I have read several blogs from people who are on the spectrum and believe there should be neurodiversity. I am one of those people. I steer clear, most of the time from reading things about “recovery”. The reason is because I do not believe  that autism or the autism spectrum is a “condition or disorder” to be cured from. Although, there is no way I can possibly understand how other people feel. When people so desperately want a cure or want recovery,  I am rather confused because I don’t think there is anything wrong with me or Daniel. I feel we have challenges but learning how to deal with our challenges is what I consider progress. When I speak of Daniel’s progress I mean it differently than what other people may mean.

I do not think of it as “recovery”.

What would he be recovering from? What would that mean for me? Do I now need to recover myself? This gives me mixed emotions. On the one hand I can see how “recovery” would be a great thing for those who are completely unable to function. On the other hand I think possibly if parents or  organizations would stop spending so much time on “recovery” and “causes” and more time on learning how their child or children on the spectrum in general are communicating to better help them I think a lot more people would show progress.

What is my definition of progress?

Progress in this situation with Daniel is definitely steady improvement and developmental growth. Not because I want him to be “normal”. I want Daniel to progress so he can have a fully functional life by his terms. Daniel has progressed because I changed my attitude and gained knowledge. Before I understood Asperger’s or the autism spectrum I was ignorant and just wanted Daniel to be normal. However, I didn’t even know what normal was. In my struggles to live in this world, my prayer for my children was that they wouldn’t have to live like I did.

Once again my mindset changed.

My eyes were opened to the answer of that prayer. They are not going to live the way I did because they are accepted fully for who they are. When I accepted Daniel our whole life changed. When I stopped trying to make Daniel do what I thought he should be doing according to other people’s standards, Daniel just started doing it. When I let him teach me and I was able to understand his language my world made much more sense and his world became much happier.

Actually, all of us started having a much happier world.

Daniel’s progress is my progress, his progress is our families progress. We do not see this as a bad thing, we see this as a blessing. Even with all of the challenges that have come our way it is well worth it to have our children learn what unconditional love means, what acceptance means, and comprehending people’s unique way of thinking. Fear may play a huge factor in all of this for people. I am not sure but the response that our society has had about autism in general seems to be rooted in fear instead of trying to understand.

There are many roads that fear can lead you to.

Although I am a firm believer in acceptance I can see the other view of wanting recovery. Coming from a place of denial myself and at a time just wanting Daniel to be normal, if you do not have a mindset of acceptance you will not know truly if the person on the spectrum has changed. If one just wants the behaviour to stop one can make that happen. However, if one wants the person on the spectrum to be fully themselves and be accepted for their unique way of thinking, communicating, just being them it will take people really taking the time to understand people on the spectrum.

I do not believe in “recovery” I believe in acceptance that leads to progress.

Here is a great link to check out.

http://www.taaproject.com/

Edit: After I wrote this I found an excellent blog post that made a lot of sense. It says what I didn’t articulate completely.  Please read.

http://www.psychologytoday.com/blog/my-life-aspergers/200910/the-cure-autism-and-the-fight-over-it

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A year ago this week we had an amazing thing happen. Our church at the time was having a fall festival event and we decided that we would go. It was a back and forth struggle whether we should go or not because anytime we had tried something like that in the past it had been a nightmare. Either we would have to leave early because Daniel would loose it or when we got home it was hours of him flipping out. We decided we had to take a chance and let the other kids at least have a good time.

It was mass chaos.

There were people all around, loud noise, music, we were outside, people were coming up to us and just kids running everywhere. Exactly what you would expect going to a fall festival. Daniel saw the bouncy houses and he went straight for them. Daniel, Ariel and Joshua all jumped and jumped and had a great time. We stayed for over an hour. When it started getting a bit too crowded in the bouncy houses we decided to walk around to see the games and the other things going on.

Daniel did great, we told him the bouncy houses were night, night and he walked away with us.

That was a first, and as we walked around we stopped at the games and he actually tried them. He won some candy, we don’t usually let the kids have candy but we let them have one piece. We let him have a lollipop and he ate it! He actually licked it! That was a first, licking anything. He was doing so well when we left we decided to try to go to Target and see if there was any good Halloween clearance. We walked all around the chaos of Halloween items thrown all over the place. Scary items that he was not fond of, made him uncomfortable (still does) so I gave him a spinning toy that he could focus on.

We left the store and I was preparing myself for the meltdown when we got home, but hoped that it wouldn’t happen.

It didn’t happen. We had our first family outing that was pleasant, peaceful and fun. Our first one ever! Yesterday that actually hit me that it has been a year since that night and how much has changed since then. Not only Daniel but myself and everyone. We are much more happier than a year ago. There have been significant changes that have happened. We have eliminated unnecessary stress. We no longer allow outside sources that we have control over to bring us stress. We have really focused on Daniel being Daniel and not being “fixed”. We have gained knowledge that helps us as a family and we decide what is best for us.

After reflecting on all of this I decided to sit down and take a look at some of Daniel’s progress.

The list below is not exhaustive but it is a help to determine early signs of autism. A year ago Daniel was doing all of the items listed. In the past year, with the most rapid progress being in the last six months he has shown considerable improvement. There are many other things that he has progressed in as well but here is a short list. It is really amazing what progress has happened.

It is truly awesome what can happen in a year.

Social skills

Fails to respond to his or her name—–Now responds about 98%, when he does not respond it’s because he just doesn’t want to. Sometimes I will catch him laughing or smiling when I say “Daniel, are ignoring me?”

Has poor eye contact——Now has a steady state of eye contact, when asking for something, talking with family and others.

Appears not to hear you at times—–Now show signs of hearing and comprehending.

Resists cuddling and holding—-Now gives hugs and will give kisses and will  say “I love you”.

Appears unaware of others’ feelings—–Is starting to notice other peoples feelings, when siblings cry he no longer laughs but has genuine concern and tries to figure out why they are crying .

Seems to prefer playing alone — retreats into his or her “own world”—-Now plays with siblings about 80% of the day, is starting to try to interact with other children as well. It used to be around 15%.

Language

Starts talking later than other children—-Is starting to speak in complex sentences, is communicating what he wants, where he is hurt (just this week), why he is upset. This just happened in the last two weeks.

Loses previously acquired ability to say words or sentences—-Has not lost any words or sentences continues to progress.

Does not make eye contact when making requests—-Now makes eye contact every time he makes a request.

Speaks with an abnormal tone or rhythm — may use a singsong voice or robot-like speech—–This is still off and on but he thinks it is really funny when he uses different voices.

Can’t start a conversation or keep one going–-Is now just starting to start conversations, is unable to keep them going.

May repeat words or phrases verbatim, but doesn’t understand how to use them—–He is doing this but he keeps doing it until he understands it and then uses it when we least expect it.

Behavior

Performs repetitive movements, such as rocking, spinning or hand-flapping—-The only time he does this now is when he is too overloaded from sensory issues or doesn’t understand the social situation. It is not often, it used to be all day long.

Develops specific routines or rituals—He no longer sticks to strict routines, he will even initiate for us to leave to go somewhere at the spur of the moment and does not have a meltdown if we do go or if we say we can’t go.

Becomes disturbed at the slightest change in routines or rituals—-He has become very flexible with this and we are able to enjoy going out to place as a family now.

Moves constantly—This only happens now when the full moon is about to come or he is having sensory overload. It did used to be all day long.

May be fascinated by parts of an object, such as the spinning wheels of a toy car—Still loves anything that spins but we have made it a family thing and this has helped him be more interactive with us.

May be unusually sensitive to light, sound and touch and yet oblivious to pain—-This now only happens on occasion it is always due to sensory issues. However, with him starting to communicate more we have been able to help him with his sensory issues.

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Fitting In

Hand over mouth.
Eyes closed tight.
Deafening my ears.
Blinding my sight.

Cannot speak-Think me insane.
Cannot see-Too much pain.
Cannot hear-Least I fall.
Cannot stop-The masses call.

Aching stomach-Just fit in.
Head spinning-Withstand I sin.
Bitter taste-They spit me out.
Sickening smell-Their zig zag route.

Laughing hyenas closing in,
Open my eyes their games begin.
Ripping and shredding unto death,
I failed their wicked morbid tests.

“You were supposed to be like us!”
I feel their wretched blood lust,
head is about to bust.
“We accept you, but our way is the must!”

Fetal position-Surrounded with fear.
Head hidden-Anxiety here.
Clasping arms-Make it go away.
Rocking back and forth-No words to say.

Staring ahead-Just find my peace.
Emotionless face-Need this all to cease.
Mind racing-It won’t stop.
Eyes glaring-Back to the top.

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As I am sitting here, I am thinking about the weather cooling, the leaves changing, the darkness coming sooner and the soft light that is above our front door. The light is too bright to look at directly but the light beams bouncing off the walls to bring in just enough light, hovering over me as I sit in my shadowy hallway that has been converted into my office, brings me comfort and peace.

There is something about this time of year that just makes me smile.

I am not one for the cold, the smallest change in temperature can make me miserable. I am a very summer person. The cold makes the very core of my body hurt and when wind hits me it feels like sharp pieces of glass stabbing my flesh. But there are certain times when I am bundled up just enough to enjoy the cool air and the breeze hitting my face is nice.

I enjoy the fall season because it leads into so many great things.

October has always been a happy time for me but the strange thing is, it is a sad time also. I am not sure what it is, but my whole life I have gotten sad at the beginning of October through to December. I start to notice a change in January and then my sadness seems to lift. I have no reason that I am aware of to feel this way. Here is the strange thing, I feel completely at peace during that stretch also. My mood is usually a consistent calm. I am genuinely happy and at peace, but with a foreboding of sadness.

I don’t know what it is, it just happens.

During this time I see a lot of shadows. I like looking at the shadows. I enjoy the way the sky looks different. I feel a surreal calm when I look at the moon during this season. The sky at night has a different feel and everything seems to have colors day and night that are just full and rich. I feel like the earth is comforting me. I feel a closeness to God as I step outside as though I see Him looking deep into my eyes and saying “Hi there”.

I tend to look up in the sky a lot and say “Hi, thanks for this beauty”.

The shadows don’t scare me they make me feel comforted. I am at peace. My mind is calm. Looking forward to celebrating the twins birthday, having a day just full of family togetherness on Thanksgiving, reflecting on this past year being thankful, preparing for Christmas and just basking in the joy of the several months out of the year that I am not feeling constant chaos in my mind.

So as I look at the shadows that surround me,  I am also comforted in knowing I am no longer alone in the shadows.

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After I put my posts up regarding abuse, I decided to do some reading on other blogs I follow and it just so happens that a week ago one of the blogger’s did a post on abuse. I am going to put the link below along with another good read.

I have not talked about my childhood in detail.

There are some things to know, my mom has Aspie traits as well it is very obvious she is on the spectrum. She has accepted this and that is why there has been a lot of healing for her and myself. Her parents were not sympathetic to her issues. When my grand mother describes my mom as child she says that she was a loner, she played for hours by herself and felt more comfortable around adults. Her reasoning for this was she was an only child. Although she had a baby brother when she turned 5, and still would spend countless hours by herself, it was because she was the first born and alone for 5 years.

My mother refused to eat.

She was forced to sit at the kitchen table, in the dark, when she would not eat her food, even into the wee hours. She remembers being 4 yrs old and sitting in the dark while her parents were watching the news. She would have melt downs that mainly occurred when she was with baby sitters. She was sensitive to sound, light, food, and people. Her parents were not sensitive to her issues. She was screamed at, beaten, forced to stay in the living room when all she wanted was to be alone in her room. They said she was being stubborn and the only way to get her to stop was to beat it out of her. She couldn’t control herself.

My mom had me at 17 yrs old, she then parented me the way she had been parented.

All my mom knew was to yell, spank, and threaten. Just like her, it didn’t work. I still continued my behaviour, just like her I couldn’t control myself. I do not blame her and I must say my mom did not do near the damage to me that was done to her. She was sensitive to certain things because of what had happened to her. For instance, my sisters and I never were forced to eat anything. She had some pretty terrible things happen like her jaw being broken because she wouldn’t be quiet. That is abuse. (There is a lot more that is both painful and infuriating to hear.)  The other things that my mom did confused me but I learned how to not get her upset. I did my best and began making my routine her routine. Anything to keep mom from freaking out.

I just wanted peace, but I had a hard time controlling myself at home and at school.

I will not go into all of  what teachers did to me, but I will say I was ridiculed in class, told I was stupid, or told I was just trouble not worth anything. There is no point in talking about it, but now as a parent, I share this so others will be more aware of the care takers of their children. We cannot just sit back, we need to be involved in knowing who the people are that are caring for our children and what is their definition of correction. How are they going to handle your child if they have a melt down? What if your child is having major sensory sensitivity how are they going to handle it? What they may think is a good way to correct, could be considered abuse in the eyes of your child.

I am thankful that at school the only abuse I received was verbal.

But the abuse issue is real and needs to be dealt with. We will do whatever we can to protect all of our children from abuse. We feel strongly that we can educate Daniel, all of our children much better than our current school system. The reason-because we have invested hours upon on hours learning who our kids are.

We have taken the time and will continue throughout their learning progress to educate ourselves.

We do not trust others to put in the time, passion, or responsibility to helping our kids grow and develop in a way that is conducive to their learning style. Daniel has progressed tremendously in the this last year.  I have changed my way of thinking and  focused on helping him and trying to figure him out instead of just fixing behaviour. I cannot take a risk in another person who may damage him without my knowledge. He cannot tell me, not yet, and I am not about to even consider the possibility of him being abused.

We are not fearful, we are cautious.

The more he is able to communicate the more we will lighten up but for now we feel we are doing the absolute best for Daniel.  We are not counting on ourselves throughout their whole school career, right now they are still under the age of 5. As they grow older we will definitely need to look to other sources to help them in their studies. We will rely on other people better suited for teaching certain subjects, we are not against others teaching our children what we do not know. But at this point in their young lives we are their protectors,  we are to equip them, and we need to fill them with the confidence in themselves to know what is right for them and what is wrong for them. We may sound like it but we are not “helicopter parents”. (hover closely overhead, rarely out of reach) We do not want our children fearful we want them equipped.

Here are some links:

http://life-with-aspergers.blogspot.com/

http://www.aspieteacher.com/2009/10/the-things-i-saw-as-a-teacher-part-1/

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Now to relationships of my past, from my last post you heard of the incredible first boyfriend I had. During that relationship, I became extremely depressed, eating disorders were manifested even more, dis morphia, which I still struggle with, self hatred, self doubt, and I ended up in the emergency room from trying to commit suicide. I felt that was my only way out. Things had been escalating and the final straw was when he called me at 6am and told me he had just slept with my best friend. That was it for me. He did save my life by rushing over to my house and waking my mom – he also called 911. I was 16 years old when that happened.

From that I had to start going to a counselor, who just thought I was a teenager in a bad relationship.

I was in a bad relationship but the counselor didn’t go beyond that (do you see a pattern here?). No one asked the right questions. No one dug deeper to find out what was going on in my mind. No one noticed all of my cries for help. This incident did help me get the strength to get out of that relationship. I finally got to the point of saying to him, “Fine if you want to kill me do it! I am not going to let you control what I do!” And I didn’t let him, he tried to run me off the road, he followed me, sent his girlfriend (now wife) after me, but finally she got pregnant and that gave me freedom for a while.

I had started a new relationship.

The guy I started dating was one of my obsessions throughout high school. I had a massive crush on him and I thought he was the one. He would be the man who would love me and we would have a great life now that I escaped the grasp of psycho. Long story short , he was just as much of a jerk as my first. He didn’t physically abuse me but he did mess with me emotionally and mentally. He probably has no clue that he was like that because from what I can tell he is still the same way he was 18 years ago.

I would venture to say that he would say that it was my fault and that I was crazy.

Those were the common answers I got from him. He did things like push me out the front door naked and not let me back in, for our neighbors to see. He thought that was hilarious. He would pin me down and dig his elbow in my chest or back and do the all so lovely pass gas on me. He was a great one for my sensory issues. He would choose to have lunch with other girls at work and talk to many of the gals then say I was jealous. Well I was, I couldn’t understand why he would prefer to be with other people when he had me. I wasn’t possessive I was jealous in the sense of wanting him to choose me. Why not me?  He liked to have parties all the time. I would just get drunk – that was the only way I could cope with all the stuff going on. One of the devastating things he did to me was go behind my back and plan to move back to our home town. He told me on a 15 min. break at work. Later that evening I found out that practically everyone at our place of work knew except for me.

I was crushed and it took a long time to recover from that.

My first boyfriend and my second boyfriend had caused me a lot of pain and confusion. I had no idea how to read them. I looked like such a fool to other people. Everyone else knew all of these things going on and I had no idea. With my first boyfriend, I would befriend the girls he slept with. Why? I don’t know. In both of these relationships I felt I was the one not giving enough, not loving enough, the one who was causing them to behave the way they were. Somehow it had to be me because they understood the world and I didn’t. I tried so hard to do better to give everything I could in the last relationship and I wasn’t good enough.

continue on to part II…

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Those are the words that rang through my head.

“I must not be good enough, that is why they treat me this way.” After that ended, we kept in touch for the whole time I was in another state. Every time I came home to visit, I would see him. I thought there was still something there. Even when I had found another love, I continued to keep contact. I was so confused by all of that. Later after my third relationship ended (I will go into that in a moment) I thought possibly this was the time for us to get back together. He wasn’t dating anyone either. I went back to visit and I thought there was something there. I went back a few months later to to tell him I was thinking of moving back.

Another devastating blow.

We were supposed to go out with a group of friends and we did. BUT he had made a date that very day and was supposed to meet her at the bar we were at. I was hurt, furious, confused. Other people may have understood this but I didn’t. I thought he wanted to be with me. I was supposed to stay the night at his house, my things were there. Needless to say I was drunk, I lost it, I got crazy and don’t even remember the events of the evening other than he left to meet the girl. And his close friend got all chummy with me so we started a long distance relationship. I needed to sever ties with my ex and this was the only way I could bring myself closure.

Come to find out my ex didn’t care anyway and no harm was caused to him, only me and the friend.

I wasn’t very nice to the friend. Back to the third relationship, even though I was stuck in a cycle with that ex,  I thought my new boyfriend was the greatest thing that ever walked the face of the earth. Well he is pretty great now and he is the one who truly cared for me but didn’t know how. He is now married expecting a child and very happy. We are very happy for each other.  Although he was  not the greatest while we dated. He was a social butterfly. He was always out, always surrounded by the ladies, always thinking of traveling. He caused me to have trust issues too. He wouldn’t come home, when he did come home he would have phone numbers and sometimes makeup on his shirt. He made comments about things I needed to change to “better” myself. Actually all of them did, that did not help my self image. Never good enough. NEVER!

He did a similar thing as my second boyfriend.

One morning I answered the phone and there was a Swedish man on the other end asking for him. My heart sank I knew something was going on. So once again I found myself in a position of being in an apartment by myself  struggling to pay for it. He went behind my back and decided to go off to Sweden to work. I stayed with him while he was gone. Long distance relationship is very hard for someone with trust issues. I did get to go to Sweden but that ended up bad also. We came home together that was not supposed to happen. He had left me on my birthday in the apartment he was staying at and did something that caused him to have to leave. It was nothing major but enough to get sent home.

I found myself using my credit cards to get him home and off we flew back to the States.

It didn’t work well when we got back. We ended up breaking up. I had trust issues. Along with many others by this point. These three guys helped to make me even more confused and unable to understand relationships even more. There is so much to these stories it is very hard to limit them to a blog post but the point of sharing these things is to show that I was not stupid, I just didn’t realize that what they were doing was wrong. I thought I was wrong. I saw other people in relationships and they were not treated that way so the conclusion I came to was it had to be me.

The weird thing is after the relationships would end, people would then tell me all of this stuff that was going on.

What? I had no idea they were doing these things. When they would talk to me in a certain way, other people would think it was horrible and I was oblivious. They would make fun of me and belittle me but when we were alone they told me they loved me. I was confused. I didn’t understand. It was like the bullies who pretended to be my friend and then would hurt me. I thought it was me. I was the one who wasn’t normal, I was the one who didn’t understand how relationships worked, I had to rely on people like them to guide me.

Because of that I spent years in pain, confusion, constant self hatred and doubt.

Go check out part III for the rest of the story…

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I have to confess that I did have tantrums, freak outs, I would get violent and say some pretty nasty things. That was the only way I knew how to express what I was feeling. If I didn’t lash out I would begin to hold it in and harm myself. I did start cutting myself. I wrote some really dark stories and poems. I wanted to escape. I would spend time alone listening to music praying to die. I couldn’t understand why I couldn’t be loved. I didn’t even know what love was but I knew it was not what these guys had offered me. After I came to believe in Jesus, which I believe was led by God because no person got me to that point, I got to that point by reading the Bible from beginning to end and having Jesus revealed to me through that.

I believe I had an encounter that opened my eyes and began to show me that I had value.

By the time I met David, I had written off men and decided I would devote myself to Jesus. I devoted my life to doing what I felt Jesus wanted me to do, tell others how much He loves them. I still do that I believe God does love people and our mission on earth is to spread that love through letting others know they are valued. We all have gifts and talents that should be shared. We all need to know that we should be cared for, recognized, cherished for who were are. Not religion, not others interpretation of who God is and how you should live, just acceptance where you are for who you are and build into to you so that you can succeed in being the best unique you. Sorry, I didn’t mean to go off.

I met David which is a very long story that will have to wait.

He has been the best person to come into my life. I know God placed him in my life because he has loved me with no games. He has been everything that I have needed to overcome past pains. He has helped me to help myself. He has built into to me and encouraged me. He has brought me hope and not only told me that I am valued, he has valued me. We are open and honest with each other. We say what we mean and sometimes we hurt each other without meaning to but we discuss it. We talk. We share. We wrestle with the issues of our faith, the inconsistencies, the personal struggles, we work together to build into our children.

We also hardly leave our house, have limited friends, and keep a fortress of solitude.

We are two people with Aspie traits that just so happen to have enough of the same obsessions along with enough differences to challenge each other constantly. David works from home and I stay home with the kids. We like our life like this. We have to push ourselves to get out because otherwise we would never see anyone and be perfectly happy with that. Well we do like to  socialize but it takes so much out of us, we know that we have to for ourselves and especially our kids. We want to help them be able to be around people and have fun. Our kids have helped us to be more social. We all work together to help each other.

I say all of that to say it is not ok for people to be treated the way I was.

It is not ok for any person to go through a lot of what I went through but I do not know the major effects it can have on people who are on the autism spectrum. Abuse is not ok. People with autism and on the spectrum need people to be aware for them. We have got to watch out for abuse. I have been very protective of Daniel because he is still unable to tell me if someone has harmed him. He is just beginning to tell me when he has been hurt but still has a hard time telling me where and how. We have got to stay alert and on top of the way people treat those who are different, those who are unable to recognize abuse.

I would like to know how these kinds of situations effect other people on the spectrum.

I feel that several of things I have mentioned may seem quite silly, if I listed all of the things that were done to me I am positive people would think me crazy. However, for me these things were devastating. The situations caused me a lot of pain and suffering. I don’t think I am the only one and that is why I am writing this. I believe that it is both therapeutic for me and others to know that these things are not ok. No one should ever be treated this way and no one should feel like they deserve it. I am thankful to have David who helped me to understand that these things are wrong. If it wasn’t for him walking me through and building into me, I would still feel as though I deserved to be treated poorly by others. I have accepted this from people I dated, people I worked with, people I went to school with, people I went to church with over and over, I have accepted bullying and abuse as my fault. The majority of the time I didn’t even know it was abuse or bullying.

I know this is a long post and I hope you made it through without being terribly bored!

Here are some resources.

http://www.scn.org/autistics/abuse.html

http://kidshealth.org/teen/your_mind/relationships/abuse.html

http://www.mentalhelp.net/poc/center_index.php?id=2

http://www.recovery-man.com/abusive/abusive_signs.htm

http://www.keepkidshealthy.com/welcome/commonproblems/Child_Abuse.html

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I have been thinking of bullies because as Daniel gets older I have this thing inside me that is gearing up for the day that he tells me someone has said something or has done something to him. I am waiting for it with Ariel and Joshua as well. Kids can be brutal. Unfortunately for Daniel he may be least likely to comprehend what is happening to him. I was bullied a lot in school. There were a group of boys in my neighborhood growing up that were terrors. They did many mean things to me and I was always confused because they would pretend to be my friend and then do something like throw a rock at my head. I had a huge knot on my temple from that one.

Then there was the time they took my Pigs in Space lunch box and smashed it.

They pretended to be my friend that day as well. My mom got very angry with me and I got in a lot of trouble for letting them smash my lunch box. She didn’t understand what was going on. They made my life hell. They would act like they liked me to get me and then they would attack. Many a day I had to run home as fast as I could, my mom worked so I was alone, I had to get to my house before they could catch me and lock the door behind me. It seemed it wasn’t worth it to bother me if I was safe in my house. However, if they could get me outside horrible things would happen to me such as dog poop thrown in my hair, being held against my will and having my feet shot at with a bb gun, all sorts of bad things said to me and numerous times having something stolen from me.

It didn’t help that I had an odd name and a port wine birthmark on the side of my neck.

So that was elementary school for me. It was no wonder that I had temper tantrums and would hit other kids and have outbursts in class. I was sent outside in the hallway a lot. I got unsatisfactory conduct for talking and disturbing the class every year. I also had to sit on the bench at recess for refusing to do things in gym class, talking back and yelling at other students. No one cared to ask me why I was acting this way. Not one teacher asked me why I was yelling at the other students. Not one teacher asked me why I was refusing to do what they asked. Everyone just assumed I was a trouble maker. After all I came from a broken home and I lived in a lower income area. I didn’t show any potential right?

Not only was I suffering from social issues and sensory issues but I had to deal with being bullied as well.

That was just my neighborhood problems. At school I tried desperately to fit in. Finally in fourth grade I did gain friends. I believe now these four girls felt sorry for me. I was odd but I did love to dance. So we became a dance team and out on recess we spent our time making up dances and performing for the rest of the kids. I loved it, but something happened. I don’t recall what all the issues were but I told too many stories and that is what brought down my friendships. I just wanted to fit in. I tried to be like them. I wanted their lives. They had nice homes with a mom and a dad, and they seemed happy.

They got to have birthday parties with friends and they went places like the movies with each other.

I didn’t get to do that. I was embarrassed about my life and I just wanted to be normal and accepted. I mimicked them but that only lasts so long. By the next school year they would not talk to me and they had dismissed me as a freak. I have taken the blame for this stuff because I don’t remember what happened but I am sure now I wasn’t all to blame because that year when they had cut me off, during gym class one of the girls freaked out on me because I had shaved my legs. My mom said I could and there was nothing wrong with it – I was 11 yrs old. She yelled at me and said I was too young to shave my legs and couldn’t believe that I did and said what kind of mother do you have to let you shave your legs so young.

I think she might have had her own issues after thinking about it.

During middle school there were different kinds of bullies. Social bullies. Girl bullies and boy bullies. I got made fun of for my birthmark and my name. I would always make people laugh though. I didn’t mean too I was actually being serious but I would say the wrong things and people would think I was making a joke. That became my schtick. I still do this. I learned to just go with it when people laughed and then think about it later why they would think it was funny. So I learned what was inappropriate, to some extent. I was doing much better in middle school I made friends but by the next year they were no longer my friends.

I had made the dance team and was doing quite well.

The only problem with this is that I was obsessed with dance and my friends thought I became conceited. I wasn’t conceited, I was both amazed and estatic that I had made the team again the next year. They decided to teach me a lesson and started putting anonymous letters in my locker pretending it was from someone I really liked. It’s a good thing I didn’t talk to anyone and make a fool out of myself. They finally told me and I was crushed.  They decided not to be friends with me anymore. There is more to this story but it is very long and past history. I share it because it was devastating to me. Heart crushing and so confusing.

Another one from middle school: One of the most popular boys said to me during a game, “You’re not bad looking – if you didn’t have that birthmark, I would date you.”

High school was pretty similar to middle school except going in I had a boyfriend. A boyfriend who severely hurt me, confused me, devastated me, and put a knife in my self esteem for the next decade of my life. He was mentally, emotionally, and on occasion physically abusive. We dated for three years. He was a habitual cheater, liar, drug user, drinker, and high school drop out. He went to three different schools and finally quit. He threatened to kill me and kill anyone who attempted to date me. I believed him since he went after one guy and beat the crap out of him just for talking to me. He followed me and would show up at school, break into my locker and read my note books to see what I was doing.

I finally got away from him but I had to move out of state.

I did move back after seven years and this guy who was married with three children still knew the day that I moved back. He watched my apartment and showed up at my workplace one day. I told his wife and found out she was stalking me too. I ended up moving to another state again. Having this relationship really caused me a lot of damage. Being already confused and not understanding social cues, I was ruined for relationships to come.

I will write on that later.

Doing an overview of these events reminds me of how I need to equip my children to learn how to read social cues. I am still learning because the bullying did not stop and in the past two years I have been the victim of bullies again. The difference this time is that I had David to help me understand what was happening. After having the wrong behavior revealed to me, I was able to research and study for myself what it looks like. I now can look at my past and stop blaming myself. I thought I must have done something wrong for people to treat me the way they did. I thought it was me. I took all responsibility for their actions.

I never want my children to feel like they cannot share with us what is happening to them. I never want them to feel like it is their fault if someone is mistreating them. It is my responsibility to equip them and build into them so they will not allow anyone to treat them inappropriately. There are many resources now about the subject and many for Aspie’s so I am very hopeful for the future of our children. I am hopeful that there will be more awareness about Aspergers and the autism spectrum so we will be accepted and not bullied or made fun of. I pray the forced isolation will dissipate and understanding will flourish.

But if it doesn’t, at least I can teach my children how to live in a world that won’t accept them and be comfortable with that and with themselves.

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Some would consider this quite ridiculous, some would think me crazy, some would roll their eyes at me and some would completely understand what I am about to share. Right at this moment I am on the verge of tears. My insides are convulsing and the tears are beginning to come. I am taking deep breaths to calm myself as I am beginning to cry and am unable to control it. This is what happens to me when I have had too much social contact and unscripted events.

Today was Sunday and that means church.

Granted we go to church in a movie theater and it is a lot more comfortable for me than a regular church setting. None of the lights or sounds are on so it is quite peaceful before the actual movie theater opens. However, this morning Daniel would not get out of the shower, we began to run late. I have not been sleeping that well the last couple of days and that always feeds into my anxiety. David and I decided to stop at a coffee shop so I could get some tea and he a big latte. We were late and that makes me very anxious.

We got to church 15 min. late!

When we went to drop the kids off several of the little girls needed to go potty and there were only two teachers so I offered to stay until they came back. This made us walk into service very late and that makes me anxious. I feel awful walking in on the pastor while he is giving a message. I feel everyone looking at us and I have to keep my head down because it feels like their eyes are piercing into my skin. After service we get the kids and Daniel is wrestling me, I have to go to the restroom and send the kids out with David and Mom. Finally in the car I begin to calm down and relax.

David decides he wants a sub from a place I cannot eat from.

So I decide to go to another place and we stop to get a menu because I need to look it over to be able to choose what I want. We go to his sub place and get his food and drive over to the other place for me. I thought David would go in for me but he really didn’t want to and I got upset and said fine I will go in. Here it is the last bit to cause me to feel what I am feeling at this moment. I get out of the car, all I am doing is repeating my order in my head over and over again. I have never been in this place and I don’t know where to go. I don’t know how to order. I don’t know how the people are going to respond to me as I walk in the door.

This is one of my fears.

Ordering food. Yes, I am afraid to order food from anywhere. I cannot pick up a phone and order food without talking to myself the entire time. I have to have a piece of paper right in front of me with everything exact so I can order properly. If they ask me additional unexpected questions it throws me off. When I lived by myself I would rather starve than order food. I used to just not eat rather than go to the grocery store. Eventually I would go but I would have to talk to myself the whole time and tell me it was ok. I would only go to stores where I knew the layout.

I walked up to the register, looked at the guy and blurted out “I want a chicken parmesan sub to go.”

He looked at me and said “oh, you are making an order.” He was nice thank goodness. He took my order and then noticed my confusion and said I could sit at the bar and wait, it would be easier. So I did very thankful that he told me that because I was on my way outside because I was in a panic standing there. As I sat there I heard all of the sounds, an elderly lady spilled her drank all over the table, her friends, and on the floor. Ice went everywhere and I wanted to jump up and help clean it up but several of the employees came so I would have just been in the way. The sound hurt my ears. It was dark in there and the low hum sound of all the people talking was driving me crazy.

I tried to fix my mind on something so I read the closed caption on the TV.

It felt like the longest 10 min. of my life. The employees kept walking past me because I was right next to the kitchen. I felt the breeze of them every time. Then they would look at me every time they passed by and would smile and I just wanted them to stop looking. I smiled once, geez there is no need for anymore smiles. I finally turned myself completely to the TV so I wouldn’t have to do anymore smiles. My food finally came and the guy handed it to me TOO close, he could tell it made me uncomfortable and he apologized. Any normal person would not have a problem he wasn’t that close but for me it was.

Today’s events were actually the finale to the last three days.

Yesterday my mom and I went to a big garage sale that was inside a storage unit. We were in a confined area with a lot of people. Both of us were freaked out. We also went to a library book sale and I had gone on Friday as well. I had entirely too many social contacts the last three days. I had three days of being around people. Saying hello when I didn’t feel like, trying to come up with small talk and ending up just being awkward, my schedule for all three days completely off and now I am crying and do not know why.

Well I do know why but nothing triggered it my mind just finally said that is enough.

I have become so good at faking it that the only people who know I go through this is my mom and David. In the past I would just keep it to myself and have my meltdowns when no one was around. No one ever knew this about me. I used to drink a lot and that would help ease the pressure for social situations but I was not a good drunk. I would have flip outs over very unimportant things quite silly things actually but they were not silly to me at the time. I couldn’t control myself and my temper would get the best of me. I didn’t understand the social rules at clubs or bars and I didn’t understand my relationships. I was in a state of confusion, frustration, and anxiety all the time. And I couldn’t share it with anyone. I was desperate, lonely, and depressed.

I am very thankful now that I am able to understand when I am overloaded and that it is ok when I do not understand social situations.

I did not understand that before. I thought something was wrong with me because I wanted to stay home. I thought something was wrong with me because I would get freaked out meeting new people. I thought I just had to push myself to get over this but it only made it worse. Now I understand that these situations cause me much anxiety and are too much for me and it is ok if I cry for no reason other than I am overloaded.

I am so thankful that my kids are not going to feel the social pressures as I did.

If they do not want to go out they don’t have to. If they have a meltdown after we have been in a social setting it’s ok. I will just comfort them and let them know it’s ok. As they get older I will help them learn to find the thing that will help them through it. Mine is writing. I am already feeling better and I am not beating myself up for crying and feeling like that was stupid because I didn’t have a legitimate reason in my mind. I do not understand all of the things going on in my neurological make up but I do know my brain is different and reacts differently than others. To some going to a garage sale and ordering food is fun. It is a time to socialize, get out into society and have a good time. For me it takes all of my energy and taps into the fear of the unknown. That doesn’t mean I never go anywhere I do want to socialize and do things but I just have to prepare myself. I have to make sure I take quiet time afterwards also.

So I take a deep breath and get ready for the next adventure.

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