened. After they had enjoyed their wild magnet ride — they were not as lively as before. This has been going on for a few weeks. We had to replace several of them otherwise we would not have been able to get back to our regular schedule for the day.

Finally after about a week of intense Hex Bug frustrations I had to take them away Wednesday night.

Daniel and I were up past 11 pm I think because he was too upset and didn’t understand why I took his Hex Bugs. I had to explain to him that they caused him to get overloaded. I brought up his other things I had to put in the garage like the Snap Circuits, his marble maze, his fans, his cars, I cannot remember what else is out there. I reminded him how they made his head feel and that he would get angry and throw them. I asked him if he remembered what he did with them and he did. He was upset, and started standing on his head asking: “Why am I doing it again?” over and over. I have been trying to limit his time with the Hex Bugs just like I did with all the others, but he was unable to let them go. It consumed his everything. He would keep them with him all day and night. The over-stimulation was getting too much for all of us and I had to put them in the garage. We are taking a Hex Bug break.

I was concerned about him going through withdraw that normally happens with “breaks”.

I had prepared myself for a rough day yesterday, but to my surprise he was completely calm and happy. I suggested we focus on Lego’s as his new toy of choice. He doesn’t take to them like Joshua, but he is willing. We will be creating Lego things for school today. He told me all day how he was doing very well at staying calm. It was beautiful outside so we played out there for a while. I believe the trampoline helped him as well. We did not have one single meltdown. He continued to explain why he could not have his Hex Bugs right now — scripting for himself. The focus now is on a Hex Spider. He will not be getting that for a while we will see how things go. My day had the underlining anxiety of waiting for a meltdown at any moment, and I had additional underlining anxiety because I was supposed to start my ballet classes last night. New place, new things, new people, hit a car the last time, in attempts to try again I went last month to discover the classes were canceled for the month of February, I did not have my hopes up last night.

I was determined to try again though.

I was not very anxious only a little, but a little anxiety can cause me to be off very much. So when David came downstairs to tell me his happy news I didn’t respond in an over enthusiastic way. David has made some big changes in his life this week. He is feeling excited and nervous at the same time. I had not understood the extreme feelings he was feeling. For him the news that he was sharing was encouragement. He felt it was confirming that he is making the right choices. For me? I didn’t see anything concrete or definite so I did not respond in a very excited way. I deflated his moment by implying something about nothing being definite. At the time I did not understand what I said that caused him to feel discouraged. He was clearly deflated and a little upset at me. I was completely confused. I told him I did not understand at all why he was discouraged. He tried to explain it, but I got more confused. I felt like I had done everything I could to be supportive, I had encouraged him in all of his decisions thus far, I was excited for him, and I said so in the days leading up to this and at that moment. David says that I remind him of Sheldon from Big Bang Theory many times. Though I was happy for David my response was something like this because there was no definite. I did add a little “Yea” for good measure after I realized he was deflated.

The major issue here is the way he is encouraged and the way I am.

I need concrete the “maybe’s” do nothing for me. Yes, what he is talking about is pretty much a done deal — there is still a chance that it will not work out. I am cautious because of all of the times my hopes have gone up only to have them collapse. I am not pessimistic or negative — I am cautious and analytical. Not that he isn’t, we each have our own areas of caution. This one happened to be mine. This whole interaction threw me and I started to feel more anxiety about going to class. It was another moment of me seeing how I do not understand social dynamics! How could I walk into a room of people I don’t know in a leotard and tights and try to be a social creature? I cannot even do well with a person I have been living with for over eight years! Ug! He went upstairs to sort out his feelings. I tried my best at letting it go. I told myself I had to try the ballet class even with this tinge of fear of social stuff and not knowing what else would happen when I got to the dance studio.

Everything settled.

It still took me until this morning to figure out the social mishap between David and I. I got ready and headed out the door it was 5:44pm I giggled. I got there early to pay and no one was at the desk…again. I stood there for a few minutes and finally asked a woman sitting in a chair if she had seen anyone. She told me she had not seen anyone since 5:30pm. Great. I waited a few more minutes then went to the car. It was 6:11pm I laughed. Seriously it was getting ridiculous with the double digits. I listened to some music and got myself so worked up I decided to leave. I felt the anxiety rise. I couldn’t stay. I decided to go home. I felt in my gut though that I should stay. The anxiety was taking over and I drove off. As I did I heard: “If you leave nothing has changed. It will be the same as every other time.” I kept driving feeling sick to my stomach listening to music trying to make the voice go away. I then heard: “Go back.” I looked at the sky and there was the HUGE full moon talking to me! I was on the main road heading straight home when a car pulled out in front of me the license plate had “33″ and “EE” on it. I would give the whole plate, but I think that would be wrong. I forgot to mention that on the way there the car in front of me had “88″ on it’s plates.

I rolled my eyes and said: “You have got to be kidding!”

The next light would have taken me over the bridge with no turns — I decided to turn back around at the light and went back to the studio. I sucked in my breath, walked in and there was a woman behind the desk, she was very kind and helped me. I was still a little early so I sat and waited. A dance instructor came out who I immediately felt calm with because she reminded me of my no nonsense cousin from St. Louis, MO who is hilarious. She acted similar to her and looked like her too. She was subbing the class until the male instructor came. She made me feel comfortable and accepted right away. The class was small last night, which was good since I was feeling nervous. The instructor is a retired Russian trained ballet dancer. He was a big deal I guess? I have to find out more about his story. It got my imagination going a Russian trained ballet dancer turned real estate agent on a small island with limited cultural influences. Oh, yes. Great story. I loved every second of it!

Things started coming back to me quickly.

I was like a little girl all giddy. Since they had not had class last month he was going over the basics which worked perfect! I haven’t felt such happiness and “rightness” with my body and mind in so long I cannot remember. I was ok with losing my balance — I didn’t feel bad when my feet didn’t move with my arms. I was happy with the process of learning. Everyone had a great attitude about it too. I watched the other ladies make mistakes and they were fine. They just did it again. Both of the instructors encouraged me and said I did well for my first night. It has been ages since I was in an actual ballet class. My kitchen floor does not count. He was picking apart some of the girls, but in my mind I understood that he was doing this to help them. He saw their potential and was telling them to step up to that potential. He told me he would start doing it to me soon AND I was ok with that. The reason was that it was not a negative criticism — the motive was to help not to tear down. I was so happy to feel the freedom to make mistakes and accept the process of learning. It is not right or wrong. It is not good or bad. It is not black or white.

It is the process of learning which requires mistakes if you want to get better.

I learned a lot of lessons yesterday. In the past my anxiety with Daniel would have derailed me from doing anything and I would have stayed home. As a matter-of-fact that is what happened last week. I just could not get myself to step out of the door. I would have also been completely derailed and shut down from my interaction with David. I pushed through because I need to change. It is up to me how I respond to these things. I knew that the classes would be good for me so I had to try no matter what the outcome was. I want to point out I did not hear an audible voice or anything. I know the moon was not actually talking to me. (I know my number thing may sound silly to others too. My whole double letters/number thing, but that is part of me. It’s something that I have tried to deny for a very long time because people made me feel foolish.) I listened to my inner voice. It is the one that I have drowned out for so long that I forgot what she sounded like.

I am so glad that I did listen to her last night.

I am so happy that I stepped out, and had such a wonderful experience. I really needed that. I left there feeling whole with myself, and positive about going back next week. Everyone was so nice and accepting of me. I am not used to that especially around here. My oddities and quirks are like flares in this town sometimes. The ending of the story. I walked out and smiled at the glowing moon. As I was driving home I looked down the clock said 8:11 pm. The radio ended a commercial at that very moment and started a song by a band that I love and have happy connections to. I will leave with it. THE JOY FORMIDABLE – A HEAVY ABACUS (It’s a rockin’ song. Abacus! Funny, funny. All these planets and the moon are messing with me. Lol!)

My world trips me out sometimes — seriously, I feel like I live in a book…maybe I do.

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03/4/12

Stolen Identity – Getting It Back I

I am apprehensive in posting this. I feel exposed, but mostly I am anxious about sharing some words, and attitudes that I encountered with autism. I feel that I must do it though. There is still such a lack of knowledge about autism, and what words can do. Unfortunately my experience is encircled with religious views that caused my confusion. I am going to attempt to share a personal experience that happened a few years ago when we first moved here. The main theme from this is my personal social confusion and the feeling of having my identity stolen in multiple ways.

I can think of three at the moment.

1) People confusing me about autism. 2) People making me feel like my son needed to be fixed, in my mind since I understood him it was a constant reminder that who I was naturally needed to be hidden and changed. (fixed) 3) People who have seen my qualities and used them for their own personal gain pretending to be my friend. These are some things I hope show through sharing this experience. My identity was first stolen from myself. The hurt, and damage that was caused from rejection, being bullied, being in an abusive relationship, and continuing to gravitate toward people who were manipulative and in a constant state of insecurity confused me so much that I finally withdrew so much that I could not even remember the real me.

I am hoping that I can stay direct and focused.

Be warned it taps into many other connections that could lead me down multiple roads of tangents. It has the potential of leading us down winding paths — I will do my best to keep them as conducive and cohesive as possible. I want to make very clear that I am not attacking a belief system. I never intend to do that. I am simply explaining my experience and how harmful it was for me. I respect the freedom we have to express and to believe in our own choosing. I am not talking about beliefs here I am talking about actions, and words used in a context that caused me pain and confusion. I do feel that it is important to share because I believe that some of what I share others have gone through, may be going through now, or know someone who has experienced it. We need to know that we are not alone. It does hurt, and should be talked about more.

This is part of my healing process dealing my anger that I have felt with myself and others.

OK! Here I go. When we moved here I was starved for community. I was longing for friends, and people I could relate to. I had been isolated for years in the city/state we had been living in. We also experienced some major forms of disillusionment while serving in ministry and being exposed to the inner workings of several religious groups. There were many contributing factors to my isolation — the biggest being after having twins (Daniel and Ariel) and having no help I had no friends or family, and then having another baby (Joshua) 19 months later. It is overwhelming with toddler/baby stuff, but the additional confusion and lack of knowledge about autism and sensory integration mixed in made it very stressful. It was a lot for me, and I felt very alone.

I longed for people to understand me and my kids.

I wanted to know why Daniel was not reaching certain milestones, and why he seemed in such a different place than Ariel. I was told that it was because he was a boy, and I had not been around boys so I thought that was possible. Then it got to the point where our pediatrician was getting a little concerned as well. Evaluations started then, but we had very limited knowledge of autism and did not understand what they meant by occupational therapy and speech therapy. No one explained anything. We were planning on moving anyway and lost insurance at that time as well. (We were able to afford it later, only to lose it again. We have a whole insurance roller coaster story.)

When we arrived here I had expectations of people understanding and caring.

The church my mother was going to had several families with children on the autism spectrum, special needs, and with other disabilities. They acted as if they had a heart for autism. (I cannot go into this it is a long story, and does not contribute to what I am talking about. This little mention is to remind me to write about it.) Their true heart was for healing autism. I was already surrounded by this mentality because our family’s beliefs were similar. I didn’t know what autism was, or even how to understand it. I assumed the role of accepting this attitude even though I found it very confusing and damaging. I didn’t know why so I felt since I could not explain it I must be wrong. I was in a constant state of confusion because I understood my son without knowing why, and I was being told that he was not who he was intended to be. There were statements said to me such as: “Autism is from Satan.” This is beyond hurtful.

I was told that I had caused autism because of my own sin.

When I refuted that I was then told it was because of my husband’s sin. When I refuted that I was told it was ancestral sin and I needed to pray and ask God to reveal what curses I needed to break from our family history. I was watching only “religious” shows at the time and on several occasions TV spiritual celebrities would have people on their shows talking about their new book and how their child was healed from autism. There were “healing” revivals that hit local towns, and shortly started to fill the churches around here as well. I was told to take Daniel to get him healed. I did not go, David would have thrown a fit anyway he is very much a skeptic growing up in churches like these. I never felt right about taking Daniel to a healing service of any kind. I may have gone by myself if I felt right about them, but I didn’t and that is another long story too.

When it comes to my children I (David as well) am very cautious of these types of things.

I was in a constant state of confusion between the religious circles saying autism was a sin of mine, my son was inflicted by the devils’ schemes, or the groups that claimed it was vaccines and the government/medical field all working together. Several years ago the web was still saturated with hearsay and websites without the best information because it was strictly one-sided or filled with pseudoscience. I couldn’t discern anything. I found snippets of truth everywhere, and I saw snippets of condemnation and attacks. I had no idea what to do. Thank God for Tony Attwood’s book, and our pediatrician we found here. I read everything I could from various camps, I was reading medical sites, and we started the process of having Daniel evaluated again. It really got confusing then because I was getting legitimate answers for Daniel, the other two kids, AND myself! However, everyone around me was saying not to trust doctors, and Jesus will heal him!

David was in a state of denial that he only recently confirmed, but I felt all along.

My family was also in a state of denial that has started to turn around. I was so utterly confused and full of guilt because no matter how I looked at it I was the one who was at fault. I finally got to a point where I took on a “Screw Everybody” attitude and starting “joining” Daniel. I started really helping him the only way I knew how — the way I had done it my whole life. I allowed myself to see the similarities between Daniel and me. I did what I intuitively felt. Many times they were the right things to help him. Now that he is older he is discovering his own way, and that is awesome! It took quite a while to get to the “Screw Everybody” stage.

I was in constant inner turmoil.

I didn’t know what to believe. I had religion telling me one thing, the other groups me telling another, I had scientific studies telling me something else, I had doctors giving me answers, but wanting to turn my baby into a guinea pig, and a husband who is a scientist who was telling me that he would grow out of it. (He no longer thinks this; it was part of his way to deal with it at the time.) I give this for clarity to the frame of mind I was in to prepare for this next section I share. If you read any of my blog you will discover that I can have some serious social confusion. I can also get stuck when I have conflicting beliefs and I do not see answers, but what I perceive as attacks. It causes me even more confusion because I always think that people want to discuss and search for answers. I do know that this is not true, but I forget especially when it comes to topics that are heated. It can cause my heart to hurt deeply and I will sink into depression.

I am very good at hiding my confusion and depression though.

I learned early on to hide it, then I would go into myself and loop about it until it drove me to breaking points and it would burst out in some form. It was usually through a fit of rage, later to be directed into addictive behaviors. No one knew (knows) what was going on with me until something would blurt out of my mouth that was considered incredibly rude, or strange. Or I burst out in tears, or anger. The social confusion and the responses from others that I misunderstood or did not understand at all caused me to sink into who I call “Faux Angel”. She was my protector. I hid a lot of me, but when the real Angel would poke out, Faux Angel made sure to push her back.

However, I would get too tired keeping up the façade.

Or I would start to feel comfortable and safe so my identity would come out. Every time I came out something happened and my identity would be stolen again. It is so difficult to truly walk in my identity because I lost who I was long ago as child. The core of me never went away, but I lost her. You can never run away from yourself there will always be some parts of the real you manifesting through. But the dear parts of me – the ones that had already been hurt too many times were stuck far, far back in a vault.

Even still I have a longing to be myself and share with others.

Years ago when I started to regain myself again I went through several things that are considered traumatic. I associated those events to me starting to show who I really was again and the reason for the situations happening. I felt like the “real” me caused rejection, and that I could never be accepted for who I was. I assumed the real me must be wrong because every time she starts to come out people attack, or leave. Part of this comes from a faulty belief system that I was surrounded by my entire life — the other comes from a lifetime of my perception of rejection, or actual rejection. There is also unexplained rejection, and unexplained abandonment that started from my childhood on. I have gotten a lot of answers about my childhood in recent months that have set my mind free. The two major contributors to my lifetime of struggles have been social confusion and environment. That is another post hopefully I will be able to write at some time.

Back to my original purpose.

When we moved here, I had expectations of a loving and accepting church family. I participated in everything. I served everywhere my motives I have since discovered were not all that pure. I was escaping the non-stop meltdowns, a non-verbal three and a half year old who did not feed himself, was still taking a bottle, still in diapers, the occupational/speech therapy twice (it started off as five days) a week taking three to four hours out of our day, a husband that I was confused by and angry with because I felt isolated and abandoned, two other little ones that needed my care, a house to keep clean, a mom who was on the verge of a break down, and no one listening to me about Daniel! I wanted out of the house. I wanted friends. I wanted God to fix it! I would do anything and everything to serve God and His people just so He would make it right. I had confessed all of my sins, I confessed for everyone else’s sins also, I served for the Lord, I danced for the Lord, I prayed for everyone who came in my path for the Lord. I filled my house with worship music, I asked for the healing power to come and “Heal my son!”

Because everyone was directly or indirectly telling me that was what I was supposed to do.

Coming up next Stolen Identity – Getting It Back II…

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02/27/12

Change…A Lot Of Change…

I am feeling kind of overwhelmed with some changes that are going on around here. I am also not sure how to process certain events that are taking place…like things going right. I mean everything is falling in to place for things to actually happen without great hindrance or struggle. Yes, I am not used to that at all and I do not know how to process it. The funds we needed to get Daniel reevaluated and the funds for my diagnosis evaluation have come in and it was very unexpected. I am not complaining, but I always have that hint of “Great! Everything is going right, now what bad thing is going to happen?”

I try not to — I really do not want to think like that.

It seems to be the pattern though. I am trying to focus on living in the moment, being grateful for the resources, and the positive things taking place. I admit it can be a little hard though. I am adjusting to my “creepy” liking sister moving back in with my mom. I think it will be really great for her and mom. Those two are SO much alike. They are perfect roomies because they both have many of the same “quirks” and “rituals”. This particular sister mom and I think is on the spectrum as well, but we will let her figure that out on her own. She is already starting to notice many similarities that she had not seen before. She is 24 years old and has had some pretty traumatic events happen to her already. We almost lost her a couple of years ago.

She almost died due to a serious complication with an autoimmune disorder.

The doctors are still stumped and could never rightfully diagnosis what it was; at one point her platelet count was at 7. She was hospitalized several times, and went through different procedures. They finally tried a new cancer treatment on her that worked, and she has not had any problems since. It was very scary. It was about a year later that her boyfriend who she was living with got upset with her and packed his stuff up one day when she was at work and left. She never saw it coming, she had to move in with my other sister who operates out of emotion and is always unable to read. It is hard for all of us including my “emotional” sister; she is surrounded by three other women who don’t get it! Sigh…for all of us.

My sister moved in with my mom to try to get her life on track.

She is usually very level headed and she is bright. (Both of my sisters are very bright. My other sister has great insight a lot of times also, but she doubts herself.) She already came up with a two year plan to go out on her own. She plans everything! It’s new though, and we all are adjusting. I do feel much better about us moving back to my hometown with her living with mom. They are good for each other. I still don’t want to leave my mom, but that is me being a big baby and caretaker at the same time. I am freaking out the closer and closer it gets to us moving as well. A lot of changes are going to happen then. A LOT! I am feeling very confident in my progress to be able to go back there and not be traumatized by my past. I have processed and dealt with a large portion of that trauma in my life. I no longer call it the “armpit of hell” that is good. Now I just call it “evil”. Lol! I’m kidding! (Kind of) I do have anxiety about it though.

Some days it is an overwhelming all consuming feeling.

The move involves many different things for all of us. AND Packing! I am working on my resume and that is freaking me out!! I am attempting a writer/blogger resume. It makes me nervous, but I do not see how I am going to be able to work out of the home just yet. Possibly I will be fine working part-time — I am not sure though. I haven’t worked in so long it is frightening (an anxious feeling not scared) to think about. My thoughts have been consumed with all of this because it is becoming real. I have managed to make it erase from my thoughts over and over again, but many things have transpired last week and this weekend to make it very real.

Awwwwwwwwww!! I am going to miss the beach!!!

Sorry I had to shout that because it was taking over my brain. I don’t want to talk about this anymore I am getting sad, excited, scared, and happy all at the same time. Overload-loop-overload-loop-loop-loop-blip-loop. All better, let’s talk about how it has been proven that I am indeed the reason for my “creepy” loving sister’s passion for what my mom considers creepy. She shared with my mom in intricate detail about her eighth birthday which she considers a pivotal moment in her life. There were many, many things going on in our life during that time. It seems as though I gave her “The Nightmare Before Christmas” movie. That would be me — yes I saw no problem with giving an eight year old a movie like that. The rating is PG I still think it’s ok. My mom is sensitive to images and movies like what Tim Burton creates.

She has been “passionate” about it and things like it ever since.

I have pictures below of some of her collections. I also introduced her to Teenage Mutant Ninja Turtles. My favorite was Raphael. So OK! I take some responsibility for her love of darky creepy type of things, but I never told her to go get a tattoo of the skeleton. I have no tattoos on my body. I am too freaky about any equipment touching my body that has touched another human being. You can ask my doctors about that one. Good times. She also has a cute little Chihuahua named Chico. I had to get a few pictures of him too. There I think I feel better…at least I stopped my near “OMG! EVERYTHING IS CHANGING AND I HAVE NO CONTROL OVER ANYTHING MELTDOWN”. Much better. Interesting at my mom’s house were a ton of sparrows. They were flying all around her roof, and to the trees across the street. I tried to get good shots, but to no avail. I put in my mom’s painting she is working on. Shh!

[Show as slideshow]

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02/26/12

Meltdown Mornings Turned To Productive Days

This past week everyone was off. All three of the kids were having their moments. Normally Ariel is quite calm, and able to get upset, stomp off to her room for a little quiet reading time, and relax. It normally works for her. It did work for the most part this week, but her temper was flaring. She got very upset at how Joshua spoke to her, and had random and sudden mood swings. Joshua was exhausted all week. I am not sure why. He was tired, cranky, speaking aggressively, not speaking and thinking that he had. He was then getting upset with all of us because we didn’t do what he wanted or answer him. Many times he did not tell us what he wanted. He got frustrated with Daniel and yelled at him on several occasions. He yelled at me. Then would shutdown completely. However, his spurt of anger would lead Daniel into a spurt of anger because Daniel was confused.

It didn’t help that I was confused too.

Joshua will usually go to his room on his own when he is like this. He knows that he needs to calm down. He did not this week, I had to tell him to go to his room on several occasions so he could calm down and we could talk. In the meantime I was trying to stop a complete meltdown from Daniel, or right in the middle of a wrestling match with him. And also trying to save his favorite toys because for some reason he wants to destroy the things he loves when he is angry. Then, thinks we should replace it after all has settled. Anyway… This was all out of the norm to have it happen every single morning this week with Joshua. He is normally a calm little guy, he is loud, authoritative speaking, and “right” all the time, but he is a gentle, sensitive, compassionate, and loving little guy. It was very much out of character. It was for Ariel too, she does correct the boys a lot, but this week it was off the charts and felt dictatorial though she did not mean it that way at all.

Everyone was confused by the others words and actions.

When Daniel is confused about social dynamics it is very hard to get him back to a calm state. He thinks that he has done something wrong, but he does not know what or why. He gets very upset because he feels like he hurt someone, or they hurt him on purpose. So familiar…I think helping him has helped me a great deal to see and understand this in myself. I just want to add how funny I think it is that every time I am learning a lesson about myself it seems to come in many different scenarios, for social confusion this week FB helped give me a nice dose, then it gave resources to clear it up. I had people in real life confuse me completely with their words, and had to work through that. I had the kids go through it this week everyday. AND I found out that the autism symposium I have gone to for the past couple of years is all devoted to ASD and social vulnerabilities, effective ways to help with social skills, and research, those are a few.

I will be going by myself, and I am feeling pretty good about it. (For now, anxiety will come later.)

How was I able to bounce back and actually accomplish school this week? The grace of God. I tend to shutdown after mornings filled with meltdowns. I allowed myself a little downtime, and then went back to it. No one wanted to do school this week. We were all spent after the mornings, but we had to do school. I decided to do school after lunch instead of the mornings. Some days we didn’t start until 2 pm. We managed to pack full school days into a couple of hours. Why? Because that is how we work. I do this a lot, I have days when I can consume large amounts of information and apply it rapidly. Other days I consume the information and it takes days, weeks, months, even years for me to see a connection, or apply it. It all clicked for me this week and it clicked for the kids. How did I win them over?

A mechanical bird and clocks!

We went over the story The Nightingale and we learned all about clocks. The idea came to me because we are using a book that goes through composers for each era. You read about them and it has a CD with a song from them so you listen to the music as well. (I use much more than the one song.) One composer we learned about was (Franz) Joseph Haydn when I saw the title “The Clock” (shortened) I thought that was it we will learn all about clocks, time, and some math concept. I decided to teach on symmetry because I could use a clock to show symmetry. It worked! Everyone got involved and we had a great time listening to music, writing poems, talking about how clocks work and learning how to tell time. I have been working on telling time with them for a while it finally clicked. They know how to tell time on a digital clock, but it didn’t make sense on an analog. I still have a hard time with that at times, I don’t know why.

Every day after meltdown madness, I reminded them that we were talking about clocks.

I would tell them about a cool new video I found, or a clock craft, or music, or an opera about The Nightingale, or poems that had clocks. Hickory Dickory Dock was able to deter a miscommunication meltdown one day. I felt like I had not really accomplished a lot because the days were shorter. However, after I wrote down some of the things we did and put up the links on my home school blog I realized that we accomplished a lot. We had a large amount of multisensory learning going on. I tend to forget that we all learn better using multisensory when I take a look at assessments, or typical school schedules. My guys do not thrive in that type of environment. A really great thing was that the kids did get along better after school. They have continued to have their moments, but overall it has been much better after school. I think all of this may be delayed responses to the full social week we had during the week of Valentines Day.

Now that I write all of this I think it may be why I am feeling a little down.

Could be that I am tired and I haven’t even realized it. Lol! I have a mind block to all of the things I do. It never feels like I have done enough or accomplished enough in a day. Why do I have to sleep? I got a lot of things to do! Like come up with another plan to take over the world. Oh, wait. I am the other one “I think so, Brain, but this time *you* put the trousers on the chimp.” Seriously, I am able to notice all that the kids accomplish, but I tend to think they achieved it all on their own. OH! And guess what? Daniel is completely potty trained! In the past month he has worn big boy undies all day and all night. He has done such a great job and didn’t get discouraged when he had an accident one night. That could have started us back to the beginning of potty training, thankfully it did not. (I am still a booty wiper for all three of my sensory sensitive kiddies though.) So now I will brag a little because they are my rock stars.

Here are some of their awesome accomplishments on our Home School Journal.

I have discovered that we learn very quickly, with more comprehension, and ability to apply things when it is all connected somehow. It’s the way I learn, and it’s my teaching style it works for us. When I separate subjects it doesn’t flow. I guess my guys learn the same way I do. Regular school was never for me and caused me constant meltdowns/shutdowns. If only someone knew this about me back then…at least I know this for my kids. I failed to mention that none of them wanted to do school until I came up with fun ideas and visuals for the topics. Here are few videos that helped pull us into a school focus.

A Clock Story

The Clock

Poetry in Motion • The Clock of Life

Yea! We had a productive week even though it didn’t feel like it.

P.S. My last FB post really released from my issues. I decided that I do not need to be affected by other people’s issues on social networks. I will use it happily for my purposes and let them happily use it for theirs. Yea! I finally get FB…How old am I? Ha ha ha

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02/24/12

Confusion. Great It’s Not Going Anywhere

It is always fun and exciting when you have uncovered a lie that you have convinced yourself of. (I stated that with a sarcastic tone and possibly a British accent because I am speaking in a British accent today in honor of Sherlock Holmes.) Wow! My silliness is really coming out lately. What lie has been unraveled before my eyes? Well…I had tricked myself somehow into believing that my social confusion was going to disappear at some point. Unknown to myself the “mini-me” living inside had kept the secret that it was not going anywhere. Possibly I told mini-me to be quiet. The “main-me” had continued to gather data, and information. I continued to study people and behaviors, thinking I was getting somewhere.

Actually I have gained a lot of understanding.

I do not want to dismiss all of the work I have done and what I have applied. However, I fooled myself into thinking that one day it would finally click. It wasn’t until several encounters this week both online and in real life that made me realize that my social confusion is a part of me. It is going to stay a part of me. I have gotten better in some areas, but still I get confused and have to ask questions. It is another thing that I need to accept about myself so I can move on. It was kind of hard to accept though. I do not know why. I asked my mom last night: “Did you already accept that you are going to be socially confused for the rest of your life?” She looked at me with a “Duh” kind of face and said: “Well, yes.” I was speechless.

Only for a second of course.

What? How did she realize this and come to peace with it? My mom seemed to have everything fall into place for her after she read a couple of books about Aspergers, websites, and several blogs I sent her. All of her missing pieces connected and she accepted herself fully. It finally gave her answers that she had been needing for so many years, and she was settled. I have not had that easy of a transition. I accepted many things, felt at peace and got answers, but it was on the service. I had been pretending to be someone else for so long that I wasn’t even sure what I looked like. I couldn’t decipher who was Angel and who was “Faux Angel”. In my transition of accepting myself and all of my ways I continue to reveal things that need to be accepted.

Today I accept my social confusion.

What does that mean? It means that I can only be around, and have relationships with people who I can trust. I need people who will support me and understand that this is part of me. I need people who will not get frustrated, annoyed, or angry with me when I do not understand. I need people who will accept that at certain times or in certain social situations my mind is very much like a child. Also, at other times I may completely understand the social dynamic. There is no rhyme or reason. I can know something one day and the next not have a clue. I need people who love and support me even when I am clueless. I also need them to remind me that I am still intelligent and not wrong just because I do not understand what someone means by what they said, or did.

I am not exactly sure why, but I am getting teary eyed as I write this.

I am kind of overwhelmed with my experiences of being ridiculed, or put down because of my social confusion. I am having many flashes in my head where I said the absolute wrong thing and upset people, but didn’t understand why it was wrong. There are times where I said something and made people angry, or they laughed at me and I did not know why. I have other times when they said things to me that I completely misunderstood, and had no idea how to process. (These events still occur today, but I am having a rush of my past play like a movie.) Accepting social confusion for me is washing off those words, and experiences. It is giving me freedom from mistakes I made that I have continually relived beating myself up for hurting another human being. It is giving me freedom from the harsh words spoken to me. Great. Now I am crying completely! BLAH! I don’t like crying.

There are so many factors that play into social confusion.

It is not only being confused socially. The social confusion can be heightened do to many other things. I understand and see this in my children. In many ways the kids are well beyond social understanding than I am. I understand a child’s world though — I understand many dynamics in that social setting because they are still at the age where it’s simple. I think this has been one of my fears about them getting older and me feeling like I will not be able to relate. It isn’t that I will not relate to my children it is that I do not know how to help them when they are teenagers. I didn’t know how to handle it when I was a teenager and I have not learned much to date. I see that many adults continue to operate in that social paradigm, only “sometimes” less dramatic or emotionally enhanced.

It is still all foreign to me.

The good news is that now I have tons of resources to use, or lead them to so I know that they will be fine. We will figure it out and they can giggle and poke fun at their clueless mom. Not in a mean way, you know. It’s like when my mom is clueless and I call her on it, we laugh. She does the same thing to me — it’s funny. I got a little emotional in the middle of this so I may have run off and gotten distracted. The purpose of this post was for me to solidify my acceptance of my social confusion. Also to share with others in case they had not accepted it as well. It is hard to remember that autistic adults go through the same social confusion as kids. It is very hard to remember when the adult is able to speak well, work, go to school, have a social life, be a parent, contribute to the community, etc… It is very easy to forget the struggles, or believe we do not have them. Most of the time we have just learned how to hide them better.

It takes a lot sometimes to go out and be social knowing full well you are going to still be confused.

Thanks to Lisa at Alienhippy she posted several links and images that helped me a great deal. They are on her other blog Missing Jigsaws & Excess Lego. I am going to share some of the images on here they are from Autism Discussion Page, which is an excellent and very helpful resource page. Here are links she shared as well that I thought were very helpful. Sorry the images got mixed up and are not in order. I do not have time to fix it now. Maybe later.

FRAGILE WORLD ON THE SPECTRUM

Asperger Syndrome or High-Functioning Autism?

OH! I just read this and thought it was good. It has nothing to do with autism, but it could help the autistic mind. Mine anyway. Sharing. The Mindful Self-Express (added very quickly now I must go)

[Show as slideshow]

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02/14/12

Good Times At The Movies

Finally! Mom and I got to go to see the movie The Artist. I know, I know I have been talking about it a lot. I REALLY wanted to take my mom, and I REALLY wanted to see it too. It surpassed all expectations for me. I cannot express how awesome it was. The details that were filtered throughout were incredible. Mom and I both wondered how many people caught them. Some of them were faintly embedded while others were so blatant that it could be missed because it seemed to blend right in. I am not giving anything way.

The storyline was fabulous.

The actors were wonderful, I could not take my eyes off of the screen except or a few parts where it was spinning. My vertigo was getting triggered. There was also a scene with close-ups of mouths that freaked me out and I could not look at that. It was an added detail though that made the movie brilliant. I just have a thing about mouths being all up in my face. Actually I have issues with people’s mouths anyway I try not to look too long at them because it freaks me out. Lol! My mom watches mostly black-and-white films. She does not venture far from her oldies movie channel. She does enjoy other movies — she has gone and does go to the movies with my sisters often.

They like chick flicks, and romantic comedies, and stuff like that.

It is very amusing for my mom to like romantic comedies nowadays because she flat out says she does not understand “love”. I am not sure her reasoning for liking the flicks, she says she just likes them, but my sisters have to explain why people are acting a certain way, looking at each other a certain way, or she is surprised to discover that the main characters in fact are in love. They get quite annoyed with it. I can do the same thing with movies, and shows. I can watch it and have no idea what is going on with the social situation. I tend ask questions a lot with social dynamics.

Maybe that is why I like odd movies or tragic love stories, I understand those. Ha ha ha

Anyway it was halfway through the movie and my mom leans over and said: “Oh, this is black-and-white” I started laughing. She then got excited because other people were watching a black-and-white movie with her. She sees black-and-white movies in color. She describes everything she sees in those films and I must say her colors sound much better than the colorized versions of some old films. She does not like them colorized, she finds it offensive. Hee hee She asked me questions about what the characters were doing too. She didn’t understand some of the facial expressions, but she knew most of them. I did not understand one time, I wasn’t sure if George was upset, overwhelmed, confused, mom said that he was upset because he felt like Peppy was giving him charity.

He felt worthless.

She had helped him out of caring for him, but he didn’t know that. My mom asked me if George and Peppy liked each other. She couldn’t tell what their feelings were. I said: “Yes, they loved each other.” It made me doubt my interpretation, and I had to scan over the movie in my mind. This is kind of a pivotal thing I need to grasp, if others do not see or feel what I feel I assume that I am wrong. I especially, do this with love. I have been surrounded with people my whole life who have told me that I am wrong about how people feel about me, or that I am wrong about emotions. However, I later discover that I was right on many occasions. It can confuse me, and cause me to doubt myself very much. Back to the movie. The great thing about this story was that they made you feel true affinity. The connection was there, the affections were displayed and it was done in a tasteful most endearing way. I liked that a lot, I understood without a whole bunch of dialog confusing it for me. It made me smile. Both of the actors I thought were just beautiful.

I enjoyed both of their charm.

It was funny when I was explaining the relationship between the characters to my mom. I was explaining affinity, and the connection that they had. She finally said:”Oh, I get what you are saying. I just don’t get IT.” She was scanning through all of her relationships and could not think of one person she had that connection to. I have only felt it once, I am not sure if others feel it more than once or not. It was an interesting moment though. I looked at my mom and she seemed indifferent. She did not feel like she had missed out on that connection, you can’t miss what you have never felt and do not comprehend. I understand what she means I call it my “blankness” where I really have no connection to something, or comprehension of it. It is not that I am blank — I just cannot pull up anything in my data to compare it to. Does that make sense? I think mine is more about how people express them not so much that I do not get it.

No, no that is not true sometimes I am completely clueless.

I get it if I have a direct connection to it. I get it if I am able to take a scene from my own life and apply it to the situation. Otherwise, I am just like mom in being unable to “get it”. Both of us came to the conclusion that we both understood the majority of the film, and enjoyed it because there was no confusing dialog. Their faces were animated and expressed their emotion without unnecessary words. Their faces matched what was being expressed. The thing that confuses us the most in film and real life is the inconsistency between words and facial expressions. People have a happy face while giving hidden messages through their words, body language, tone, and all of that is confusing. We do not know what or how to read that. The movie was clear, direct, and silent so there was not the usual large amount of the background noise to filter through.

When we walked out of the theater we noticed how calm we were.

Normally, I am so overloaded after a movie that I dash out of there. I did not know in the past what all of the visuals before the movie did to me, and I did not know that all of the sounds, smells, and people affected my sensory. I would feel incredibly stimulated and excited for a few hours, and then I would crash and feel like I got stampede by a bunch of rhinoceros. Mom and I both were very excited after the movie and could not stop talking about it. We were asking each other questions like: “Did you see that one thing?” or “How awesome was that scene with the glass?” or “Oh, my that was an awesome shot!”

We both were amazed at how calm and happy were.

The normal response is “Let’s get home as soon as possible.” A major factor here as well is that my mom had one of the worst days. Her workday went wrong from the time she got there until she left. She said she should have had several meltdowns, but she did not. She kept telling herself that she was going to see this movie and she only needed to make to 1pm and get out of there. She was not a happy camper when she arrived here, but she was trying very hard. The movie lifted her spirits and gave her a lot of smiles. Me too.

The music was awesome!

I truly enjoyed listening to music while watching the movie. I did get all excited and was soft clapping, bouncing in my chair, swinging my legs, and squeezing myself tightly sometimes throughout the film. It just made me so happy. We both had the loudest laugh in the theater. It was not crowded, and it was an older crowd so that made it calm. I did not take my coat or scarf off the whole time. I was wrapped in my black fake fur, fuzzy coat that I have had for about 10 years now. I love it too much, and it is like a security blanket or something. I was freezing, while my mom was very hot. It was funny — my mom is normally freezing like me.

I am babbling.

I do not want to give anything away, but I have to share this story because it is so funny. There was a scene where George is going to kill himself — Peppy is racing in the car to get to him. She cannot drive and she is weaving and swerving all over the place. She ends up hitting a tree, but before you see that the screen has the word “BANG!” fill the screen. As mom and I drove home talking about the movie, our social skills, (lack of) and how it would be so much better if everyone would just pretend that we were in a silent film, my mom said: ‘Oh, look the color of their car matches their house.” I look up to see (I was fidgeting with something and not paying attention.) the medium that we were about to hit, and the only word that flew out of my mouth was: “Mama!” She looked forward swerved out of the way and parked the car.

We could not stop laughing.

I haven’t called her mama since I was a child — I don’t know where that came from. It caught her attention though and she did not run into the medium. My sisters get so upset with her for doing things like that. She has not been in a collision with a car, (collisions with other things yes.) but she is always getting sidetracked with things like that. Watch out if she sees an airplane the world stops. We both thought of the movie, and she said well at least we didn’t hear “BANG!” We both lost it again laughing until our bellies hurt because both of us saw the picture in our head at the same time of the word from the movie. It struck us funny that we both did it at the same time. We want to go see the movie again. I am so glad that we got to experience it. It felt good to feel “normal” in a movie for once, and to feel “normal” afterward as well.

I did get on a happy high, and then crashed, but I am doing pretty well this morning.

Except feeling a little awkward for sharing some of the silliness from my mind with someone, sometimes I need to think a little longer before sharing. BLAH! I guess this awkwardness too shall pass with that particular situation….Barn Wedding tonight! Lol! Another random thing from my brain. Google’s Doodle is awesomely-perfectly-wonderfully-stupendous today. Yea! Google Valentine! I will take jump roping any day and that valentine.

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01/29/12

Llama Llama Llama Llama Llama

The title is from an Animaniacs cartoon I watched years ago, I actually watched it again this morning with the kids. The title of this particular toon is “Wally Llama”. Here is an episode summary:

(Yakko, Wakko, and Dot Short) ”Wally Llama who lives on top of a mountain in the Himalayas is the wisest creature in the world. After he grows sick of answering questions he vows to stop for the rest of the day. The Warners arrive and pester him to answer one question. Eventually he gives in, but when he hears the question he goes crazy because he cannot figure out the answer. The question is why do hot dogs come in packages of ten, and hot dog buns come in packages of eight?

There are numerous reasons why I relate very much to this episode.

One being the question that the Animaniacs ask at the end “Why do hot dogs come in packages of ten, and hot dog buns come in packages of eight?” This is the type of question that I get all day long from my own little Animaniacs, but sometimes it is a bit too much. The main reason why I chose to talk about this today is because I took Wally Llama’s coping skills as my own years ago after watching the episode. I was a supervisor in a stressful job, living in a stressful environment and when I would get overwhelmed I would close my eyes, plop down on the floor, (I did not care if it was the middle of the store or if I crossed my legs in a chair in the middle of a restaurant.) place my hands up, and repeat “Llama, llama, llama, llama, llama” Yes, I did. I would not always plop down, but I would hold my hands up in meditation position, close my eyes, and repeat llama.

Most people would laugh and that would help me laugh.

Once I started laughing I was able to cope. This week has been a bit rough at times and our 2319! Plan has not been working. I was at my wits end with the boys the other day because they are having such miscommunication that it is was causing some serious meltdowns. I was getting so frustrated at not knowing how to deal with it that out of desperation I said: “Come on boys sit down criss cross applesauce. Let’s close our eyes, put our hands up like in Yoga, and you say what Mommy says.” I then said: “Llama” over and over and they said it with me within a few minutes we were all laughing and calm. After that, we were able to talk calmly about what had happened and everything was cleared up.

I have been doing it for days now.

It is working! (For the moment.) I can only find the clip of Wally Llama in Spanish which makes it sound even better. We purchased the episode off of iTunes. This week has been a huge week of progress as well… so I am not surprised by the meltdowns. All three of them have been practicing their handwriting, which is extremely stressful for them. They all have to use a lot of concentration and effort to practice writing, but they are doing so awesome. I started the Autism & Reading Comprehension this week as well and the boys are doing great! I was very surprised at how much Daniel does comprehend I shouldn’t be. All three of them comprehend, but they all three also show their comprehension through different ways. Ariel is way beyond in her reading and comprehension although — she is still enjoying doing the lessons with the boys. I really like the book and the lessons being laid out. I have to constantly try new things with the boys to keep them focused on reading.

Ariel reads all the time.

Daniel likes to read, but he can forget words. If I do not continually stick to a reading program he will lose interest and the words that he has learned. We then have to start all over again, not for all words, but the bigger ones. This also can be quite taxing on them, and cause meltdowns. They are doing great at many of the math concepts, but need more work with subtraction. I decided to focus on subtraction this week as well. I think that may have been a bit too much to add while starting something new with reading this week. Even though they are doing well with subtraction — I did not think through all of the new things that were happening this week…for all of us.

I get kind of freaky when I know that their evaluations are coming quickly.

I have several months, but I go in hyper-drive at times wanting to make sure they are at level and learning everything they need to be learning. AND I think that is why my mind pulled out Wally Llama. I need to make sure that I am not pushing too much. These guys are above-average in many of their academics and are constantly asking questions. It is so easy to miss the progress and things that are accomplished sitting right in front of you when you are constantly focused on the things you feel need to still be accomplished. I need to sit back and appreciate how much these guys know, and enjoy the way each of them see the world in such awesome and unique ways. I also found some Yoga DVD’s for kids that have been fun for us. We started them about two weeks ago. That is probably what triggered Wally Llama for me.

Maybe you would like to try it too, let me tell you sitting down and repeating “Llama” over and over can be quite amusing.

Here are the Yoga videos I am using with the kids.

YogaKids

Junior Yoga by Annette Lefterow (They are not as “enthused” with this one.)

AND I thought this was worth sharing as well. Everything You Thought You Knew About Learning Is Wrong

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Mind Retrofit

Upgrading to the Asperger's Life

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