Tag Archives: autism

10/8/12

A Bit Overwhelming

I have been fighting depressive feelings for a few days. On Saturday, I received a text from my dad that they were in town and “Would we like some visitors?” I did not see the text until way later in the afternoon and by that time, it was too late. I had already had plans to take the kids to church so I opted to go and we would see them the next day as planned. They were in for a half marathon that my dad and several other family members were racing in.

During church, I decided that it would be a good idea to go over to my aunts.

It is never a pop in on her and I called an hour ahead of time. I determined that the kids were in a good place, gauging their sensory and social overloadedness. (Mine too.) I weighed out the thoughts, would it be better to go there on Saturday night for a little while when everyone was there and help eliminate any anxiety for the next day? Or should we just go home? I decided that I was having too much anxiety and that it would be beneficial for all of us to go that night before the long Sunday family adventure. There were a few family members that the kids and I have not seen in over five years.

We went and it was a very pleasant evening.

We only stayed for about an hour, which was long enough, and we headed home. The kids did fantastic. Daniel did his usual walk the perimeter, count the echoes in each corner of the rooms by clapping, and asking me a ton of questions about the particulars of the house and why it was made like that. We got home and as wound up as they were I was amazed that everyone went to bed on time and Daniel even fell asleep right away. Amazing!

We went the next day and it was a wonderful day.

I had so much fun with my family. I really did. I enjoyed myself I laughed; I felt free enough to be myself. Everyone was accepting of Daniel and enjoyed all of the kids. My family is so silly. We get all kinds of goofy, some of it I do not understand, but yesterday I had a different attitude towards it. For the first time I really felt everyone trying to love me and accept me as well as my family. It is funny because the day before I had gotten a little upset with the texting and the “pop in” thing. I know that it is hard to remember for them because that is what they have done for years. They show up when they can and usually call when they are on the road or something.

I am not used to that and our family cannot do it.

We need some advance notice. I felt so good about everything. The kids were not overloaded at all and they did a great job with school today also. So awesome! However, today was my doctor’s appointment and as much as I am trying to soak in all of that goodness, I cannot help but feel overwhelmed and frightened at times. It was already a lot for me to go to the woman parts doctor. I have not gone alone in over a decade. Today I went alone I was proud of that, but as I sat in the office waiting the anxiety took over and I held back the tears the whole time.

The room was dizzy, the lights bothered me, the people were loud, the chair was uncomfortable, and I was waiting too long.

Finally, I was called in – I kept breathing slowly. I answered all of the questions the nurse asked. Of course, the scale did not work when I got on it. This strange stuff always happens to me. She said, “Well I do not know why it is not working. It never does this.” I laughed and thought to myself, typical. She did manage to get it to work; I found it odd that they only have a digital scale in such a fancy smancy doctor’s office. She took me to the room and I waited. I looked at everything in the room; it was all gray and beige, but loud.

The carpet squiggles were loud and dancing.

The wallpaper was dull and the patterns boring, but it felt as if it were attacking my ears. I looked at the stirrups and started to panic. I looked at the stuff all over the cabinet and the bright hazardous sign. I wanted to cry, I wanted to leave, and I started to feel really scared when I realized that I was going to be alone with the doctor. I felt me lose my words, and I wanted to cry out for a nurse to stay with me. After he came, I felt more comfortable. He was a very calming doctor. I did not feel unsafe.

He talked to me and asked me questions about any issues I had.

I told him and then, left so I could get undressed for the exam. I think he could tell that I was extremely anxious. He started the breast exam and talked to me the whole time asking me questions. He then, examined the rest of me and now I will share the parts that keep making me cry because I feel as if it is a lot, but then, I start to have thoughts that I am overreacting. First, he found a mass in my left breast. I was not expecting that at all. I assumed that any problems I had with it was because of Daniel. He tore my left nipple from breast-feeding. It healed fine you cannot even tell anything happened on the outside.

I have not thought about it again.

The doctor was concerned and now I am having a diagnostic mammogram. It still could be nothing; I am more shocked by the surprise then anything. It is still scary. Next, he said, “Oh! You have a sore it is like a laceration on the left side of your uterus. I have never seen anything like it.” Of course, this happens when I go to the doctor, and the dentist they have never seen what I have or it is an unexplained illness… I have not shared about my teeth. I will one day, after I go back to the dentist. He was concerned that something terrible had happened to me. I made it clear nothing has happened to me and I reassured him that nothing has been going on down in those parts for well over a year, or longer. I do not keep track of that stuff. Too much info? Sorry.

So here it is, he thinks that I have polyps or cysts, and some strange sore that needs to be looked at.

Oh, and he is pretty confident that I have endometriosis. Yeah, so I am going to have an ultrasound as well and some other types of tests done. I cannot remember now. It was too much to take in. My mind was consumed with the cost and how we do not have money for all of this, but that I have to go because now we are dealing with serious stuff. Yes, maybe cancer.  The good news is that he said the laceration did not feel like a hard mass and he did not believe it was cancerous. Still we are waiting for my Pap smear results and will wait for the other things as well to see what is going on.

I asked him how I could have gotten the laceration.

He had no explanation, other than it was possibly from childbirth. Ok. On my way out, I held back the tears and was practically running to my car. I confess these were the words I said, “God if you gave me cancer I am going to be so f-ing mad at you.” I did say f-ing and not the actual f-word because I would have had too much guilt. :-) I was supposed to go to the store before I came home. I could not. I was sobbing the whole way and probably should not have been driving, but I needed to get home to my babies. I came home and through tears told David what had happened.

He does not know how to comfort me so he did not, other than suggest I call my aunt.

He did try to make me laugh and succeeded several times. He said, “It could have been worse.” (He sent me that video to watch.) He did go into “find funds” mode though. So he started talking about all of the possible scenarios, to me it sounded like he was saying that I cannot go to my other appointments. He was not saying that. I do not know how to explain it, he has to think and say all of the worst possible outcomes to settle things for him. It can cause me to panic and have anxiety. He did try really hard, but his focus was on thinking of the money since I am not covered on his insurance. It adds additional stress and guilt on me even though I know I have no control over it. I still feel bad because I do not have money for this and oh, goodness, it is stressful. I have no control and cannot even pay to have insurance and I do not qualify for help.

I need to stop thinking like that.

Anyway, I am putting this out there because I do not know what else to do. I need to share. I need to stop my negative thoughts. I am still overwhelmed; I may be for several days. I am so thankful that I do have my aunt. She is taking me to my next appointments and will be with me. She helped bring some peace. She has been through several of these things as well so she can empathize. She is also a major bad ass and will not allow me to shutdown and cut off the world like I so much want to do right now. Because of her, I am sharing this and I will share the diagnosis and whatever else comes up. I know that others may be afraid too because of similar issues or maybe for other issues.

We can be afraid together and know that we are not alone.

I will leave with some wonderful happy pictures of me and my family who think that it is fun to hug me when I tell them I hate hugs! Ha ha ha Honestly, yesterday the hugs did not hurt and I was comfortable enough to give them and receive them. It was a very good day.

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10/6/12

Embracing Oneness & A Mix Tape

If you have seen my facebook page today, I apologize for being quite obsessive with sharing this video… I did share on one of my other blogs too. I cannot help it; I think it is that good! I have listened to it four times now. Here is the video.

I venture to guess that many of us on the autism spectrum can relate to her definition of “otherness.” The feelings that she expressed feel very similar. The personal attacks she placed on herself as well as the walls she started to build as protection from society, (though she did not describe it like that it is my interpretation) are very reminiscent to familiar emotions and actions for me.

She said, “I was a noticeable nobody.” 

I cannot put into words what that did to me when I heard it the first time, the second time it became more real, the third time it pierced every fiber of me. I just listened to it for the fourth time and I feel all scratched up on the inside, but I also feel great relief and hope. There is so much packed into this talk, I would like to dissect it, but I do not have the time now.

I was so excited as she described the way she dances.

Her use of words described how I feel when I dance. As she described it she said, ” – that nagging dread sense of selfhood didn’t exist when I was dancing. I’d literally lose myself and I was a really good dancer. I would put all of my emotional expression into my dancing. I could be in the movement in a way that I wasn’t able to be in my real life, in myself.”

I believe this is why I close my eyes when I dance and sing.

I also feel this as well when writing my poems or stories. I am able to express what I cannot not in real life. I am able to write out the words that have hurt me, made me feel loved, that excite me, etc… I cannot say them, I have not known “myself,” but my expression of dance, words, and music has always been glimpses and expressions of me. She speaks of her first acting role and the peace she felt when she was acting. Her words were, “My dysfunctional self could actually plug in to another self, not my own and it felt so good. It was the first time I existed inside a fully functioning self. One that I controlled, that I steered, that I gave life to, but the shooting day would end and I would return to my gnarly awkward self.” 

Acting and mimicking has been my sources of survival in this world.

However, I always felt like a phony and a fraud. I always failed at keeping up the character and I would forget who I was supposed to be. I did not know who I was, but I knew I could not be the person that I felt like being because people rejected that person. I had to become someone, else. There is so much in her words that I wish I could elaborate on. I think she gives some wonderful words to ponder at the end integrating oneness and what it will take from us as humans to achieve that. ”Simple awareness is where it begins.” I need to process some more anyway. I need to learn how to embrace my otherness and myself around all types of people. I am, but I need to be reminded as well.

I know that when I write I feel as if I finally exist.

When I dance, I feel a part of something, when poems come out of me I feel as if I belong. My words confirm my existence because many times other people make my existence feel negated. (Unless I am a character playing a role.) I have been slowly coming into full existence by allowing myself to write freely. I have forced myself to step out and challenge my stories and my poems. I am bringing all forms of me into existence. I had no idea what I was doing, but by doing this I have caused myself to feel stronger in the “real” world as well. My voice has become stronger. My confusions have been made known. My hurts have been expressed.

I have also been able to determine what I like and do not like, on my own.

This new self is not forming out of fear, or survival it is forming out of truth and the acceptance of existence. Still I linger in depression. I feel overwhelmed and wonder some days if any of this is worth it. In the end, I think it is, but sometimes I get so tired of doing this alone. (Not virtually alone, thank you my internet friends.) A big sigh… nights such as last night made me contemplate any purpose of my existence. (I am glad I found this video today.) I literally wondered what the point of me being here is. I could not find any real purpose. I managed to convince myself that anyone could take up the air such as I do.

I decided that it truly does not matter if I am here or not.

Not in a suicidal way of thinking, it was a matter-of-fact feeling of one not being of any significance. Then, I thought of the moon and I figured he might miss me so I should stick around a bit. I am sure other people feel this often enough. It most likely happens a lot when a person is in self-discovery mode. I do not think that these thoughts should be hidden away or cause fear.

I think they should be expressed and talked about.

The best weapon depression and isolation have is silence. So I am embracing that oneness of my “dark” side. It actually possesses a lot of light, still it can be a painful thing, but it has worth. The great thing about my thoughts such as these is that they are quickly eaten away with music. On my store adventures last night, I heard a wide range of music. The songs made me laugh, made me cry, made me dance, and forced out negativity. I will share what I heard because it will help me remember my emotions from last night and today.

Mix Tape Oneness: Random Tunes From The Radio October 6th, 2012

(I did not listen to the whole song on some of these, but maybe others will enjoy them. The thing I find amusing is that I know the songs even if I did not listen to the whole thing, or they were songs from my past and I still remember every lyric. I only heard the last five seconds of The Thunder Rolls Garth Brooks.)

Enter car.

1) Metallica - Enter Sandman 

A rude song came on so I pushed scan…Driving to the first store.

2) Casting Crowns Praise You In The Storm

3) Alex Clare - Too Close

I think I got annoyed with the radio stations at this point besides I was at the store and went in.

I am almost certain I caught the end of this next song.

4) Kings Of Leon - Use Somebody

5) Come Together- The Beatles

6) Death Cab For Cutie I Will Follow You Into The Dark

I am adding number eight even though it was not on the radio because it is currently the kids favorite song and they go around singing it all the time. I also need to go make lunch. Whoop! Whoop! Oh, I will sneak this one in 7) I Know You Want Me - Pitbull it was the last one I heard in the car. I had the music up so loud that Daniel came into the garage and caught me dancing in the car. All the kids came out and then, requested to hear the song inside… and I put it on, so we all danced. Ariel really likes the song.

8)

 Happy Saturday! 

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06/3/12

My Spiritual Rant Fest! II

Continued from My Spiritual Rant Fest! I…

This is why I have had such a hard time conforming to certain beliefs, and it caused me a great deal of emotional trauma. Other people did not seem to have this problem and always knew the voice God even when He seemed to always agree with them. When I expressed my questions, my concerns, voiced my opinions I was told I lacked faith, and in some cases just ignored. They seemed to lack of theory of mind for me. They had mindblindness toward people who did not agree with them. They were unable to consider the thoughts, feelings, or emotions of those who have different beliefs. Is that lack of empathy? Are they truly mentalizing?

I am teaching the kids to be mindful of others and respecting their beliefs.

We are mentalizing in our way. By definition mentalizing is:

“Mentalizing refers to our ability to read the mental states of other agents and engages many neural processes. The brain’s mirror system allows us to share the emotions of others. Through perspective taking, we can infer what a person currently believes about the world given their point of view. Finally, the human brain has the unique ability to represent the mental states of the self and the other and the relationship between these mental states, making possible the communication of ideas.”

We are trying to gain an understanding toward others.

We look for commonalities so we can share in the togetherness of humanity. I think that it takes us a longer time to process mentalization in some cases, but I believe we all do it. Speaking for myself a component of confusion for me and what throws me is when I feel people’s true emotions and their words, or smiles do not match. What I have seen throughout my internet adventures reading a ton of blogs or websites from autistics are, when they realize that they have not considered another person’s point of view, it is like a wake up jolt, and they begin to try to walk in those people’s shoes. They try to gain understanding to some extent. Of course, not all, but many. The reality is every autistic is an individual, with their own thoughts, beliefs, fears, likes, loves, interests, etc… We are humans, and many of us are very open and accepting.

To me that is the concept of God. 

I confess I have always had a hard time personalizing God. When I was a child and people told me about Jesus – it made no sense to me. Once in a while, I was in Sunday school, I do not remember why or who brought me there. I was very young – most likely, it was a holiday or something because we did not go to church regularly. I remember one time being exceptionally scary and devastating for me. The Sunday school teacher drew a picture of a heart, and then, proceeded to tell us that if we sin thorns begin to grow in our heart.

She started to draw black thorns into the heart.

As she went on to explain that the more we sin the more the thorns take over, I became frightened. All I can recall now are her words, “When you tell a lie, or think bad thoughts, thorns start to take over your heart. The more wrong things you do the more these black thorns grow, wrap around your heart until it looks black, and keeps you away from Jesus. He cannot hear your prayers – He cannot come close to you.” (I know I got very close to her words they may not be “exact,” but very close.) I looked at the heart covered with black thorns, and just knew that was my heart. All of the things I had done wrong in my short-lived life consumed my thoughts, and I was never going to be accepted by God. (I gave you the condensed version of the story.)

I knew it was impossible to never do anything wrong. 

I knew that no matter how hard I tried I would still do something wrong. I accepted my fate as being rejected and unacceptable to God, forever. Still that did not make sense either because God was supposed to be all accepting and loving. It has been back and forth battles in my mind about God my entire life. I became settled at one point, but that was because organized religion made it easy by giving me rules.

Until the rules became too inconsistent and ever changing.

Because I had been in so many different churches, I started noticing patterns. When I was going to only one church I would blow them off as my imagination, but the more churches I went to the more I noticed.  I had been obsessively studying for years with all things Biblical and Christian based. These patterns I was noticing linked into politics, social behaviors, emotional responses, and recognizing groupthink. (I didn’t know what it was at the time.) I started to allow myself to ask questions and seek answers from other sources. I am not going to go into all of that right now. I am processing.

I think it is important to keep an open mind in the area of beliefs.

I think that it is an awful thing to point out one group or another and claim they are a certain way based on media, limited information, lack of understanding, and lack of wanting to understand. That goes for any form of reasonable belief. (I do not condone those that are clearly abusive, or like cults.) While I do agree with some of the components of the article, I truly think it could apply to all people. There seem to be many people who are leaving their faith.

Faith as we have known it is morphing into something different. 

As a culture, we are merging into new states of beliefs, understanding, and acceptance. Just like our political system is changing and no one knows what it is going to look like, many of our other systems that have been lingering around are starting to change as well. This was interesting also Some Americans Reluctant to Vote for Mormon, 72-Year-Old Presidential Candidates Our world is changing, people are changing, definitions are changing, and I want to be a part of the change. I see more positive than not. Though at first I was bothered mainly from the title “Does Autism Lead to Atheism?” now I see it as a turning point. It gets people talking. It got me angry, and in that anger, I worked out some pain.

I had a rant fest that has opened doors to other pains I have been putting off for far too long. 

I have been searching for fellow Aspie’s who have experienced trauma growing up in church, or people like myself who came to faith later in life. I have not found many writings about it and for a while I felt like it was only my imaginations. I was influenced by the Christian faith growing up, but they are mixed from Pentecostal, Charismatic, Lutheran, Methodist, Southern Baptist, Non-Denominational… that is all I can think of now.

I researched them all.

I found the openness of worship, and prayer freeing in some churches, but their doctrines and theologies confusing. I found others to have great detailed and in-depth teachings, but stifled in the area of music and prayer and music is a very big deal for me. I am not being shallow it is who I am. Truly, I love all types of music, it wasn’t that really – it was the feel. That is the best way I can explain it. Sidetracked I know.

I have been wanting to find others who understand and know my experiences. 

I have found people who for the most part are not on the autism spectrum, but I would really like to find others who have experienced major confusion, hurt, or any other experiences when it comes to faith. I do not think it is limited to the faith I was surrounded with and I do think we need to share our stories. I am not sure how, maybe just commenting, starting your own blog, or emailing me, I don’t know… I think if they are going to start studying our beliefs we should start talking about them. Maybe express what is good for us and what isn’t. What confuses us and why. Personally, I cannot define my faith into any definition that currently exists. I’ve made this quite long so I’ll end my rant abruptly with resources of course! :-)

I read these great links and have been pondering them for a while. 

Conspiracy Theories, Autism, Fear, and Life on the Crazy Train

Nicole and I had a great conversation through the comment thread and I wanted to keep going, but I do not think either of us have the time to do it. :-)

God Confusion (“I’m an ex-christian with Asperger’s Syndrome.”)

Finding My Ground  (I have been reading this blog for several months. There several posts she has written that I would recommend, but I will leave it up to you.)

The Science of Why We Don’t Believe Science (I threw this one in here because, just because.)

I found this interesting too, click on the image to go to the link.

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04/1/12

Bringing Awareness, I Am Turning Blue (Repost)

I wrote this last year in a flush of being overwhelmed by all of the information and turmoil that sprung from only the first day of Autism Awareness Month. The weeks that led up to the first day of April consumed me with emotion as a mother of an autistic child and as an autistic woman. This year is no different. As a matter-of-fact, I am even more overwhelmed with the heat rising from the announcement “CDC: Autism Rate is Now 1 in 88″.  I cannot even write about my feelings. I will wait until the smoke falls and everyone is able to focus once again on the reality that we need to acknowledge and help children, adults, and parents. We need resources, accurate information, and individual plans to focus on each individual on the autism spectrum.

We need a focus on implementing helps.

At this point there are so many unknown factors that play into the “why’s” or “how’s”. I am not dismissing the importance of doing studies and trying to discover better ways to help, or determine certain factors. The numbers seem to be of little value to families struggling financially, emotionally, physically, and not knowing where to turn. I hope this year we can transition into seeking the answers to help parents understand what autism is. Help them not be afraid of the diagnosis, but in order for that to happen some outlooks need to change. Parents need help in understanding — there is so much information out there and they need direction. Adults coming to terms that they are on the spectrum need acceptance, and help as well.

We need direction.

I hope that awareness, compassion, empathy, and understanding that the label autism is not the same for each of us. We all look and act differently. With the big reveal of the CDC numbers to me, broaden my eyes to see how incredibly diverse Autism is. Even though we are not the same we suffer many similar issues that make us feel isolated. It reveals that we need to take a step back and truly grasp the fact that there is no normal. We are all human beings — no two alike. It is tiresome to see the round and round conversations that do not seem to move or motivate people. At any rate…

We need to be reminded that we are not alone…all of us on the autism spectrum or not.

 

I did clean this up a little but, but I did not edit the message.

We are boys, we are girls, we are men, and we are women. We are diagnosed, un-diagnosed, and self-diagnosed. We are friends, mothers, fathers, sisters, brothers, aunts, uncles, grandparents, employers, and employees. We are artists, geniuses, mechanics, and cashiers. We are living in institutions, boarding schools, college and at home. We are being abused, bullied and outcast. We are being accepted and lifted up.

We are everywhere.

Some of us can speak and it feels like we won’t stop, some of us can speak, but cannot get our words out, some of us cannot speak through the means that is comfortable for others, some of us speak through a song, dance, cry, or scream. We are looking at you right now. We cannot be put in a box and we cannot give complete clarity to all of our differences. We find some comfort in our similarities. We have been here and will be here, more of us will be diagnosed and hopefully get the help we need to give us the best quality of life possible. Bringing awareness does not mean to just think about it for this day or month.

Bringing awareness could be a paradigm shift in the thinking of others.

Awareness according to Wikipedia:

“Awareness is the state or ability to perceive, to feel, or to be conscious of events, objects, or sensory patterns. In this level of consciousness, sense-data can be confirmed by an observer without necessarily implying understanding. More broadly, it is the state or quality of being aware of something. In biological psychology, awareness is defined as a human’s or an animal’s perception and cognitive reaction to a condition or event.”

Awareness defined in the dictionary is:

Awareness
noun
“Awareness of, knowledge of, understanding of, appreciation of, recognition of, attention to, perception of, consciousness of, acquaintance with, enlightenment with, sensibility to, realization of, familiarity with, mindfulness of, cognizance of, sentience of The 1980s brought an awareness of green issues.”

As we go into this month of designated autism awareness, I think about what I would like people to have knowledge of, an ability to perceive, to feel, to be conscious of, when it comes to autism. Actually, there is a lot I would like for people to be aware of but I guess if I were going to stay focused, my main points would be for people to be aware of the fact that we are not all the same. Every person has his or her own unique qualities and hindrances. Though we may have many similarities, there are many differences as well. We each have our own personality and likes. Some may have the similar obsessions with fans or trains but some change their obsessions and often. Social situations can affect us all differently — we may be very social and then have anxiety later. We may be too anxious to go or do anything. We may not even think about it because the social situation involves our special interest.

Our sensory issues manifest in different ways.

Some of us are seekers, some of us are avoiders, and some of us are a mix. Loud noises can tear through our body and jolt us into a panic — the sound of ice can feel like daggers in our ears, while loud music can be comforting. Hot weather can drain us while for others it is energizing, cold weather can stop some of us from being able to move because it hurts our flesh so badly, while some of us can run around in the snow in shorts and think that it is great. There are so many differences between each one of us and that is something that needs to be made aware to the world. There are substantial differences between girls and boys and woman and men on the autism spectrum and I think that is something of importance that should be remembered and considered continually.

There are so many methods of treatment and I think having proper awareness of them is important as well.

There are many things that my mind wants to share but I cannot in a blog post. As I challenge myself to stay focused and make a clear point, I guess out of everything that I would want people to have awareness of when it comes to autism, is acceptance. I would long to see people accept our differences and be aware of them. I would want people to accept our gifts and hindrances not as pity or idolize the giftings but to accept us as we are. Accept challenges and bring forth more awareness to the needs of those who are not receiving the help they need. I am referring to parents, children, and adults on the spectrum. Acceptance that it is ok for parents to be upset, concerned, exhausted, worried, and feeling hopeless but to not accept those feelings as their new identity.

Don’t stay there.

Accept that a mindset of fear will make the mind look for a constant enemy, not be empowering but strip away the life ahead. Accept that you don’t have to be angry but determined to help your child and yourself. Accept that the challenges are real but if our community pulls together to seek to help parents were better equipped to help their child with autism, it can change. Accept that adults on the spectrum can bring a lot of insight to parents who do not know what it is like for their child. For those who have been in denial to accept that there are adults on the spectrum, they have a voice and they can give hope to those who feel hopeless. There needs to be acceptance and awareness that parents have a voice too and need to be heard just as much as their children do. We all need to accept that we are not winning any battle by drawing lines in the sand and bashing each other. We need each other and those who are unwilling to accept that are just not ready for a paradigm shift. We need to acknowledge that, that is ok too. However, with more of us speaking out as parents for our children, giving our children a voice as well, and focusing on quality of life instead of what is seen as detriments of life, maybe that will change.

I hope there will be some minds bending to true awareness this month.

Here are some resources to help bring awareness.

What is Autism?

The History of Autism (Quicky)

Rethinking Autism

Some Videos

Loving Lamposts Trailer

Increasing Awareness of Women with Autism Spectrum Disorder

Girls and Asperger’s I have several more links on this page regarding girls.

Types of Asperger’s As a means to help identify in some way not to compartmentalize, there can be many variations and mixes. It usually depends on environment and stress levels.

Life with Asperger’s (8 different types of Asperger’s)

Communication Frustration   (Wretches and Jabberers)

Autism Symposium

Light it Up Blue (Reference to my post title.)

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10/18/11

County Fair

If you asked me even last year if we would go to a fair I would have laughed and said something like: “Yeah, right” Although I would have said the same thing about going to a Shrimp Fest, three stores in one day with the kids, a birthday party, or attempting Halloween. A lot has changed around here. One of the main reasons for us not doing those things was because we just couldn’t with Daniel. Either going would cause complete meltdowns and we would have to leave or the overstimulation afterwards would be too much for any of us. We still have the overstimulation issue, but knowing how to better help each one of us has made it worth the attempts to try new things.

Sometimes it is not fun, it can take several days for us to get back to our “normal”.

However, it is nothing like it used to be. We actually have fun going out. I am not a nervous wreck trying to stay on top of everything and everyone in an attempt to stop meltdowns, freak outs, or any possible thing that could happen. I have spent so many years on the defense that I caused a lot of stress in myself and others. I already soak in details, and have my own sensory issues, but when I try to stay on top of others sensory/social issues alongside that, it’s too much.  It is much better now because Daniel no longer runs away from us in a panic from a noise or what seems like a random thing that causes him fear. His communication and ability to articulate more clearly what is bothering him has made it so much better for him and me. I am no longer spending all of time trying to figure out what could scare him, what could make him run, what could make him panic, and then there is always the food thing.

He has stepped out a bit trying some new things.

We have been able to go to a restaurant a couple of times and we had fun, he had fun. A lot of questions, Daniel is always asking a ton of questions, but fun. In the past the only place that we went to that was pleasant was the museum. He loves the museum and would go every week if he could. I agree with him, I would like to go as well, but I need one that is a bit more exciting to go to. :-)   Given that it is pretty much the opposite of a fair, I was not too sure how it would go. My mom mentioned going to the fair and I said: “Let’s try it”.

Next time I will plan it a bit better though.

I knew it was going to be a bit rough because my mom had a church event where she had been face painting kids for two hours. She was overloaded and not “feeling” the fair. Daniel had been not feeling well all day, but he insisted that we go. By the time we went he was feeling better so that was good, but he was anxious since he had never gone before and the only reference he had was a Clifford game. He asked if Clifford would be at the fair. :-) My main concerns had been with him, I get frustrated with myself because when Daniel’s issues seem to be more prominent I forget about what Ariel and Joshua are going through.

We got there and it was going well, we had an adult per each child.

The first stop was the animals of course! It was already loud the second we got there though. The animals smelled so bad. We were able to see all of the animals and I talked to some cows, I got a picture of a beautiful cow who wanted me to set her free so she and I could walk around and talk some more. Then there was the pig who was SO over the event, the rooster who liked me telling him how pretty his feathers were and the chicken who was pretty upset about being in the cage next to that other chicken because she was rude. Ha ha ha Maybe I made all of that up, but I did talk to them and they seemed very happy about it. No one else talked to them. I did get some pictures, no flash!

Ariel started to get physically ill from the smell.

She started turning pale and was holding her nose. She had to go so we went off to check out the rides. All of them did very well, the wanderer ended up being Joshua, he could not hear a thing. Ariel and Joshua wanted to go on the carousel, as they stood in line Joshua started to lose color in his face and was holding his ears. Daniel did not want to go on the carousel. Joshua got worse and he could not go on the ride because the music was too loud. He had to sit out with Grammy and Daniel far away from the music. It was too loud for both Grammy and Daniel as well, but it wasn’t making them get sick like poor Joshua.

I took pictures of Ariel and David.

Ariel loved it. She wanted to do more rides. We found a dragon ride that she HAD to ride. Joshua decided to try it since it was quiet. I was concerned, but let him get on. I couldn’t recall why I was having an uneasy feeling until I looked at him sitting in the dragon with Ariel and I had a flash of what he has done on swings. He used to lose balance, have a petrified face, and would almost fall even when I was holding on to him. Panic hit me and I reminded David how Joshua can get off balance, he was on the outside of the ride. The opening was right there, what if he lost his balance and fell out? OH, GOD! Alright I stayed calm.

David told him to hold on for dear life and Joshua reassured him that he would be brave.

When it took off he had that moment of panic face, the second time around he was saying: “I am brave” over and over out loud, by the third time around he was hooting and hollering and having a blast. Daniel did not want to go on that ride either. He wanted to go on the Ferris wheel. I couldn’t let him, not this time it was too high and since we had never done anything like that he was too unpredictable. All of the rides were so fast or put the kids up in the air or were too loud. I couldn’t find one that would work. I finally found one that I thought may work. It was a boat that went back and forth and up and down. Plus I could ride with him so I offered that one.

Ariel wanted to ride as well.

Joshua was not about the boat at all and he didn’t care if it had pirates on it or not. We sat down and Daniel had his ears covered the whole time and asked me a ton of questions. The boy in front of us told us how cool the ride was. Then, it started. It was slow for like a second, but the jolts threw Ariel and Daniel off. The more it went the faster it got and I was covering both of them with my body telling them that it was ok. They both turned pale, Ariel’s eyes were bulging out of her head and Daniel was white as a ghost. I saw his little hands shaking and I yelled to the guy: “Stop the ride!” Both of them could barely walk, I had to carry Daniel and help Ariel along.

When we got down the questions started.

They both stared at the thing like it was some horrible beast that tried to destroy them. Ariel was teary-eyed and asked why she was so scared. Both of them wanted to know what happened and Daniel wanted to know why he was shaking. I explained that it threw their equilibrium off and it was just how their body was responding. I was feeling it too, but my Mommy instincts trumped my dizzy, nauseous feeling. We sat at the table for a while and Ariel bounced back quickly and wanted to go on the dragon ride because “It makes me feel like I am riding a real dragon”  Daniel did not recover so easily. He did not want to try any other rides. I explained to him that he didn’t need to be afraid that we could try again when he is older. At first he said no, but when I explained to him that not all rides are like that and maybe his body just wasn’t ready for it he was more receptive to trying again…sometime.

He has talked about it over and over again, but he is not afraid, which is a VERY good thing.

We were all overloaded. We were all over the noise, the smells, the people, the heat, and the bugs. We made it about three hours. YES! Three hours at a fair that is huge! Daniel had completely shutdown after the ride. He would not drink, his eyes were glazed over, he continued to ask questions, then got fixated on the fans in some of the buildings. He refused to leave one building that had a huge seven blade fan and vents in the ceiling that he could see. We were finally able to convince him to go and he came back to his goofy playful self after about 5 minutes in the car and two cups of water. Everyone had a lot of fun, I ate funnel cake again. Yes, I did!

Funnel Cake! (I didn’t eat the whole thing, I shared.)

Overall it was very enjoyable, it was a great adventure. It was a big accomplishment socially and sensory wise. I was so happy that the kids got to experience it. We will try again and I am sure it will be even better next year. Next year will most likely be at the fall festival in my hometown and that fair rocks! I am looking forward to having good food again, AND they have gluten-free food too! I wish someone would start making gluten-free funnel cakes at the fairs. I let the kids try some cotton candy. They were very excited about that. Ariel said that her favorite was the dragon ride and  so did Joshua, he said it was his favorite because “I felt like I was Anakin!” Daniel said that his favorite part was the animals because all the buildings had big fans.

I cannot believe we went to a county fair!  Awesome!

 


 

 

 

 

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09/1/11

A Lovely Day

Last Saturday, my mom offered to watch the kids and I took her up on the offer. I felt myself feeling emotionally exhausted and drained and I needed some time by myself. I did not hesitate or question or feel guilt about having her watch the kids. That was a big deal for me. I decided that I was going to go to the beach and read. I knew the waters would be rough and that there would be more creatures and shells on the sand from the hurricane. I like exploring when there are storms, I always see interesting things in the water or the sand.

For some reason I felt like I should stop at the Cat thrift store before the beach.

I hesitated about that for a moment, but then thought that I should listen to my gut and see what happens. There was nothing spectacular, but a few significant things to me. I walked in and went straight for one of the first bookshelves that normally has home school resources or workout DVD’s. I found nothing for school, but did find an unopened three in one Pilates DVD’s set that I have wanted since 2006. Score! I also found beginners step-by-step Tai Chi DVD and thought, “Why not?” That would be worth the $2.50 to try.

I wandered my way back to the toys.

They did not have much, but the kids have been begging for checkers and a chess set. I found a 7 in one game set for $3.50 and thought that was a good deal. I then ventured into the books and found a box set of Sherlock Holmes for $5.00. I decided to wait and see if I should get that one so I left it for the moment and said to myself ‘If I keep it under $20 then I can get it”. I found nothing else and went to the register still not sure why I was there. I felt a jolt to look at the movie DVD’s which I never really do because I always expect them to be bad movies.

I placed my items on the counter and said “Oh, wait”.

I bent down to look at the DVD’s and an unopened, perfectly new “The Big Kahuna” popped out at me. It was hidden in the midst of very lame movies and I laughed. I have wanted this movie for a long time, it has great significance to me. It is a treasure to me, but I have never purchased it. I snatched it up and smiled. Then, I thought there has to be at least one more movie I could find because it is either $3 for one or 2 for $5. I scanned the movies and “The Watchmen” jumped out at me. I have never seen this movie and I am not sure that I will, I haven’t felt right about it for some reason, but it is one of David’s favorite movies. So I grabbed that one too. The Big Kahuna is one of my favorites and he has never seen it.

The cashier rang up the items and I felt another jolt to go get the books.

I grabbed the Sherlock Holmes set and came back, my total was $19.80. She passed me two dimes on the glass counter with her two fingers and they glided toward me in a strange way. I felt as if something had just happened in that store, but I was not sure what exactly.  It all seemed like a movie. I left quite happy and be-bopped out to the car.

I went to the beach.

There were no clouds and it was very hot. I read for a while, but I started getting dizzy so I ventured to the water and the wet sand. I took pictures of the waves, they were much higher and rougher because of the hurricane. I got caught up in the crashing sounds and the foam that rushed to edge of my feet. I started digging up shells with my toes and I was so excited to find a shell perfectly intact. All the time that we have lived here I have never been able to find a shell with the spirals and complete. They are always broken or I can only find clam shells. I figured this was another broken one, but I wanted to take a picture of the spiral.

To my surprise I dug up a perfect treasure.

It was full of tiny other shells as well. There was an entire village of creatures living in this shell.  I kept it and continued to look for more. I saw some creatures that I have never seen before and I have no idea what they are. I did not bother them, I only took pictures. The last time I messed with creatures of the sea I found out that they were Conus sea snails and I was picking them up and examining them close to my face. At any moment I could have been harpooned with their tooth right in my face. I learned my lesson about how I should not touch sea creatures.

I continued to find shells of two.

Attached clam shells and rows of different types of shells. I took pictures and sat in silence. When I left it occurred to me that I had not once thought about being alone. I had not once felt anxious. I had not once felt awkward saying “hi” to people. I had not once thought about what they were thinking of me wallowing on the sand taking pictures on my elbows or digging with my toes. Or how I got face to the ground examining the contents inside some of the shells. It didn’t even occur to me to think that others were around. I danced in the water and played with the waves and I did not care. It seemed like it was right out of movie scene when the character discovers something. Possibly right after a climax or right before…before something bad happens. Oh, well no sharks and the kids were great that evening too. No worries about the next lead in to a climax, until another time.

It was a lovely day.

 


 

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08/28/11

Special Interest Quicky

Another one of my special interests which I have spoken about a bit are words. I do love words. Words are fun and fantastical. There are so many things that words do. They are playful, mean, accurate, distinctive, repulsive, magical, loving, caring, hurtful, wondrous. You can make words up. They can be gibberish. They can be truth. They are their own art form. I love them. Some of them are prickly, some of them are sharp, some of them are soft, some of them are squooshy and some of them burst in colors.

Yet I do not fully understand the way they are used.

I enjoy discovering new words and their meanings. I enjoy, the way words look to me. They can be quite playful or be triggers. Since I recently shared how one word was a trigger, the word “soon”, let me tell you what happens when they are no longer a trigger. They become a game, a pleasant joke to my memory. Now every time I see the word “soon”, I laugh. He smiles and waves and says “See you got me all wrong”. That is what words do with me. They are alive like numbers. They have colors and move and they wink and make me giggle.

I have many words that tickle my insides.

They can also hurt like daggers or fill me with unmeasurable joy. Mostly they make me happy. No words hurt for long once I figure out why they hurt, then they become my friend and useful for good. I like to write poems playing with words. Especially, when I am researching or learning something new. It helps me relate and fuse what I am learning to my mind, such as one of my recent poems titled “Stumbled”. I titled it purposefully wrong.

It is all about harmony and destiny so to speak.

As you read it, it is clear that it is all a mishap of what is seen as yin yang happening. Discovering your perfect zen by accident. I liked using the word karma because most people do not know the accurate meaning. Karma means “action” or “deed”, what I have read recently is that it is not about good or bad it is about choices. The choices we make now will affect us later in life and if you believe in rebirth, then it will affect that as well. That is a very simple way to explain it. To use it in a playful way as I did in my poem is exactly what I meant. To poke fun at how little and how much control we have over our lives. I am not sure how I feel about any of the words I used in the poem I was just playing with their definitions.

I do this often in my poems because words are playing with me.

I enjoy our playing and bantering together. I will most likely not reveal anymore of what is behind my poems or writings any longer because they no longer mean the same thing as they did last week or yesterday even. Some of them, however have been created into echoes that will live for eternity in the pleasantries of my mind. Others the hard ones will be reminders of how dark times turned to good and helped to create the lovely ones. I have found my peace with words and understanding how people use them differently than I do.

If I do not understand I will ask and that is the end of it.

You may see more of my playful word use. You have been warned. :-) I have some pictures of my books as a child, most of them are actually mine. We did find almost the complete set that I had of the Dandelion Library, I think I still had four or five of mine from when I was a kid. The others are from when I was a child, you can see I took pretty good care of them. They are set up exactly as I had them in my room as a child and growing up.

The Mathemagic and The Magic of Words were my constant companions.

 

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08/26/11

Pictures and Ramblings

There has been so many strange things that have been happening to me that I cannot let it go. I will not go into great details, but it seems things are just trying to tell me something. It’s possibly that my mind is more aware of certain things, who knows just go with it! After my moment of “breakthrough”, so to speak literally something unlocked in my brain. My recollection of memories and remembering parts of me has exploded. Other things that have happened have just made me stop and look around and wonder if I am in the Twilight Zone. If I start to feel a doubt about something or someone, the kids start singing a song out of the blue that I have a direct connection with the person or situation.

I asked them why they started singing it and they do not have a reason, they just felt like it.

It has happened for days not just once or twice and it will be a random child, interesting. I have had numbers pop out at me more, I had turned this part of me off as much as possible, but it seems that I cannot control it. I have math equations flooding my mind, many I do not know. I see them dancing in their full colors of glory for me to ponder.  I find this interesting because recently I wrote a poem about 11 and Lisa from Alienhippy suggested this movie for me to see An Invisible Sign. When I watched the trailer something broke open my memory and the part that I had shut down about numbers in my brain burst in my mind. I am waiting on the movie to be available at Netflix and decided to get the book first.

I started reading it today.

So far it is one of my favorites. Mona Gray is one of the most quirky, endearing and lovable characters. I relate to her quirkiness and numbers thing very much. As I began to read the words came alive in my head. There are only certain fiction writers that can do that for me, another writer that I happen to be reading right now is Nick Hornby. I am reading “Slam” which I like very much because it gives the feel of another character that I do love so, Houlden Caulfield. However, Sam Jones, the main character in Slam is much softer and gentle a character. It’s more like the feel of the books, I see parallels with Catcher in the Rye and Slam based on the feel of the characters personalities. I digress!

I was amazed at the parallels that I am seeing in my own life and the pages of this book “An Invisible Sign of My Own“.

Part of my process has been accepting myself and reviving those parts of me that I have hidden or stopped. This book seems to be confirming my new changes and is helping me to see myself through the commonalities that we share even though we are different. My mind has changed from comparing myself to others to accepting my own uniqueness as good. You know, at times I feel like such a child in a grown-up body. I feel silly with these fears and things that I share on here. I feel like this is a universal thing, though.

It seems like there are stories and tales of self discovery at all ages.

Sometimes it feels so hard to believe that others go through this too, I feel foolish. I really don’t care though, not anymore. If I am foolish so be it and I have to believe these things that I share are for a reason. I have been having a lot of connections through various means. I had slowly started on a journey opening myself up to things I stopped myself from like movies, certain music,  books, and really enjoying being outside like I used to, examining things in nature and animals. Something woke up in me. I am rambling again…

I am just going to share a ton of pictures and some wonderful quotes from the book.

Wait…let me just say the number 11 has been like a silly little friend lately and has made me giggle. I think it has been a way that my brain has been using to revive my love for numbers. I confessed that I see myself as a red 5 the other day. When I read in the book how she spent entire afternoons thinking about one number I thought it was marvelous since I have been stuck on 11. Then she said: “Take 5.” She goes on to say: ” Seems regular–five-dollar bill, five-minute break–but five is also the sum of two squares, and a prime, and pentagrams, and my sixth-grade teacher told me that the Pythagoreans thought 5 was about marriage because it was 3 (their first odd) joined with 2 (their first even).”  I love finding out history and meanings of numbers. When I hear or see something like that I go and research it.

Myths(ology) and science fascinate me and numbers are deeply in both.

Another thing I related to that I recently shared was about my “shutting down” or “stopping my feelings” the character on her tenth birthday began to quit. She just started quitting things that she enjoyed. She seemed to punish herself by withholding pleasures. Yes, I can relate very much. Part of my “quitting” things was to stop me from feeling. It would seem this character was doing something very similar.

I will leave abruptly and with a quote.

“Mix up some numbers and you get an equation for the way the wind shifts or an axiom for the movement of water, or the height of someone, or for how skin feels. You can account for softness. You can explain everything.” ~Mona Gray

I tried to make this short…I just have too many words flowing out of my hands.


 

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03/25/11

Aimee Mullins: The opportunity of adversity

I read this post today at Floortime Lite Mama and I was intrigued to watch the TED video from Aimee Mullins. I do not have time to share my thoughts today but I really wanted to share her talk because I felt it was really great.

Aimee Mullins: The opportunity of adversity


 

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03/25/11

On Games: They Are Helping Us

After watching Temple Grandin and reading this particular article and a few books, this past holiday we decided to work on turn taking and game skills. Temple shared how it helped her a lot learning turn taking and with David being SO into games, we felt that we should use the knowledge that David had gained about learning and games. He LOVES games, me not so much. It depends on the game. David is all about the strategy and I am all about reading the rules.

David likes to take hours playing games, doing role-playing games and those with deep story lines or other games like Risk.

Me, I like straight forward, tell me what to do, let’s play the game and then I feel satisfied that we finished it. I don’t care who wins. I have programmed myself not to, otherwise I get obsessive about winning. There is a whole history behind games and my dad’s side of the family that I will not go in to, but it caused me to not want to play games as an adult. Let’s just say the obsessive winning thing is genetic. Ariel is like that, if she doesn’t win, it is the end of the world. She is getting better. Joshua just loves playing, he doesn’t care if he wins or looses he just loves to play much like David.

Daniel, however, has not had a lot of interest.

He has played games off and on but it has been very hard to keep his attention most of the time. In the past few months we have seen a change in this. There were several games that we focused on to help with certain skills we felt we all needed to work on. David has done a ton of research on how games are great learning tools. He can go on for hours, days, years about board games, role-playing games, internet games, chess….whatever game, he can talk about it and share how it can be used as a learning tool. His mind automatically does this, when he sees a game, he will say that it can be used for math, reason, strategy, language, storytelling, and many other things.

I look at a game and I see rules that must be followed.

I do not share that special interest but I do learn a lot and have had my mind opened to interesting ways of teaching through David’s special interest. All of that to say he talked me into using games. He will send me game information and tell me how it may be good for school and I decide which ones I could use best for school and learning skills. It sounds like it may not be too fun but actually, I have observed the kids learning faster by adding games into our curriculum.

All of the games are learning tools without anyone feeling like it is.

I need particular games to play with the kids because I do not like role-playing games. David will play games with them like Heroscape and he modifies the game or they will make up game rules together.  I do not enjoy playing The Hobbit or Lord of the Rings, (he has all three) like they do. Daniel and I sit out and do our own thing, it seems he doesn’t much get into them either. However, sometimes he does join them. We finally chose several games that we have gotten over a course of time, while they have gone on sale over throughout the past year until now. There have been several different skills that we have been working on. They are as follows:

  • Turn Taking
  • Learning Make Believe/ Descriptive Story Telling
  • Learning Rules/Following Them
  • Winning/Losing
  • Having Fun
  • Communication Skills
  • Social Skills
  • Strategy
  • Motor Skills
  • Math/Reasoning
  • Reading
  • Completing Tasks

So far we are seeing some big improvements with all of the kids.

I am pleased with my ability to be able to do the list above as well. :-)   Playing games has improved Daniel’s communication with Ariel and Joshua. He is starting to tell them clearly what he is thinking or wants a lot of the time, instead of using me as a mediator. I have seen this improve much more rapidly since we started focusing on doing games together. There are several things I have seen a lot of improvement on. I really like to watch them enjoy themselves as they learn. We not only use board games but interactive internet games as well. We have a huge lot of software from graphic drawing to ancient history. The internet as well has many free resources for games.

We are a multi-sensory learning family, since that comes naturally to me and the kids just absorb, it works well.

Since we started to really focus on the story telling and trying to act out our stories, Daniel has recently asked for a doctor set. He has actually been connecting with David quite a bit. David has a tackle box with his “doctor” stuff in it and Daniel asked for his own so he could “be like Daddy”. Since this was the first time he has ever asked or connected like that we got him a set.

We also got Ariel her vet kit that she has been wanting since before Christmas.

Joshua wanted Lego’s, what else is there in the world? :-) It has proven to be a great buy, Ariel and Daniel have been playing off and on with their sets. They will lay out blankets on the floor and set up an animal hospital and people hospital. Joshua is their assistant, which means getting every stuffed animal and doll in the house, so they can be taken care of. I don’t know if this will help others but I thought I would share how games have helped us.

Here are some pictures and I will give links for people to check out if they feel like it.

Here are some reads about board game learning and a few about video game learning if you are interested.

Edutainment in School with Board Games

The Home Education

Currents in Electronic Literacy

TEEM: Computer Games in Education Summary Report

TEEM: Full Report

National Summit on Educational Games Fact Sheet

Summit on Educational Games site

And now for the game links I have pictured! I have other links of games we have that I do not have pictured as well. (I do not make any money off of these links, I just use them because they normally have good photos and descriptions.)

Star Wars Trouble

Minotarus Game

Lava Dragon

Rory’s Story Cubes

Jax Doodle Dice

Sleeping Queens This game has a very interesting story that can be read here: Sleeping Queens–Our Life in Cards

Coloretto

Think Fun Blocks All of the sets can be found on this link along with more similar games.

Pretend Play Doctor

Dalmation Vet Kit

Here are some games we have that I do not have pictured, they are either upstairs with David or in the other closet. :-)

SET

Quirkle Cubes

Uno

Upwords This game has helped Daniel and Ariel be able to create words from other words.

Jenga They use the Jenga blocks as regular blocks as well. They get pretty creative with them.

U-Build Sorry

We have a lot more, David and I actually played a lot of games before the kids were born. (I do pretty well with limited people playing, I felt comfortable with David and was able to have fun.) I have used them for a while with trying to do therapy but it didn’t actually resonate with me until I read the article that Temple wrote and connected what David had been telling me about his research. So there you have it, I guess I will say David was right maybe I should have listened to him in the first place. :- )


 






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