I am writing this because I am having serious conflicting feelings.

My topic today is autism once again. Though I have said before I see the arguments in autism similar in religion, science, philosophy, education, music, art on and on, the arguments are always valid and true to the party arguing their case. In many of the things I am referring to, it is quite impossible to get an absolute answer. It drives me crazy and sends my head reeling into an abyss of unanswerables. However, when it comes to autism, it gets pretty personal for me. I cannot understand the methods that are used to bring “awareness” to autism. We have conflicting parties and camps that are attacking each other, we have people all over the spectrum attacking each other, we have both people off and on the spectrum speaking for us and our children. Then we have those who are unable to speak, who are not given a chance to express themselves and who are suffering in silence crying out to be heard.

But they are never heard because no one will be quiet long enough to pay attention to how they are trying to communicate.

I am disturbed by the images of a puzzle piece – thinking of a person who is low functioning and unable to speak a language that all of us can understand, do they really want to be referred to as a puzzle missing a piece? Are they not a whole person just the way they are? Do they not have complete and whole value just like everyone? It makes me sick to my stomach to see the websites, YouTube videos, commercials, and all other media outlets that continue to say that this epidemic has kidnapped our kids, has stolen them from us, that they are not there and making statements while trying to get a message across they are inevitably claiming that their child or no other person has value unless they are playing baseball, going to the prom, or able to get married.

Now I am not attacking anyone. I am not trying to say that those things are bad to want for your child of course it is not a wrong thing to desire those but can people truly not find value in what their child has to offer the way they are?

I do understand their point of view…to a point.

I know  what it is like to have my child get extremely violent and out of control at what seems like a whim and having the frustration and pain of not knowing how to help them or what caused it. I know what it is like to have my child be nonverbal and have no idea what is going on with them. I know what it is like to watch him sit alone for hours spinning an object and feeling so desperate for answers. I know what it is like to feel helpless, alone, isolated, discouraged and just praising God to have him finally be able to feed himself at the age of three.  The list goes on and on but I choose to focus on how to help him not holding on to the can’ts. I am not saying that these people do not do that but in the midst of their words and actions like making claims that autism can be healed, there is recovery, we have to defeat autism, they are condemning and devaluing those of us who are on the autism spectrum, child and adult.

They are making statements that devalue their own child.

While making these commercials or doing these conferences with their child right next to them, are they not making the statement that they are less of a person because of their autism? A child with autism wants to please and have the acceptance of their parents and family like any other child, and how are they feeling about this? What do they think about their parents videotaping their tantrums or outbursts then showing them all around the world? I understand that people do not get it unless you show them but to have campaigns centered around all of the negatives…what kind of image are we setting in the minds of the world? What kind of message are we embedding in the many people on the spectrum never diagnosed? Alone, isolated, feeling that they are less of a person because they are unable to communicate their feelings or they express their feelings in ways that seem so foreign to everyone else?

Each campaign on either side imply that they have the absolute truth.

The mercury caused autism, the food caused it, the chemicals in the environment caused it, NO! It’s always been here, we have evolved into superior beings, look at all the famous people who could have been on the autism spectrum…..is this really bringing any answers? Is this really helping the countless adults on the spectrum who do not have insurance or programs to help them? Then we have the children, the focus of mainstream media, what about affordable programs for parents where the parents are totally involved? How about educating parents to know how to help their child, why their child does what they are doing, how to make the parent feel that they can help their child, learn their child’s way of communication? I say empower us parents instead making the parents feel helpless.  Let us spend the time and energy on building the parents up and changing the outlook a bit. How about inclusion groups for adults on the spectrum?

How about instead of saying there is no hope, those in the field loudly proclaim “your child has a unique perspective – let’s figure out how to understand it”?

Then equip parents and caregivers with the resources to do so. Give the children value and the parents value as well. As a parent I have been hit with bouts of failure, I somehow did something wrong to cause this. Well in a way that is true, my genes caused my son to have autism. So am I a failure? Am I a puzzle to be put together? Do I need fixing as well? Don’t we all? I do have compassion for the parents of children with low functioning autism (and I hate saying low and high functioning but I don’t have a better way to say it). There are so many other issues that they have to deal with as well, it is tiring, lonely, expensive, fearful and many other things. I totally understand wanting to find ways to heal your child, especially when they suffer from constant pain, seizures, epilepsy, are nonverbal, aggressive, and many other issues they can suffer from.

But this is my point.

Every person is different and every person is extreme in one way or the other. However, they still have value, they still need to have that energy wrapped around them that they are wanted. Though each parent feels that they are valuing their child, especially by trying to find the “cause’ of autism or finally “revealing” the truth behind vaccines, food, environment, my question is what are they truly fighting against or for? The image of autism has been very grim and because of that, those who are on the spectrum but are high functioning are left to be unaccepted. The “absolute truth” that autism needs to be defeated, leaves those of us who are already feeling defeated by society because our unusual ways of thinking,  as though we have no value either. Though there may be people on the spectrum who want a cure, here lies another question, a cure from what?

I will go around and around in my head over all of this because there is no definite answer.

What one person on the spectrum may want a cure from another may actually be able to use it as an amazing talent. One person may be in extreme pain from noise and want to have someone fix that for them because they hear things with such intensity that they cannot focus on anything else,  while another may thrive on loud noise and be able to hear things that others have never even noticed. Another person may be able to create awesome creations out of metal, while another person cannot even handle the gleam if it is struck by light or to touch it burns their skin. Yet, they are able to crochet or paint amazing pieces of art. Some may not be able to eat certain foods because of the textures but another can take the same food and make meals that would dazzle anyone’s taste buds. Then we have those who cannot step outside in the winter because the cold air feels like daggers in their flesh, while another doesn’t feel it at all and can lay in the soft pillowy snow as if in heaven.

There is no absolute truth to autism, its causes or its “fixes”.

Even if we do find answers to the questions it could be totally disproved in the next 10 years, more or less. I tear up when I see a video of a child on the spectrum who is in the middle of a tantrum or they are hurting themselves in some way, or they are staring at something intensely and the parent is in the background making comments. They are making negative comments, about how hard it is for them or how they wish they could have their child back. I am not dismissing the difficulty of their situation, but I feel for the child who is most likely capable of understanding what their parents are saying and doing by videotaping their “bad” behavior. I guess one of my points is that we cannot polarize one way or the other. We cannot take up the identity of something we are fighting for or against. Once we have taken that on as who we are completely, then we have lost our individuality and have adopted the fullness of whatever our cause is. When we take up the full identity and claim absolute truth, we are now operating in the mass and begin to have our eyes clouded to other people’s perspective.

I believe there are many reasons autism is at the forefront of our world today.

I believe that there can be valid points to each argument. I also believe that if we were able to come together in common ground, we would have some major breakthroughs on each side. It is very easy to begin to demonize people. I fall into this and have to continually keep a heart check. Although, when it is regarding my kids, I get overly aggressive in my thinking and that is when I have to start reading from different points of view, even when they make me sad or angry.

I really don’t know if any of this makes sense but I do feel much better that I got it out. I am still both hurt and offended by people demonizing autism or those with any disability. However, I do know that there is no talking to people when they are operating in a circular argument. People have to be ready to see things differently and the only way that will ever happen is to live life by accepting people the way they are, hope that they see it and respect us enough to do the same for us.  I am discovering that people will not understand me, my husband, or my children, and I cannot force them to.

We have to live our life and let the offenses go even though it is a very hard thing to do.

If you have made it through this whole post, hopefully you can take about 8 minutes and watch these clips I just found.

Autism Talk TV Ep. 8 – Stephen Shore

Autism Talk TV: Ep. 4: Peter Bell from Autism Speaks

Back to the book, Asperger’s and Girls.

It was recommended to me about a year ago and I was finally able to get it. I recommend it to any women on the spectrum. The more I find the more I am both comforted and sad at the same time. I am comforted because I am not the only one and sad because I wish I would have known this stuff a long time ago, it may have helped to prevent heart ache and confusion. As I am reading it though I see a lot of Ariel and how she is more like me than I thought. I am taking the information, I am learning it and filing it away for the years as she grows. I already notice how she will internalize things which I do too and that behavior caused me to be self-destructive and cause bodily harm to myself. I am hoping to give her a healthy self-image and the ability to think and stand up for herself. The goal is to let her know that she has a voice and it is important that she speaks it. I feel the same way for the boys but in this culture we live in, they claim that women have a voice but the dominating factor is the “Old White Christian Male” who will acknowledge a women for her beauty and claim that they are respecting her intelligence.

They let the little lady speak for a little bit but then laugh it off with a ‘isn’t that cute” feeling.

I could be wrong but I don’t think so America seems to still have the good ol ‘ boy mentality, at least where we are currently living. This really is just a rant, I will get back to my topic. First A Side Note: I just want to state here that I am not being overly sensitive to Ariel or Joshua, I am in observation mode. I have been observing Daniel for so long that I have not noticed a lot of things that they were doing. Now that I am understanding Daniel more I have been able to focus on some of their issues that I did not notice before. My goal with all of them is to help them be confident in who they are, understand themselves and grow into independent happy people. Ok, now back to the topic.

I have been reading several articles and watched this great clip with Dr. Tony Attwood.

\”Ask Dr. Tony\” on Girls with Aspergers – An Autism Hangout Feature Program

As I watched the video, again it was like watching someone describe my life. There are times when I do not know who I am at all because when I go out it is like my mind pulls up the script that I have learned and I automatically go into it. I find myself talking to someone and in my mind I am thinking “This isn’t me, why am I saying this?” Before I know it I am caught up saying things that I don’t agree with or I am confused by. I know that I have adopted scripts from people all along the way of my life and now the act has become so embedded that I don’t realize that I am doing it. I believe this is the majority of my social anxiety, I am unable to be myself because I don’t really know how to other than in my own home. However, this is not really talking about what I meant to talk about either and because I keep getting side tracked I will just leave with several sites and articles that I have found, that seem to have some good information on them.

More Than Just ‘Quirky’

Girls and Asperger’s Syndrome

About the Spectrum (This one has FAQ’s questions 12 & 13 are about females)

Girls with Asperger’s Syndrome

Girls & Women on the Autistic Spectrum

Asperger’s Syndrome in Women: A Different Set of Challenges?

1. It really started with the Fruit Loops incident but that was in April after that I was pushed over the edge and have not been able to recover. The surprise of the fruit loops in class.

2. The church changed their website and it really doesn’t flow I find it very hard to look at and the font is driving me crazy. I do not know why they changed it because it was very good before but I started to feel a sense of being duped.

3. They switched rooms one Sunday. This can be read about here Good Stuff.

4. We took a week off and they switched to an entirely different side of the building which can be read about here Sigh.

5. They changed the structure of the children’s ministry and now adding team leaders.

All of these changes have made me feel very uneasy. I do not know why they are making the changes, not that they are obligated to me and maybe it is all my fault because I was not there last week, regarding the switch to the other side of the building but it has just been a lot of change. They have been doing other things like starting up connect groups when there is only about two weeks notice of the new groups. I don’t know there is just a lot of change and surprises that were not there before and they have seemed to spring up in the last few weeks. The possible problem is that we are so disconnected that we have no clue to the goings on even when we are there but honestly it feels like they make changes on a whim and it gives me anxiety.

It seems to be going in a different direction entirely and I feel uncomfortable with it.

I cannot pin point what it is, it just doesn’t feel right. It is clearly not right for us. We need stability and I need to be stable if I am going to be any good to our children. We have to eliminate the cause of stress and anxiety otherwise I am not able to function. I somehow feel as if the image that they had created of themselves as a church was a mirage. They said they were one way but clearly they are not and now what they have been hiding all along is beginning to pop itself out and they will have many followers but not followers like us. They are all great people but we do not really feel a strong sense of them wanting us there. Hence my reason for feeling that our family is a burden and everyone would be happier if we were gone.

They have gone out of their way for us in many ways.

However, they must move on and do not have time or the ability to be concerned about whether any change they make is going to affect us as a family. They cannot spend time worrying about the craft and if they need to contact me ahead of time to ensure Daniel will be ok. They have too many other people now to deal with our children’s sensory issues or behaviors that may arise. They have outgrown us. I understand this and I not upset, I get it. Even though I fully understand, it does not take away the knot in my stomach or the tears that arise because once again when I felt that we could go to place that was good for us, I find that we indeed cannot. There seems to be that there will never be a place for our family to be accepted fully without being a tremendous burden.

This too gives me anxiety.

Why? Because it feels like rejection. I feel rejection for my kids, for David and for myself. This is not a pity party, I am not upset in a woo is me kind of way, I am feeling upset because we are not the only ones and we have yet to find our own kind anywhere. There has got to be a group of people who would accept us and feel comfortable around us, right? It upsets me that in the Christian world , a world that is supposed to be so accepting, that all I have received is complete rejection unless I play by their terms. That doesn’t make them bad people it makes them conformists and we are just unable to conform. We are also unwilling to let our kids conform.

There are just a whole mix of emotions that have flooded me because of these sudden changes, it is a big deal because it disrupts our family. There is a lot to all of this and I am not sure how to articulate it. I wish others would respond to this and share with me if they feel this or know what I am talking about.

Are you out there??

I know why this happened and thankfully I knew that I was just having a panic/anxiety attack.

I am still quite sensory sensitive, well lets say my usual sensory issues are heightened at this moment for some reason. Yesterday was hard for me and about noonish everyone was feeling it. The weather was kind of mixed cloudy/sunny may rain may not and that usually makes for entertaining days when that happens. My head was a cloud, I couldn’t think very well, I was irritable and very tired. Then just when I had resolved all of my issues from the Sunday at church thing and my Monday being a bit too much I received an email from the Children’s Leader/Pastor I am not sure what to call him.

They have made yet another change.

This change sent me into a whirlwind of complete confusion. My first response “We are done with this church”. They have made a change that to most is not a big deal but for us it adds another whole element of inconsistency and constant unknowing. They have issued team leaders, which is fine and dandy I have no problem with that but the one over Daniel/Ariel’s class is a person that we have not had much positive experience with. Somehow she is involved with autistic children in her occupation and she is set in her ways on how to “handle” an autistic child. We do things a lot differently and out of the many months that she has been in class with Daniel the bad experiences out weigh the good.

I have nothing against her, she just doesn’t know Daniel and she doesn’t care to know how we interact with him.

I know she doesn’t care or she thinks she knows better because she has not implemented any of the information I have asked her to in class when there is an issue. I sent a long email of why Daniel is doing certain things that he is doing, how to handle it and about Asperger’s to the Leader/Pastor and he sent out all that information to the teachers who are in Daniel’s class. She responded back to him talking about all of her experience and how she would be happy to help blah blah blah. I say blah blah blah because he forwarded me the email, I contacted her thanking her and asking her for any information to help Daniel.

She was nice enough and sent me to all of these places but it was very cold and our interactions were very evasive after the whole “helping” went down.

The problem we have is that we do not trust her. She doesn’t get us when there is a problem, she purposely left Daniel out of a craft because she didn’t want to deal with the situation. She ignored him as he was flopping on the floor and his pants were falling off and these kinds of things we find both humiliating to our child and unacceptable. So now that she is “in charge” what does that mean? What does it mean for Daniel? If teachers are having a problem understanding what is happening with Daniel, will she trump us the parents and do whatever she feels best? There are just so many questions.

Though I have all of these questions it is not main source of concern.

Daniel has been doing so well in class but I have sacrificed everyone in the family for the sake of Daniel getting to class on Sunday’s. I am not even sure if he likes it that much, I asked him but he doesn’t understand the question. Ariel could care less and Joshua said he would be sad but I am not sure why he doesn’t really play with any of the kids and that class is turning into a chaos fest. Joshua can’t even sit in on the music anymore because  it is too loud. So I have this added anxiety that our family is the “problem” family. Everyone would be happy and less stressed if we just left. I would leave in a heartbeat but I don’t know what else to do for the kids to socialize.

We live in a small town and the ideas, philosophies, beliefs are very limited and rigid. Ha ha ha A different rigid than myself.

Then I think about me and I wasn’t that socialized, most of my socialization came from adults and I liked it that way. I liked it when it was just me and my mom most of the time. Would our kids be satisfied with this? I am so confused and concerned that I may fail Daniel if we do not go but now the church is not safe. They keep changing things and I am starting to get real anxiety at the thought of going. I don’t want to talk to people or look at them. I can’t worship freely, I am constantly concerned with what is going on with kids. It was safe just the other day and now just like that everything is unpredictable, inconsistent, full of unknowns that are waking me up and causing me to have freak outs!

There is nothing against the church or the people they are all still very nice people.

We just don’t belong, the story of our life. Our children know more about the Bible and God than most people and they don’t really understand the point of the stories told to them in class because they don’t talk about it. At home we discuss why something happened or if the story seems very off and say wrong at times. We discuss the Old Testament and the cultures going on during those ancient times we discuss the teaching of Jesus and why it is so important to accept and love others no matter how different they are from us but we do not really learn that at church. We are uncomfortable an alienated. It is mostly our doing, it is our fault we are well aware. We cannot go to small groups and idly sit back and talk about things that seem to be profound. We ask hard questions and we cannot stop ourselves from doing it. We ask why do we believe in God? What is the differences between evolution and creationism? Do they even compare? Is the existence of God our own fabrication of some genetic make up that has been passed down in our DNA?

Why do we love God and would we still if there was no after life?

I got that question from another Aspie who does not believe in God “Would you believe in God if there were no after life, no reward, no anything after this, just this life?” She said that most religious people would answer “yes” without a thought so her challenge was to think about it before the question was answered, really think about it. So I did for over a week and I am still pondering with it. I came to terms several months ago with the whole no afterlife thing, it really doesn’t matter to me. If this is it I am perfectly satisfied and thankful for this whole life on earth, I do not love God for rewards or the promise of living for an eternity I love God because He saved me from a life that was destructive and brought me into this life with David and our children and revealed to me that I am not crazy after all of these years, I just think differently.

I love Him because I found out about Asperger’s and it has brought me a life of freedom NOW not later.

There are many other reasons but they have nothing to do with after life or rewards. But these are some good questions that we cannot ask in the spiritual place right now, I mean we cannot discuss it with others in this place. Do not question anything, God is everything, I am nothing blah blah blah. (I am using that a lot today.) I am writing all of this stuff because it is all of this stuff that is making me have anxiety. The bottom line I cannot be myself, David cannot be himself, our children cannot be themselves, completely and I just don’t think it is a good idea for everyone involved for us to be a part of it any longer.

That is how I am feeling right at this moment, which is always subject to change.

Although, I am pretty sure our time at this church is done because David hasn’t wanted go, on several Sunday’s the kids haven’t wanted to go and now my mom who has been an avid “you NEVER miss church” person, since she became a Believer, has been saying for several weeks now that she thinks she needs a break from church. None of us want to find another church, there is no point they are all the same only in a different package. We just don’t belong. I guess I really need to weigh the pros and cons. I do know that I have sacrificed myself for the sake of getting Daniel to class, this past Sunday was the first time that I was so bad that I couldn’t force myself to go in. Maybe that is a big sign right there that it isn’t the place for us right now.

I get conflicted though because I see Daniel doing well and think I HAVE to keep doing this, I just wish that we could find another outlet for socialization than I would have more peace about leaving.

I find it all sad really.

It is impossible to explain our life to others and have them relate to it unless they are willing to have an open mind. If you look at autism in all forms as a disease, a curse, some form of weakness than you will never really be able to appreciate the good things that come from having a mind wired so differently. I am not saying we are superior, I am saying we are different. The autistic mind has a different perspective that many can not accept.

I will admit I am kind of hurt and I am working through this.

Since no one has responded when we shared with the family about Asperger’s and even now over a year later, I do not know what they are thinking. Daniel is like something we sweep under the rug and dance around in conversations and if I even mention anything about me, well it is very clear no one buys it. I do wish for a moment they would take the time to look back at all of our interactions. All of the times they thought I was rude and I had no idea why they were upset. All of the times they said “you’re crazy”. The times I would say outlandish things, or started dancing for no reason, or shut down completely and isolated myself.  The way I am so animated or will not let up on a certain topic. All of which  I still do.

If they really took the time to think about it, I believe they would see.

However, I don’t think they can because it would destroy their whole beliefs about autism. Maybe it’s too much for them. They all have me labeled as the quirky, silly girl, who would say things to get in trouble, kick her aunt in the head because she changed the channel, have to get spanked because of her attitude, and be rude sometimes. I’m just weird and that label is just fine, but do not say that I am autistic in any way, because then the whole concept of the world we know will be swallowed up into a black hole, never to be recovered. If we acknowledge that Daniel and I or even David, Ariel and Joshua have autistic traits then we are flawed. So I accept defeat with honors and I say “hip hip hooray” while raising my white flag. I will do what they refuse to do, I will accept them fully with no expectations of them staying in my mold that I have created them in. Maybe one will surprise me, just maybe they will look up Asperger\’s and ask me questions, possibly look into the other things that effect us as well and read about the types of spectrums.

I guess I have not fully accepted defeat, if I still have the hope of them understanding and acknowledging  that we indeed are on the  autism spectrum. 

Or maybe that is just me.

The last sentence used to be the only thought that crossed my mind when I encountered the word fruit loops. Not anymore, now the word sends a panic to the depths of my mind, I can feel my neurons flooding to my brain and anxiety takes over, then I am no longer able to function properly. So when I saw the note on the table, next to the sign in sheet at church, blah, blah, blah “FRUIT LOOPS”, I almost started to hyperventilate. My brain immediately went to the last experience I had with these vile, wicked, evil loops. It involved Daniel and was so intense that it made this kind of impact on me.

It has been over a year, but the terror is still in me.

We were having a very good day, so good in fact that we all went grocery shopping. La la la things were going well and then while strolling happily down the cereal isle, out of the one million and one boxes that flood the cereal wall, Daniel spots the FRUIT LOOPS! He grabbed for them, said “uh, uh” while pointing and I calmly explained to him that he could not have them and why he could not have them.

That did not work.

You can only imagine how it went from there. Needless to say after a physical battle, I caved and gave him the fruit loops. Ok, fine it seems as though there was only a power struggle, the kid won, all is over, move on. I wish I could say that was the end. Let me fill you in on the rest of the story. Daniel ate one bowl of those fruit loops and for a week straight, screamed, rolled on the floor groaning and became completely obsessed with them despite all of the pain he was in. I threw them away and vowed NEVER to let him know of their existence again! So you can see my panic, right? I had a legitimate reason for being a complete spaz and for my brain to be flooded with all of the chemical reactions to cause me to go into fight or flight mode.

As I stood in the hallway, trying to figure out what to do, I had all of the images going through my head like a movie, playing over and over again.

The first thing I wanted to do was grab my kids and run straight for the doors. I know I sound insane but that is the impact of the situation. I had to weigh all of the situations that could possibly go down. If we leave, I mess up the script, Daniel freaks out, if I let him go to class, there may be a “fruit loop incident” which could consist of several different scenarios. I finally came to the conclusion that it was best for him to go to class. He was excited about church and he “had” to go. And this was after he had an aggressive morning, thanks to freaky weather and who do you think got the battleriffic rounds of the morning? That’s right, none other than the one who was ready to run for the hills!! It takes a lot out of me physically and mentally to come down from Daniel’s “rough” days.

Then to walk into something that is NOT the script, sends me into another world.

They normally do not have food, I do not usually need to be concerned with this, it has only been a couple of times BUT the last few weeks Daniel has been making incredible progress and with that comes very aggressive behavior and any kind of change is not good for any of us. So why today? WHY? I felt as if the universe was out to get me. I took a deep breath, trying to ignore the woman at the sign in sheet looking at me like I was insane, as I explained to Daniel that he absolutely could not eat the cereal they had in there. I went to his teachers and I explained to them that he could do the craft but he was not allowed to eat any of it. I was a spaz! I said Ariel couldn’t eat any either and then went to Joshua’s class and was a spaz in there. Thankfully the teachers are a bit understanding about Daniel’s diet restrictions and try to work with me.

I work hard to have my children be stable and healthy.

Though I sound quite unstable, my kids are quite fine. I try very hard not to let them have sugary snacks that are filled with chemicals, dyes and low quality ingredients. Why? Because I see the difference in my kids. They are not hyper, they are able to focus and retain well, they are very healthy, active and many other things that happen to children when they eat well and have a healthy balance. However, I do not deprive them from treats, they only get the healthier versions, the ones where you can pronounce every ingredient, know what it is without looking it up and there are not a billion of them. Simple, tasty snack treats, in moderation.

And this is what brings me to tears.

As I sat listening to the message about “The Good Samaritan”, I realized just how abnormal we are. How we do not fit in at church, with our other family members, and other social interactions. We do not fit in here. We are not seen. We have no voice in any community because no one understands! Well in a neurotypical community anyway. We are so different with our lifestyle and thinking that people do not relate to us a lot of the time. We have to limit our social connections, we can’t eat what they eat, we find it hard to find things to talk about, our progressive thinking, especially with our faith is not welcomed much in these parts. We cannot up and go hang out with people, we cannot just go and eat fruit loops! How ironic that the pastor was asking “What small difference can we make?”  Then he somehow tied it all in that we need to be less selfish among other things and look for people to help, to be there for, be “The Good Samaritan”.

Let’s see being considerate of those who are so completely different from you that they cannot just pick up a phone and talk.

Maybe realizing that some people have to plan 4 weeks in advance to prepare their family for change. How about understanding that some people just need for the world to see how difficult it is to live in YOUR world! Little things like springing an after church party is not good for someone with ASD. We can’t do it. I like being social but it needs to be on my terms and I need notice. My whole family does we are the freaks, I understand that but to just have someone get it once would be nice. There are many other things that could be considered just with in the congregation but I am not going into to that.

It would just be nice for once to have someone recognize that there are many things we have to consider to even be around people and they take all those things for granted.

Having that blown up in my face was just too much for me. We have never fit in and will never. Not that I want to but it’s the fact that if we don’t conform and by conforming cause complete chaos in our household, we are unable to have community. As I sat in church, once again my mind was playing the movie of my 12 year venture into the Christian church, like so many times during this walk, I asked myself again “Why do I even come?”. To top it off, the service was ending and I went out and saw David holding Daniel. What I had feared with the fruit loops came to pass, he had to leave class because he was throwing chairs. Then while in the lobby he started flopping and kicking all over the floor. He was not misbehaving he did not understand. But I will get to that in a moment.

I was almost in tears but held it together and got Ariel.

I apologized to the teachers but this was before I knew the whole story. I thought Daniel lost it because he couldn’t eat the fruit loops, I then found out that he was not allowed to make the craft. What? I had already given permission for him to make the craft, so my son was not allowed to do the craft, no wonder he flipped out. I explained to him that he couldn’t eat them and he most likely would have been fine if he would have been given the option to make it. AND they didn’t get us when he was upset. Teacher FAIL! I am upset, I know. I am working through it. I am not really angry at people, I am angry at the situation. Most of all I am angry at myself because I always forget how incredibly different we are and that not many people get it nor do they care to.

Freakin’ Fruit Loops! (not people, the fruit loops)

How do I know this?

Because I have crossed it on many occasions and so have my children and so has my husband. We are quite the quirky family and we live oddly to the rest of our limited world associations, now, because of the very fact that people find us so odd. Not really, we are just a bit strange about being around people.  I for one think that it is just fine for a child to ask whatever is on their mind, being that I do that most of the time and so does David, people do not seem to like this and I cannot remember that for some reason. David and I laugh a lot and my laugh is quite loud, I forget that too. The kids laugh pretty loud too, sometimes Daniel repeats other peoples words out in public with their voice and we all think that is quite humorous. Our boys have pretty wild hair, since they refuse to let me cut it.  We have had people not be quite pleasant to us for these things, just to name a few.

I have heard people claiming that it is good to be unique and different.

Some of them have been the first ones to point out any oddity. See what I am thinking is that as a society it is fine to not be normal as long as it looks like them. If they are obsessed with sports, then by all means any one like that is normal. If you have a fixation with being with friends and setting up many social events, then you are normal. If you watch an unmeasurable amount of TV, then you are normal. But if you like to spend time reading the back of a shampoo bottle, then you are not normal. If you enjoy staring at a spinning object while listening to music, for hours, then you are not normal. If you have an amazing amount of information packed into your brain about serial killers, then you are weird, I know that does sound strange but just go with me.

If you are consumed with watching a cat for hours, then you are quite strange.

Although, you may not be labeled autistic, people will say that you are weird. They will laugh it off and say “he/she is so quirky”. If you eat the same food everyday, at the same time, and if that gets moved back or forward at any point your entire day will not work out right or you spend the entire day trying to get it to work right, then you are not normal. If your clothes have to fit you a certain way and if they don’t you are willing to go through your entire closet to find an outfit that will fit comfortably and you are willing to not match, (and go out in public) then you are strange.

See there are some things that are not acceptable.

Even if you are the most loving, accepting person in the world there is something that you will consider not normal because you are comparing it to yourself, or the hidden law of normalcy, that no one quite has made clear but when you cross it then it is exposed. So somewhere at some time there will be a moment when we will all find some sort of behavior, an outfit, a phrase, something, not normal. How do we handle all of this? People respond in different ways and I have to say that there are some things that absolutely drive me crazy and I do not think that they are normal. And yet I ask to be accepted fully. Can we as humans let go of our own “norm” and accept the “norm” of others? I don’t know but I am willing to try.

Definition of Normal is below, I believe I fall under definition number 8.

1 : perpendicular; especially : perpendicular to a tangent at a point of tangency
2 a : according with, constituting, or not deviating from a norm, rule, or principle b : conforming to a type, standard, or regular pattern
3 : occurring naturally <normal immunity>
4 a : of, relating to, or characterized by average intelligence or development b : free from mental disorder : sane
5 a of a solution : having a concentration of one gram equivalent of solute per liter b : containing neither basic hydroxyl nor acid hydrogen <normal silver phosphate> c : not associated <normal molecules> d : having a straight-chain structure <normal butyl alcohol>
6 of a subgroup : having the property that every coset produced by operating on the left by a given element is equal to the coset produced by operating on the right by the same element
7 : relating to, involving, or being a normal curve or normal distribution <normal approximation to the binomial distribution>
8 of a matrix : having the property of commutativity under multiplication by the transpose of the matrix each of whose elements is a conjugate complex number with respect to the corresponding element of the given matrix

My silence kept me fearful.

I was not looking for information to help my son I was looking for information to heal my son. I was praying it away. I was begging God to help me and him. I did not want to be rejected any longer from a world that had rejected me so many times throughout my life. I was in denial because of my own hurts and insecurity.

I was being very selfish.

The community I was in didn’t talk about it, if I brought anything up I felt pressure to ensure them that he was healed. I wanted acceptance. I felt that my son was being rejected and I just couldn’t have him feel the same hurt and confusion I had felt. I followed the path of “believing” him healed and even convinced myself that it would all go away. At one point I loudly proclaimed to everyone that “he has been healed of autism!”

I was foolish, ignorant and very scared.

Knowledge is power. And after I had sent that email out about my son being healed something broke. I was a reflection of pride coming before the fall. Something inside realized that I was wrong. I was wrong in my thinking, I was wrong in my motives, I was wrong in my associations, I was in a place that would not bring about any kind of progress for my son. I had all emotions crash down on me and I finally faced what I was so desperately trying to run from.

I was the same as my son.

I opened my eyes and began to read books about autism. I began to engulf myself in the knowledge and ways to help him have a better quality of life. I no longer denied it, I embraced it and miraculously I saw results. I no longer tried to force him to be like other children I let him be himself. I saw in him the longing, the desire to just be understood. I finally saw my son through clear eyes that were accepting.

Autism is not a scary word, it is a misunderstood word.

The autistic spectrum is so vast that there is no way to make a clear-cut definition of what it is.  The symptoms and other issues can be identified but when it comes to the face of autism you cannot have just one. There are certain things that can be readily identified which can be read here. http://www.mayoclinic.com/health/autism/DS00348/DSECTION=symptoms

Though it is not exhaustive and there are so many factors that play into autism.

So many other issues that hinder the best quality of life such as having problems with sensory processing, knowing how to handle social situations, and even food intolerance’s can influence the life of a person with autism. It is not as simplistic as “this is autism” or having one person be the face of autism. We are all different, unique, we have different gifts, different ways of communicating, and we see the world in a different way. Our words mean something and we take them very seriously.

Every person is a unique individual and should be accepted.

I have taken on the cause of autism because it has brought a lot of restoration to me, it has not been a horrible label it has been something that has set me free and gave me the ability to understand myself, my son and this world a bit better. Though I do not really understand this world I can now operate in it without the tremendous amount of anxiety and fear I used to have, though I still have anxiety. I have another motive and that is I almost failed my son. Because of my lack of understanding, fear of rejection, inability to face something I didn’t understand, when I realized that, I could not live another day failing my son.

There are things that are not the most pleasant when it comes to behavior with a child with autism.

It is very challenging at times and we have to stay on strict schedules, diets and social limitations but that is the season we are in. Though some of these have gotten better, we understand our limits and as we all grow older we will learn more. Daniel has improved in his quality of life in many areas that would not be possible without the Occupational Therapists and Speech Therapists answering all of my questions and giving me the tools I needed to help him at home. It wouldn’t be possible if it wasn’t for the many books I read to help set up our home to be a constant place of learning for all of us.

Daniel may not be progressing had I not researched.

I decided to once again try changing his diet and seeing if it would possibly make a difference; it did for him and for myself. It has taken a lot of my time to research, read, ask questions, implement and get over my fear that I can’t do it. I can do it and so can any mother or father. Autism is not something to fear it is something to try to understand, find out who your child is and who you are. It is a word that has power and can bring a lot of clarity and bring new eyes to those who have become dull.

Not everyone feels the way I do and I understand that.

I cannot possibly understand their world and what they are experiencing but I do know once I stopped looking at autism as an enemy, my whole life changed for the better. I found out who I was, I learned how to broaden my view of love and acceptance and what they both really mean, I learned about all of the gifted people out there who have autism and how they use their gifts, I learned that I am simple-minded sometimes and really need to keep an open mind, and I learned that my gift of researching can actually help me instead of just being an obsession.

There are so many other things that just cannot be described or written.

I wrote this to help bring a little clarity about autism, it is not one-dimensional, and there are many things about it that no one understands and many things that we now understand. It’s not scary, it is misunderstood. As a mother with a child with autism and also being on the spectrum, please get educated, get awareness about the subject because though the world is saying it is an epidemic, it is actually just being recognized and having light shed on it, so don’t take the media image of autism as fact. There are going to be more children diagnosed and those who will never get a diagnosis because they are too “normal”, they will be a large part of your world.  As you see the movies and TV shows coming out don’t believe it is the only face of autism. Watch them with compassion for all of the people with autism and try to understand their world, try to be sympathetic to the parents who are doing what they feel is best for their child and have your eyes opened to a word that has more meaning than we can understand. Autism.

Some sites full of information about autism and autism acceptance.

http://www.autism-society.org/site/PageServer?pagename=about_home

http://en.wikipedia.org/wiki/Autism_spectrum

http://www.webmd.com/brain/autism/high-functioning-autism

http://www.youtube.com/watch?v=jmOSMc2Sepg

http://www.wired.com/medtech/health/magazine/16-03/ff_autism?currentPage=all

http://www.taaproject.com/

http://abcnews.go.com/Health/Autism/autism-signs-symptoms-missed-parents/story?id=10013129

So I have been reading, a lot of blogs that have popped up about the subject. To be honest I had no idea it was an issue. After reading several different views, I do see both sides. However, I finally got tired of sifting through the different reasons for both sides, but I did read several blog posts that I thought were very good that I am going to put on here.

It has never occurred to me that Asperger’s would be considered different from the word autism.

We are on the autism spectrum, that means we are all on the same page, right?. The difference is how we are functioning. Though we may think that we are functioning better than other autistic people, we may not be in certain areas. When I have written about low functioning autism, I didn’t think of it as my son is different, I am different, or that we are better than those who are lower functioning, those thoughts never occurred to me to think. When I think of low functioning or when I write about it, I am thinking about a particular situation that I have seen or read about, I do not know that situation, I do not understand what they are going through with certain things. I do in others. I mainly speak from a mothers point of view about my son, not knowing the situation for another parent, I don’t know how they feel all I know is how I feel. If I do not have the same experiences as those parents than there is no way for me to relate. If I think of autism as a good thing in many ways and they think of it as a bad thing, then I cannot relate.

Daniel has been considered low functioning and has progressed in many areas and all I know are those experiences and how I feel.

I am still kind of shocked about all of this, I never saw it coming. I wrote very briefly about the “autistic community” attacking one another, that includes everyone on the spectrum. That was mainly about those who go back and forth about who is autistic and who isn’t. When the blog posts about this situation started popping up I was surprised at the separation and the division. I don’t understand it. It is actually confusing for me.

I have many questions.

Every time I meet a person and they say something about Daniel, I explain to them that he is on the autism spectrum, it is a wide spectrum of differences. I use this to try to educate them about autism, it is not that simple to explain but I try to do my little part in letting them know that there are differences. Not because I want them to think Daniel or myself are better but because they have no clue about autism. They have what I had been given, what the media has shown them, that people with autism are unable to be a part of this world. That they have nothing to offer, they aren’t here, they do not understand or want anything to do with people. Which I feel is false for ALL people on the autism spectrum.

After discussing this with David, he brought up some points I had not considered.

He brought up issues like some of the Asperger’s community may be effected in their work place or getting jobs because of the autism label. Or having issues with health benefits. Not being socially accepted, because the media is now making it more acceptable to be an “Aspie”. All of these things I totally understand. But I feel there has not been enough focus on the various aspects of autism.

Wouldn’t it be more beneficial to look at autism as a whole and find the similarities that could be the way to find answers to help us communicate better in our own ways.

Maybe if more people on the spectrum were helping to develop early and late interventions we would have our eyes and the worlds eyes opened to all the different ways that we on the spectrum communicate, create, learn, see the world, and actually be able to contribute to this world instead of being labeled and outcast. Why in so many situations does it have to be “we versus them”? The argument will never be won between two autistic people. What is the point of it? Can there be a common ground? Isn’t the real point that the whole autistic community find their place in society? If we are attacking each other, how does that help the cause? We cannot make a difference if we are divided.

I always have a hopeful mind of bringing everyone together in peace.

When I read this first blog I have to say I did not know what they were talking about with the quotes that they had up. It hurt my feelings, and I am high functioning, but I remembered that feeling and it was the feeling of being bullied, made to feel less than another person. I did not like it and I cannot recall saying those things, at least if I said any it was not in this context. If I have said them and hurt anyone, I am truly sorry. I did not mean my words in a way to sound as if I was better or that being high functioning makes you more superior.

http://ow.ly/17nea

I thought these post was an interesting point of view.

http://theotherside.wordpress.com/2010/02/01/vanishing-diagnosis/

http://networkedblogs.com/gQGF

http://www.journeyswithautism.com/

http://aspergersquare8.blogspot.com/

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

When I was in school it was mandatory that we bring Valentine’s Day cards for everyone.

All through elementary school I had anxiety about this event. My mother didn’t get it and she would buy me the cheapest cards and not think of any of the consequences I would face with my peers. Later as I expressed my humiliation she let me choose my cards but she complained about having to pay for them the whole time which brought about a whole other anxiety issue. Every year I would sit on the floor pouring over the words that were on each card, with my list of names for each student. I would think of each individual and try to match the right wording to the feelings I felt for that person. My mother would get so aggravated with me, “just write their names and be done, its not that big of deal”. It was for me. Each person in my classes had treated me a certain way, they said things to me, they looked at me, they hurt me, they were nice to me, each one needed the correct card.

I thought everyone did this.

When I received my cards, I thought all of the other children did the same thing as I did. I thought they meant the words written on the cards. I was wrong and it brought about a lot of confusion for me and a lot of rude remarks from my peers. I still have a hard time comprehending this, when I found out that even some of the children’s mother’s were the ones who signed the names on the cards I couldn’t understand. How could she pick out the right card for each child, she didn’t even know any of us. I was thankful that in middle school and high school we didn’t have to do any of that but there was the whole buzz with the girls receiving items from admirers or their boyfriends.

I felt left out and longed to receive things like flowers so I wouldn’t feel like such an outcast.

Although when I had boyfriends and they gave me stuff like that, I was happy and angry at the same time. I was happy because they thought of me, so I thought, but that is another story, but angry because they got me crap! What was I going to do with flowers after they died? Why would I eat a box of chocolate when I don’t normally eat it? Why would I like cheap jewelry that was usually cheap gold and that looked green on my skin? And everyone who knows me knows that I only wear silver or platinum .Why would I want a big elephant stuffed animal when I never showed any interest in elephants? Why not get me some music, a book, take me to the library, watch one of my favorite movies, sit with me and watch an entire day of history channel or real life murder mystery stories? The problem was they were not into that and they didn’t really know me at all.

My ex-husband made me so incredibly angry with one of his Valentine’s Day gifts.

I will never forget it. I came home to my apartment and the hallway had rose peddles all over the floor leading to my door. I walked in and there were rose peddles leading from the door to the bedroom. I was freaking out because of the mess, the hallway had to be cleaned up. I didn’t want other people to slip and fall, it was a mess. So I came in saying that and he had to go clean it up before I could even go into the room. Finally, it was cleaned up in the hallway and I had cleaned up the floor in the apartment. I went into the bedroom and on the bed was  huge bouquet of roses, box wrapped in red, some sort of stuffed animal and a little box.  I didn’t like any of this it made me very uncomfortable.

One of the reasons was that I had already made it very clear that I am not that into Valentine’s Day.

I opened the box, my heart sank. Are you kidding me? I pulled out the most repulsive dress, a dress that I would never wear. It was red spandex, there were two single spaghetti strap, elastic things to hold this thing up. One over the neck the other across my back, the back was completely opened to the top of my butt, the trim at the bottom had red sequence beads. He wanted me to wear this out in public to a restaurant/dance place. There were so many things wrong with this but the one thing that continued to go through my mind, which I also kept saying out loud over and over, “it’s freezing outside why would you get this for me?” I could not wear that outside or in a restaurant. I am always cold and I would be even colder if I wore that, even if I wore a coat.

I asked him why did you get me this?

He tried to make it into a positive and get my mind off of the dress so he suggested I open the other small gift. I did, which proved to be even worse. He got me a gold necklace with a gold heart pendent! WTF? I looked at him in complete disbelief, “why would you get me gold and a heart?” “I don’t wear this, you know I don’t wear hearts or gold?” Why would he get me these things? I was so upset. He was pretty upset too, what an ungrateful mean person I was. Well I thought it was quite mean of him to waste money on such thoughtless gifts. I found out that he had taken his brothers girlfriend with him to go shopping to pick out things and she reassured him that any girl would love what she had picked out. Any girl but me! They were the complete opposite of me and the thing that made me so angry was that he was supposed to know this.

He was with me everyday, he saw what I liked and didn’t like, how could he be so insensitive.

Though if you ask him, I was insensitive and I am sure I did not say the correct words and they were most likely hurtful. I couldn’t even take the stuff back, he had purchased them in another city so I was stuck with these god awful gifts. I ended up giving them away to people I think could enjoy them. He knew I had an obsession with reading, there were so many books that I had on a list to get, why didn’t he get those? He told me that he didn’t think it was romantic and that I would get upset. I don’t think so, to be honest I think he wanted to dress me up like his little Barbie doll and parade me around town to make himself feel better, I could be wrong but from the way the marriage ended I am pretty sure I am correct.

I have never been one for flowers, candy, and jewelry unless they are very unique or I specifically request something.

I feel that the flowers, candy, jewelry, and even perfumes are quite useless and a waste of money on me. I understand other people like those things and I am fine with that, I actually enjoy getting them for others if I know that is what they like. I may not understand it but I enjoy them being happy about receiving such gifts. For me a token of love is taking out the trash, giving me books, finding a song that I have never heard before, changing a diaper, and letting me have uninterrupted internet time to gather all the information my little heart desires. Things like that are great gifts.

Jewelry bothers me, gold bothers me and I am not a fan of any kind of bling.

I do wear my wedding ring which is engraved in Hebrew that says “My Lover is Mine and I am His”. I stopped wearing earrings about 7 years ago, before that I had worn the same earrings for about 4-5 years straight. I wore a silver cross necklace for 9 years straight. I like it simple and easy to wear. Flowers will die and their smell really gets to me, along with perfumes and such it has to be just the right scent or else it can cause my head to go into a whirlwind and I get sick. I am very sensitive to smells. Candy of any sorts is not a good gift for me because I am very particular about the kinds I eat since chocolates have various textures and some of them are too gross for me. I could go on about this but I will stop myself. When it comes to cards I like giving cards but I really mean the words, so when I pick out a card I have read many and I chose the one that expresses my words the best. Since I am not very good at remembering to say things like how much I love a person or what they mean to mean I find cards to be good for me, however, some people don’t seem to think the same way about cards as I do.

I am grateful for having such an understanding  husband.

David gets it. He is right there with me. We don’t do any of those kinds of things for each other. We tell each other what we want and we don’t save it for a token social holiday. If we want to express our love for one another we just do it and it is in ways that other people would find quite boring or even odd. It works for us. That is all that matters expressing your love the way you feel comfortable. Is it a poem, a song, creating a painting, a quilt, making dolls, sharing your fan? However, you express love is great and should be encouraged. That was my biggest problem with my ex and other people in my life, he didn’t think about how he could express his love for me. He went to someone who didn’t know me at all. Many people do that, they see what is on tv or other media venues and believe that is the way they should express their love.

People have bought into it and reduced themselves down to these simple trinkets to make them feel loved.

You are loved when the people around you accept you just as you are and are willing to find the things that you enjoy to let you know that you are appreciated and deeply wanted. It may be flowers, jewelry or candy that makes you happy but isn’t there more? Isn’t their value in what you think or who you are more than these things and shouldn’t it be acknowledged a lot more than on a holiday that bears no real significance to your self-worth?

It’s not the gift, it’s the thought that goes into the gift. Happy Valentine’s Day.