Mind Retrofit

A spectrum of colors flowing around red, orange, yellow, green, blue, violet encircle you now.

They don’t stop there, there’s much more to see, red-violet, purple-gold, white-silver threading from me.

Entering in your imagination, your mind, opening up your thoughts, here there is no place, no time.

Circles and swirling, spheres all around in marvelous colors, you begin to escape the ground.

Lifting higher and higher, you soar, all around in my world of color and sound.

Smelling a sound, tasting a touch, hearing a color my world offers so much.

All of the numbers dance around, I see them alive and breathing, do you hear their sound?

Lights’ flashing, like glorious rain, music has now just entered your brain.

Feeling the rhythm, the chords, the beat, now filling your body the voice, oh so sweet.

Tracers are racing in a mystical sense, consuming your body take it all in.

This is what’s natural, this is what’s real, my world full of color, smell, sound, taste so intense.

Can you taste the red? It tastes like flutter.

Can you taste the blue? Sometimes I shudder.

Can you feel the light entering in? It brings peace and calm deep within.

Can you hear the black? The sound is a hush.

Can you feel the green? It’s an amazing rush.

Covering, a blanket that shadows you in, bringing you happiness, oh here comes the number 10!

Laughter fills your belly, a nice surprise the dancing numbers bring joy to your eyes.

Marching in rows count them 1, 2, 3, making this spectrum of chaos not be.

There is a reason, a perfect world full of numbers, color, and senses to explore.

Embrace my world, come with me, stay a while maybe you’ll see.

Your mind is filled with visions, pictures come alive, yellow is more vibrant and splashes you inside.

Speckles and drips of flinging colors spreading out from different places, people and things.

You don’t even notice now, it is all sane.

A world so fantastic, amazing and full, rich with intensity but warm and cool.

Shrouded in colors too deep to reveal, you finally understand some of what I feel.

This is from http://www.nakedpastor.com/. He has many interesting views and some may seem over the top, I believe that is the point. I find it all quite refreshing and challenging at times. I wanted to post this particular one because it hits very close to home. I really like his honesty and that he is a pastor who doesn’t hide but is exposing his fears, concerns and his journey, the markings of a true leader to me.

I went on a personal rant about the autism cure and I still do not know if I made any sense or if it was just a rant instead of expressing myself without being influenced by negative interactions. The problem is autism has so many things tagged to it, so many disorders and learning issues that goes a long with it that it is virtually impossible to label anything a clear-cut autism, besides the list of criteria. I find myself asking do we want to cure those or do we want to cure the way the autistic brain thinks. We have an autism spectrum that is different for every individual, though there may be similar issues that go along with it each person is completely different and each situation is completely different.

I know I have been on this topic a lot, I cannot seem to let it go yet.

Some of my expressions in previous posts about certain things may not have been explained properly. For instance diet, I believe that diet is very important. I do believe that a gluten-free diet is beneficial, however I have tried the casein free as well and that didn’t seem to make a difference. I do not drink milk it always makes me sick, Daniel drinks only soy milk, there seems to be certain yogurt that upset my stomach, Daniel will only eat all natural or organic vanilla, I am fine with cheese, (real cheese) Daniel doesn’t really eat any cheese. I go with what he wants and then I tweak it.

I believe it is good to add certain supplements like Omega 3’s.

We are very particular about the flax seed oil we use and the fish oils we use. We use only organic, Kosher, Mercury free (as much as they can get it free), and we purchase them from places that we feel are trustworthy. We do the same for all of our vitamins. Since I started the diet and Omega’s Daniel has shown quite a bit of improvement. So when it comes to these things I am in agreement with quite a few of the people and organizations that I may feel strongly against in other areas.

While I was pregnant with the twins we totally changed our lifestyle.

The first several months were bad for me and I could hardly eat anything,  the interesting thing was that my body started craving healthy foods. David was writing a science text-book and teaching at a local college at the time in anatomy and physiology which is not his field but it was work, through that he took notice of the effects of food on the body and mind. We changed everything and I made sure to eat well during my pregnancies. It made me feel better. We decided that I would make all of the children’s food as soon as they were ready to eat. I steamed organic veggies and fruits and puree them their whole young life. We had whole grains and no refined sugar or chocolate until they were three. I didn’t deprive them I just gave them healthier versions, I still do but we get real treats too. Daniel had to have all of his food pureed until he was three yrs old and still now some foods. I didn’t realize until after learning about gluten, that because of what I was feeding him, he was upset all the time. Now he does not have nearly the issues that he had before and I believe that is because of his diet change.

So when it comes to diet and certain supplements I am in full agreement with the autism cure people.

However, I am not sure about the vaccine issue. I noticed Daniel’s issues from the time he was born, maybe it was because he had a twin and she was  not effected in the same way or maybe because some of his issues seemed very familiar to me or maybe both. He didn’t show any significant change after being vaccinated, of course they could argue that but I am not going into that argument. The fact of the matter is that my mother is an adult with autism, I noticed a lot of the things with Daniel as he got older because he was doing what my mother had always done. All the stories from her childhood involved her playing by herself, not talking to people, not eating, having meltdowns, taking things literally, among a few of the characteristics. My grandparents just thought she was a stubborn and shy child, she would grow out of it.

My mother has not grown out of it.

My grandmother shows many traits as well but in different ways. Now looking back, my mother can pinpoint all of the characteristics that I had and now we understand why we think and do the things we do. For us it is very obvious in our family that it is genetic. I have a hard time believing that it is not in other families and that it just magically appeared. Can those with the genetic code be prone to regress after vaccines? Possibly. Can the environment play a key role in all of this? Possibly. But I cannot see them being the full-blown reason for autism.  The mind is so complex and the genetic make up has so many variations that can create a human being that I ask, how can you rule out genetics?

What happens when more and more people out of fear stop getting vaccines for their children?

Are we not concerned with possibly having Polio, Small Pox, and Malaria coming back into our society once again? What do we do when we have an out break? I am just wondering, I have questions about convincing people that the main cause of autism is from vaccines when we have no hard evidence and in the mean time other diseases could be a potential threat. Then again I am coming from the scientific mindset, which we know that these groups are against mainstream scientific thinking. I am not saying that as a dig, from what I gather they are not buying the medical communities answers and are claiming that they are lying to make more money. The pharmaceutical companies and doctors are in cahoots so they can be rich. Although, I see a lot of the groups who claim this making a lot of money themselves.

Autism is a big business on either side.

I see similar parallels with religion, politics, media, and other sicknesses. They use scare tactics to get money and then where does the money go? Some have legitimate case studies, there are doctors out there doing some really great things but the loudest voice is the mass. The epidemic must be stopped, but doesn’t every generation have its own epidemic that must be smite out to save the next generation? Some of those have been good things to stop like Measles and Polio. It was good to create a vaccine for them. I am not all pro vaccines, I am very leery of the flu shot, I still have never gotten one. Our children had it once but not since then. But our children are very healthy. Each of them in their short lives have only been on antibiotics once. I am a bit of freak when it comes to germs, well not too bad but I take precautions. They still get sickly but it doesn’t seem to last that long and they hardly ever have fevers.

We change our clothes the second we get home from any social gathering.

We wash our hands, we use hand sanitizer whenever we are out and about, we try to eat as healthy as possible, we exercise, we try to get good sleep. (the sleep thing is a toughy, Daniel and I both have sleep issues) I have tissue with me to wipe other children’s noses if they need it, to protect my kids. I know that is a little too much but the moms are usually thankful that I have them. I don’t think I have offended anyone. I am not against medications when they are needed. I have been on Zoloft and have needed antibiotics so I am not all freaky about it.

I still don’t know if I have expressed myself properly in this post.

I am trying to help myself by writing this so I can let it go. My brain keeps going in a loop about this subject. When I write something then I realize that what I have written could be interpreted wrong, I don’t want to be offensive but I am sure I am and I would  not really know which part was offensive until someone revealed it me and explained why. I drive myself crazy trying to get just the right words and they are not coming. I have to let this go and I hope it all makes sense. When the kids are older I want them to know why we feel the way we do about this stuff. I want to be able to remind myself so I do not have to go in a loop of watching, reading, dissecting everything I find to make sure I have all the information when there is no way I can.

Hopefully people will understand what I am saying and hopefully I will feel satisfied with writing this.

I think I said this before but here I go, I see the good and the bad on both sides. I wish we could find both sides working together, I know there are several groups out there doing that but it needs to be more. We need to find the balance so we can coexist without hostility and find acceptance for each other. Adults with autism could be very beneficial to parents who do not understand their autistic child and those who are not on the spectrum can be very beneficial to us.   When will we all find our peace and acceptance and embrace our differences to learn how to enhance one another and make this a great world to live?

I can dream.

I am going to write this post solely on my own perspective. I am clarifying right now that I know nothing except my own experiences and how I perceive things. I am not writing to judge others or make anyone feel as if they are not doing what is best for them. I do want to write this though because it may give someone a different view, a new way to look at things, maybe open their eyes to try to see from a point of view that is different from their own.

That is what I do, I want to be challenged in my thinking.

I hope to have my eyes opened at all times to different ways to use my strengths for my advantage and to not dwell on what others perceive as my weaknesses, but look for ways to turn my weakness into a non-issue or find resources to help me with them. They do not hold me back, they just are what they are and I could dwell on them, try to force myself to change them so I am like everyone else or just handle them the best way I can when they seem to hinder me, or they annoy me at certain points in my life. Like having a meltdown because of social or sensory or both overload.

I am sharing some of my views on autism.

I can be wrong but in my world I am not, though I am open to being proven wrong. This is a learned behavior I have not always been so opened minded, when it comes to certain things I cannot think differently, I have tried and some things I find absolutely right and absolutely wrong, others things not so much. When it comes to autism I was absolutely in the mind-set of it was wrong, it was an evil that was stealing my child, it had to be cured, I had to pray it away. I was ignorant, uneducated on the subject, and was only going by the media point of view about autism, since I had no reason to question it before that was the view I took.

When Daniel came along, I knew something was different but I was not quite sure what it was.

Although, I was saying he was different because I was comparing him to what others said or how other children were. Many things about Daniel were not different to me, but I knew they were unacceptable in this world because when I was young those words were spoken to me. “You cannot do that, that is not what people do or say.”After discovering that Daniel was on the autistic spectrum,  I consumed as much information on the subject as possible. (I still do.)  Despite all of the clear signs, I did not really think he was autistic. I mean how could he be, surely he would just stop one day, right?

That is what I prayed for, that is what others implied I needed to pray for, that was what they were praying for.

There was also the hint of  “what have you done wrong to your child?”  Or “what sin in your life caused your child to suffer so?” There was also those who were completely oblivious. (There are still these people) They saw nothing wrong with him, he is just being a boy or a picky eater. Um…No! He wasn’t talking, he didn’t feed himself, he didn’t stay in a room with us, he didn’t acknowledge his siblings, he would scream all day long, he was unresponsive to me or anyone else, and would spin things for hours and I am talking hours. I am just naming a few and they are some of the most common issues found with autism. Though I am one who believes we should accept the autistic mind, I still feel that we need to find a way to communicate, our way to communicate.

I heard myself at times saying “he is in there, I know it. I have seen glimpses of him”.

I was repeating the script in my head of all the doom and gloom stories I had read, people in my life who also had children on the spectrum but would never say it because “they are healed, in Jesus name”, and I had been hit with Jenny McCarthy and her clan as well all over the media. Everywhere. I tell you what though, seeing Jenny McCarthy was actually my wake up call. Nothing against the woman, but I have never had much respect for her and it is very hard for my opinion to change now. I know she is doing what she feels is best, though there may be success stories there are still those that are unsuccessful and that leaves parents asking the questions like, “why didn’t it work for my child?” or “what did I do wrong for this not to work?” I read all of the websites, researched as much as possible what they were doing because they do not share a lot, it is all “inside” information. You have to purchase more or get involved with a specific person to get the help and that too costs money.

The really funny thing is that it is the same tactics that “prophets” in certain Christian circles use.

There is this whole mystery and intrigue and in order for you to gain the full understanding to “help” your child or say “hear from God” you need to buy this, buy that, be sure to give to him/her and because of your obedience to “God” you will receive your answer, healing, prosperity, your whatever your little heart desires. There are a lot of things like that, I find it no different from the medicine men that came around with their tonics, snake oils and promised people that they would be healed or make them a success. Once again just my opinion, not that it is worth much. I will say this has been my experience so that is why I hold this opinion. Bottom line I wanted(want) to do whatever to help my son. As I began really reading from different sides from the medical people, to the holistic, to the parents who are suffering so, to the Autism Speaks people, I found no one knows. WHAT? That is correct no one has definitive answers, no one knows what the heck they are doing! Everyone is using these children as guinea pigs for their own purposes, even if they mean well and feel that they are doing their best, that is the truth of the matter.

It wasn’t until I hit my wall with Daniel, we were getting evaluations and they were wanting to schedule genetic testing, and millions of other tests on him that I reached out to a mother who was talking about her son with AS, being fully who he is supposed to be.

I had started reading Tony Attwood’s book “The Complete Guide to Asperger’s Syndrome”, my eyes were starting to open. The woman had responded to my comment about me wanting Daniel to be fully who God intended him to be, she said “Daniel is who God intended him to be”. I knew this, I felt this but everyone else was telling me that was not true. People didn’t say it with words all the time, they did it in action, half the time I didn’t understand why people said the things they did about Daniel. There were a couple of “seasoned” autistic moms that would say things like “we didn’t let our son hand flip, we just didn’t allow it” or “you know you should come over and see my therapy items and I can show you how to use them properly to help him with not being calm”. He was in therapy with professionals, did she honestly think she could teach me better than a trained occupational therapist who was spending hours with my child and knew him far better than her? I never responded and I got as much as I possibly could out of the therapist so I could do everything available to me at home.

And back to “seasoned” autistic mom, what is so wrong with hand flapping anyway? Who is it bothering?

She never took notice of my strange quirks like holding my hands oddly or touching every pew as I came into the church. What about my constant gum chewing or how when I talk I am moving all around and not looking at her? Maybe she just thought I was possessed. Just kidding! The thing is I knew why Daniel was hand flapping, he was surrounded by 40 some odd kids who were all different ages, dancing and singing, they had the lights dim and had smoke makers and spinning lights, he was overstimulated and trying to get peace in the midst of chaos.  (And I did it, trying to help him socialize! Me-clueless) I would think someone with a 16 yr old autistic child would know this, wouldn’t she know that my child was trying to bring peace to his world that had become incredibly chaotic? I guess not and that is what is bringing me to my point. (FYI, Daniel rarely flaps his hands now as a matter of fact I cannot think of the last time he did, he has found other ways to sooth himself like keeping a spinning toy with him. I never told him to stop.)

We have different perspectives.

It took me a while to get to this place but I felt it, even though other people were making me feel as if I should not accept Daniel the way he was, (is)  I still did. I connected with my son, I recognized behavior in him that was just like my mother, myself and at times David. I looked up as many different therapies as possible, David being a chemist was very apprehensive to go into the herbs and supplements and he has proven to be correct. The studies are not conclusive, there is a lot of quackery out there, no one is regulating the ingredients, and no one knows what it does to a developing brain and body. If you are an adult fine but as a child there is really no way of knowing the effects of pumping them up with different types of prescription drugs,supplements, vitamins, enzymes etc… (Not that I am totally against all of those things.)

I have an issue with those who claim that detoxifying their child has worked!

Really, ok that is fine it is your child do what you like. Give them whatever you like to make them behave the way that you want. Believe me I understand, I have been tempted at times to want to give Daniel something to try to help him during a violent outburst, but I didn’t. I couldn’t bring myself to give my child what could potentially be poison, but that is me. Reading all of those things brought me to a point of saying to myself “how is my child communicating to me?” “What is he trying to tell me?” ” How do I understand him instead of trying to get him to understand me?”  The one thing that really hit home was that I was trying to get my child to do all of the things that I myself as a child went against. I remembered that I was forced to behave in ways that felt wrong and it made me angry. I was being told that I was disobedient I didn’t understand why. I had a different way of doing it and it was more proficient. It was a more effective and an easier way.

I knew that I did not want to be anything like Jenny McCarthy, I didn’t feel right about Autism Speaks, and I wasn’t sold on giving my child medications like Ritalin, I took everything I studied and came up with a plan.

Every place I went to had good ideas, I took the good ideas and I used them. I pumped Daniel’s speech therapist and occupational therapist for as much information as possible. I studied them, I would watch them and ask them “why are you doing that?”. “What do I need to do to help him?”  When our insurance was about to end I asked them for any resources they could give me. The occupational therapist loaded me up, she gave me a ton of resources and told me about books that would help me do this at home. They told me about a gluten-free diet and possibly that was an option to check out. I did, I studied, I went to the library and got every book I could find on therapy, food, and autism. I am not saying that other parents have not done this I am just saying that I did not allow anyone else tell me that I could or  couldn’t do it. I believed I could help my son with his needs the way that he needed it, not the way that others did it for their children.

I see both sides of wanting them to just be fixed and wanting them to be accepted.

I have lived in that world my whole life. I wanted to be fixed and I wanted to be accepted. Through Daniel I found both because I realized I didn’t need to be fixed at all I needed to be understood and the first person who needed to understand me was me. Once I began to understand myself I understood Daniel a lot more. I stopped trying to make him do things, I stopped taking things away from him if I wanted his attention, it didn’t work anyway. I sat with him and as I sat I talked to him even when he was unresponsive. I tried playing his games, I sat and stared at things with him, I spun things with him, I ate things with him, I kept telling him  how much I loved him, I kept asking for a kiss but not forcing it, same with hugs and while I did these things Daniel started participating a little more. I used flash cards for words and asked him to show me what he wanted or what he liked. I was getting him and he thought it was great.

I believe we need acceptance and I also believe we need the therapies to help us be able to communicate  and cope in this world better.

Daniel may have learned on his own to talk more or eventually learn to feed himself but I wanted him to be able to do it so he could be empowered, so he could learn to be an individual. I didn’t want him to do it so I wouldn’t have to do it anymore, though I admit it is very nice having him tell what he wants instead of dragging me all over the house or hitting me, but the joy that is on his face when he says “want more yogurt mom” is awesome. He is happy because he knows his words have power to get things accomplished. He is still learning language but it comes alive for him in music and that is how I have taught him a lot of things to say. I sing them, if he would pull me to the refrigerator and point to the yogurt I would sing, “Daniel wants some yogurt, Daniel wants some yogurt, Daniel’s gonna eat yogurt, Daniel love’s his yogurt.” I do that with everything, I have always done it for myself so why not for my kids.

I have always made up songs for myself for specific tasks, especially ones I do not like such as the dishes.

“I am doing the dishes, yea I am almost done, oh, I can’t stand dishes but I am having so much fun.” Now picture a person dancing and using the dishes as a dance partner and there you have me my whole teenage life. Even now on occasion but David is such an awesome husband that he does the dishes most of the time for me. I will do everything else if he just does the dishes! I have observed Daniel his whole life and I now understand certain things about him like he likes green, he gets agitated on some days if he wears red, he thinks noises like clanging metal is funny, he can make anything spin, ceiling fans are the best thing on earth, and something I discovered the other day is that he doesn’t have a real perception of himself.

I found a video of an autistic child doing some similar things that Daniel has done in the past, but the main thing that he still does is a hum like singing thing that is a mixture of words that I cannot understand.

I showed him the video and asked him to watch it, I said “look Daniel he is doing some of the things you have done, look he sounds like you”. He stopped and stared at the boy and then said “I no watch this mom, I no watch this”. I asked him why and he looked at me oddly then I asked “is he like you?” and Daniel said “I not like that mom, I not like that.” I sat there thinking why would he say that because I know he is like that sometimes and there could have been several reasons, one he doesn’t understand his behavior, he doesn’t grasp the mirroring thing so of course he would not see himself like that, even though I have home videos of him doing the same thing, two he was telling me at that very moment he was not like that because he wasn’t doing anything remotely close to that behavior at the time, or three he doesn’t think he ever does those things and he believes he is just like Ariel and Joshua. I am not too sure about three and I do believe it could be a mixture of one and two. Honestly I do not know I just find it interesting.

As I watched the parents though I was sad because they kept using words like he is not there, we lost him.

There was one scene where the child was looking out the window and they wouldn’t stop calling his name, they just kept on saying it over and over in a high pitch annoying way. I wanted to tell them to be quiet, the child just continued to look outside, inside I just felt like he was studying something out there and whatever he was studying was bringing him peace in the midst of that chaos. I am amazed when the parents act as if they don’t know why their child is behaving this way but their home is full of new things like lights, cameras, new people, the routine has changed because they are filming and they question why the child is acting worse than usual. I saw one scene where the mother was saying he doesn’t talk, he won’t say anything to me, he doesn’t communicate but the camera got a shot of the boy and he was looking at his mother and he was reaching out to her and grunting, he was communicating and he looked as if he was terribly misunderstood.

There are many more videos and documentaries that I have watched and I see the same thing, the child is communicating but not in a way for the parent to understand.

I think maybe one of the answers of breaking the communication gap is to stop trying to get these children to communicate like everyone else. I know others agree with me and there are those who say it but they don’t really mean it. I don’t have any answers but a lot of the people in charge of running this Autism show ( I call it a show because that is what many groups have made it into.)do not have the answers either and I feel that as a parent I am responsible for discovering my child and helping him to find his way of communication, not my perception or anyone else’s of  how he should communicate. I am here to help him discover his strengths, work on those weaknesses such as motor skills for instance. I feel we do need therapy and a specific diet, they have proven to be beneficial for Daniel and myself. The therapies have taught me how to help myself as well. I don’t want myself or Daniel to be fixed I want us to find our way in a world that tries to make us conform to their status quo. I want Daniel to find his voice and learn how to share it with the world even if they reject it.

I will use wisdom and discernment to choose what I feel is best for my child and my personal view is that drugs or supplements are not the answer for Daniel, at least not now.

I haven’t made these choices based on emotion, random readings that have influenced me, or other people, I have taken this on as an experiment, we take all of the things into consideration, rule out the ineffective or possibly harmful things and go with Occam’s razor, what is the simplest answer right now, spending time with Daniel, finding his likes dislikes which are experiments in themselves, change diet and see what happens. Those are the ones we started with and I have found they opened us up to a world of very interesting family fun and new ways to communicate. He is doing well, he has decided to talk more, he is trying new foods, he is writing on days he feels like it, he knows how to spell, he knows shapes, colors and loves to count. All of these things have happened because I got to know my son, that is my journey and it has brought much understanding to my own world.

There is no easy fix to autism it is a great way to learn love, new ways to laugh, see the world in unique ways and it is always interesting.

I feel this dilemma inside, it is regarding how there seems to be two camps those who must have the cure and those who want to be accepted. I fall in between because I really do not know fully what it is like to have a low functioning autistic child for a long period of time, Daniel was low functioning in some areas and at the age of 3 yrs he was at 10 months, like speech and eating. I do know the pain of wanting to connect with your child, the feeling that he will be like this for his whole life, dreams may be gone, but I was ready for that. When I think of all of my children I have no intention of them leaving, though I want to prepare them to be on their own I have no desire for them to ever leave. If they want to stay home,  they can I have always felt that way. I don’t plan on parenting until they are 18 yrs. old and being finished. Understand me here, they are going to be fully equipped to be on their own and they are going to learn about the real world at home but they are welcome to stay, we have plans for all of that but I am not going into it. Anyway that is my thought process so when I hear parents say “is my autistic child ever going to leave the home?” I am confused. Why would you ask that? When I hear a mother say “I can’t go shopping anymore, I can’t just grab my purse and run to T.J. Maxx because of my autistic child.” I get confused.

My children are my life, they are not my identity but they are what I signed up for.

I take parenting very serious and I feel it is my responsiblity to think of their needs, sometimes to a fault but most times I keep a balance. I understand not being able to go shopping most times I cannot take all three children with me and at times there is no way I can take Daniel out of the house but to me it’s just not that important, Daniel is. I take care of myself but things like that are not a priority so when I hear it, it sounds very selfish. David says I need to consider where they are coming from but I find it very difficult. I have a supportive husband, I have a supportive mom and support from some friends who see raising children as seriously as I do so I guess I really shouldn’t think about how other people are or try to figure out what they mean. All I know is for me when we chose to have children, we chose a life long commitment that we knew would take precedence over other things. I don’t know if this is all coming out the way I mean it to, I hope it is. My perspective is different from a lot of other people, even when I feel like we are on the same page I discover we are not so I find myself alone in my thinking. I am not black and white when it comes to the autism therapies or findings but that is how I am different, others seem to be very clear and have all the answers despite the lack of data.

I will just continue to work with Daniel and do things that I see have proven to be beneficial and if new things arise I will research, see what I find and apply things that will be good for Daniel to find his voice and express himself the way he feels the most comfortable.

My brain is a mess, a lot to do with weather, lack of sleep, (kids coughing all night long) sensory overload, eating the wrong things trying to make myself feel better, knowing full well that it will make me feel worse, and the list goes on…and the list goes on. (to the tune of “And The Beat Goes On”) Here I am looking for information and resources to give to people about the “autism cure” what have you. I have found very many articles, positive information and articulate blogs that would be very beneficial to enlightening those who believe that autism needs a cure. But I have to remind myself that a large portion of those people do not want to be “enlightened”, so they can add it to their arsenal of “savior complex” missions without any regard or concern for those, who would so much like for them to see them as real people and just be accepted.

With all of the positive also comes all the negative.

I am not even going to comment on the information that I have found. I will say that the “autism cure” roadshow (I am being sarcastic) is extremely offensive, but I have to admit that there are many people with autism who are doing the same kind of actions and even attacking those in their community. It is all very frustrating. Just bring on the peace! I hold the view of acceptance, I feel the main thing we should be focusing on are things like  sensory integration dysfunction, since our sensory issues seem to be the reason we all have such a hard time.

I do question why so many funds are being spent on a “cure” and not resources or building into supportive communities to bring about acceptance and awareness.

I guess the real issue is what is being defined as autism. I know there are a lot of different factors when dealing with the autism spectrum. Those who are dealing with the low functioning autism, having many other developmental issues, I understand wanting to do anything to help their child, me too. Although, Daniel was low functioning at one point in many areas,  he has progressed in various areas, so it is different for our situation. I do not want to be so naive to claim I have all the answers. I only speak for myself and those who don’t want a “cure” or feel as if we are some abnormal part of society. We exist, we have for a long time despite the new found epidemic, the gene pool has been swimming for a number of years. It has not just appeared, and we are not a disease.

I have noticed that in a lot of the videos, websites, and blogs that the people are focusing on the outward things.

The obvious, like they were not talking and now they are, or their physical conditions, low muscle tone, the features of their face changed like no more black circles under their eyes, or they now have color in their skin. As I read all of this and see photos for myself, I notice that they are not talking about how the child is thinking.

Has the way that they process information changed?

Do they still study things or come up with different and unique ideas?

Were they on prescription drugs or are they now?

Has their mind been cured?

Then I have other questions  that pop in my head  about diet.

What kind of food were they eating before?

Were they eating a lot of processed foods?

What about fruits and veggies? (I know that Daniel has had a difficult time with food because of textures and I have had to be very creative in sneaking those things into his food.)

Then I wonder about their previous life.

What kind of activities did they do?

Did they exercise?

Were they watching TV all the time?

Did they play games constantly?

Are the parents or someone now spending more one on one time with the child?

I am just wondering because if they started changing things like that in their life then I would think they would show some sign of progress. If they have a good healthy diet they are going to do better.  So what was their lifestyle like before the parents decided to try these options that they are now claiming to have cured their child? When I see their information they make it seem like they did very little and got a huge amount of improvement. I would like to know all of the information. They usually show photos of the child staring or looking void and then pictures now that have them smiling and acting “normal”.  But lets be honest we all can do that and convince a world to believe something.  It just makes me question the motive.

When people are talking about a cure, are they talking about the outward appearance?

If they look normal, then they are normal? Has the child just found ways to hide their tendencies from their parents so they are accepted? Autistic children know what is going on. They comprehend what is being said about them, so are they trying to make their parents happy? I know that it has been claimed that they are not capable of emotion but I don’t believe that to be true. I just wonder what the children are feeling, do they feel like they had this horrible disease that made their family so upset that now since they are cured they are unable to express themselves in the way that is comfortable to them.What exactly is being cured? That is the question that goes through my mind, maybe someone will answer me.

Anyway I found this blog post and felt that it was very articulate about the autism cure question.

http://chaoticidealism.livejournal.com/75642.html

I have had it! I just want to write a post on something that is fun and happy. I have several blog posts that I have written and I just don’t want to publish them yet. They expose some of my thoughts that I am not sure I am ready to share. I want a happy, joyful post that gets me away from all of my seriousness and constant questions. My racing mind and the insane obsession with finding information about any given thing that pops in my head. I just want it to stop for a moment. One way for me to do that is to focus on my kids. This week we have been very lax and have spent our time creating story helps with our books, creating and playing. Well I guess that is school. Hm…

So here are some pictures of our week and some of the things we have created together.

There are some of Ariel’s paintings, our valentines that we created, Lego village that Joshua made, Daniel’s invasion of the kitchen table with all of his possessions that he needs surrounding him, (it is driving me crazy, complete chaos) and then our story adventures. This makes me happy. We all had a lot of fun and looking at these pictures helps to remind me to not be so serious all the time. Just sit back and enjoy life. (click on the images to make them bigger)

Simple is good and I just have to get to the point where I accept that there are some questions,  that just cannot be answered and I cannot allow other people’s ignorance or lack of wanting to understand take hold of my life. I gave this post the title for one very important reason, I really like saying “chick-a chick-a boom boom”, it makes me laugh. The best thing is when the kids and I march around the house reciting this book and make up our own chants as well.

Chick-a Chick-a BOOM BOOM!

Today started off on a very bad note. Joshua woke up way too early, he then woke up Daniel and Daniel came into my bed and woke me up. Ariel got woken up as well from Joshua turning on all of the lights and then the cat was awakened by the loud voice of Joshua saying “HEY, NATHANIEL” as he chased him, needless to say we all got up and the only one who was ready for the day was Joshua. He is a very energetic little fellow and we love him dearly, we just wish that he would sleep a bit longer.

I have already been feeling off for a few days so this didn’t help much.

With the full moon all of us have been very sensitive with all of our sensory issues. I have been exceptionally confused by any social interaction I have had and the kids have been very energetic, more so than usual. Yesterday Daniel started going through his cycle that for some reason I am never prepared for, maybe it is because I am going through my own and I am not able to discern things as well. He started talking in his high-pitched voice that no one can understand, except for me and only after I have asked him a million times “What do you want, I am sorry I can’t understand you. Please show me.”

He is also making noise, very LOUD noise.

Spinning wind up toys, banging doors, clanging plastic toys on tiles and glass, dropping metal on the floor anything and everything he can find. All of those things feel like daggers in my ears and they hurt my head so bad it is like icicles being pushed through my veins into my skull. It hurts, ok, it makes my body cringe and I have a hard time being able to focus. Joshua is very loud anyway, he has no idea that he is so loud and I know it is not me, other people have made comments about it too, not in a bad way, but he is. He talks, moves, plays, sings, everything you name it, he does it loudly. Ariel asks questions non-stop and when she gets very excited she has a high-pitched voice that she uses.

All of these things mixed together during this time is just a lot for me to handle.

They are wonderful kids so don’t get me wrong, I am not complaining I am just describing my environment right now. All three of them have been overly sensitive this week, for instance I was giving them a bath, I used the same exact shampoo I use every time and the water from the bathtub to rinse so I know that it was the perfect temperature because I spent 10 mins. making sure that it was, and Joshua started screaming at the top of his lungs “It burns! It’s burning my head!” and then  he screamed “AAAAAAAAAAAAAA, my eyes!” while I rinsed him with the water, which got no where near his eyes because if it does he screams.

All he did was scream, I quickly got him out and held him and was very confused.

Talk about overload, there is still more, I don’t like getting any part of me wet, unless I am in the shower, so when my clothes got wet from that I was having a hard time comforting Joshua, but I did. (Then quickly changed my clothes.) Ariel has been asking questions non-stop and getting very emotional about situations with her brothers. She has had several moments yelling at them to be quiet because they are too loud, as she covers her ears. She has been requesting alone time so she can paint and I have let her.

This week has been just a lot.

I am emotional for some reason, at first I was pretty happy and then I got just blah. Yesterday we spent the day with my mom and it was good but we went to a craft store and then to her house and we were there a lot longer than usual and last night I was just spent. Daniel was bouncing off the walls, he couldn’t go to sleep and I really didn’t want to lay with him because it is so uncomfortable, but I ended up having to, to help him calm down. I have had to most of this week, lay down with him and just hold him.

All of this brings me back to today.

This morning after we all woke up, Daniel out of the blue asks for his light green fan. I had no idea what he is talking about. He claimed that it was in the garage, so I go into the garage and look for it. It wasn’t there, he didn’t believe me, so I took him into the garage to see for himself. After he was satisfied, he claimed it was upstairs. I went upstairs and find nothing but then again I don’t know what I am looking for. I wake up David, I tell him what Daniel is asking for and ask him if he has any idea what it is. He finally realizes that Daniel is wanting a fan that we purchased over the summer. A small hand-held, battery operated fan. I haven’t seen it in months! I look all over the house, everywhere. Daniel was following me and I was feeling the escalation.

I finally tell him that I cannot find it, it is gone.

For quite a while I was the recipient of his wrath. I stayed calm, helped him to his room and let him sit in there for few minutes, for both of us. He wasn’t happy about that but after I got over my overload I went back in and we hugged, he was still upset but I got him interested in his gears so that helped. However, he was not giving up on the fan so I had to go to the store and I prayed the whole way there that they had the “light green fan” because it is a seasonal item. Thank God! It was there, I got a few just in case. I did not want to go to the store because as you can see I was quite overloaded from the chain of events but I had to. I had my list because we needed other things too and I held it tightly as I practically ran through the store so I could hurry up and get home. (David was having his own issues, we decided it was best for me to be the one to go.)

I just want to say how thankful I am for self checkout!

I got home and Daniel was happy. I put everything away as David played with the kids a bit longer before he had to go off to work and I sat at the computer. All I could do was find music to listen to, I just needed that time. I did not have enough time before David went up but he had to get to his work. I gave Ariel an art project, painting by numbers, I gave Joshua some toys and food and Daniel was perfectly happy now that he had his light green fan. I put my head phones on (The position of my desk allows me to see everything so I know it’s ok to have my head phones on.) and I cranked up my music and just let it consume my brain. Then the tears just flowed, I couldn’t stop them, I don’t know why I was crying I just was.

I wasn’t listening to sad music, there was nothing I thought of, the tears just came.

I was overwhelmed with sadness. My mind was filled with questions and wanting to know my purpose. Why is my brain so different? What is wrong with me? Why am I sad? Why can’t I handle these situations? Tears, tears, tears. And many more thoughts and questions flooding my brain. I turned off the music and I got up because I needed to be with my kids. Daniel came running up to me and I just said “Daniel, Mommy is sad”. He looked at me and took his little arm, touched my leg and said “Mommy’s not sad”. I looked at him and said “Yes, I am sad”. Just to reassure him because I was not ready to get out of my sadness.

He looked at me, gave me a hug and said “Mommy’s not sad, Mommy’s happy”.

That was the first time he ever acknowledged feelings and then did something to bring comfort. I was still sad but I was very happy at the same time. The tears came again but for a different reason and Daniel looked at me with concern. I told him “You are right Daniel, Mommy is happy”. I wiped my eyes dry and smiled at him and I asked him if I could have another hug. He gave me a full on hug and he held me for a moment, just squeezing. He then looked at me and said “Daniel is happy”. Out of all this stuff that has been going on and through my meltdown who would have thought Daniel would have a first time moment of recognizing an emotional need and then providing comfort. I am much better now I still feel blah, but I am not sad.

Ariel, my baby girl, had no idea about any of this, she had no idea I was sad because she was quietly painting and to my surprise making me a card that said “Ariel, I (heart) Mommy, I (heart)”.

She brought it to me and said “Here Mom, I made this for ya”. My sweet Joshua had noticed earlier that I had some tears and he brought me some tissue, with a little smile he handed it to me and then went and cleaned up his books for me. My kids are awesome. I so wish that I didn’t have days like this, but then I quickly change my mind because these days are what makes it so worth wild. I know my sensory stuff and their sensory stuff will pass and come again, some days will be better than others but if we didn’t have such intense times we would never have the moments with the unexpected surprises.

I wouldn’t have those days where I say “who would have thought”.

Several years ago there was a guy who I deeply cared for, I still wonder about him and hope he is doing well. He opened my eyes to a lot of things and he hurt me. He hurt me to the depths of my soul. Why so deep, because I don’t know what I did wrong. He just all of the sudden cut me off from his world and never told me why. I still do not know, I felt we had a really great friendship. I felt that we really connected. There were times when I just looked at him and felt that we just got each other, there was no need to speak. Then there were times when I felt derailed, confused, misunderstood, and shut out.

What was this, what were we?

I really do not know, but now I can see a lot of my Asperger’s shining through, in hind sight. I didn’t know how to read the cues. I remember one time he said to me “you are one of those girls” and I said what do you mean? He said “a girl who always has a guy waiting”. I was very hurt, why would he think such a thing. Then I got angry, how dare he say such a thing! It wasn’t true and I told him so. I was fully capable of taking care of myself and I did not need any man to help me! I have taken care of myself my whole life, who was he to say that? I quickly forgave him and moved on but as you can tell I still remember the words, I remember that I was driving my car, where we were going and what we were talking about. (cleaning my cats litter box started it, just saying)

There are several things that he did to try to fit me in a box with, one being my Christian point of view.

I was not  a typical Christian and I still am not. I do not hold the point of view of the masses, though I am finding many more like myself, we do not have the loudest voices. The other folks do, those who make it out to be in a very negative light. There were differences in our beliefs and at the time I was hard-core fixated on, I guess you would call it an evangelical point of view, I was constantly studying so of course there would come a time when I would no longer hold such a black and white point of view. I actually didn’t then but it was what my church or the people I associated with represented and he had taken that view of me. He thought he knew me. He did not. He was unwilling to get to know my true views or where my beliefs took me. If only he would have discussed these things with me he would have realized that all I was saying is that Jesus loves you wherever you are at, find your journey. But he didn’t, though we seemed to share a deep friendship he was not willing to find out my thoughts or feelings.

I do have to thank him because if it wasn’t for him I would not have stepped back into reality.

Because of him I really began to question the very scriptures the church used to force me to be “obedient”. I started praying to God and asking for clarity. Then I began to re-read the gospels with a different perspective, seriously what was Jesus about? Well, He was busy running with people who the “church” people wouldn’t run around with and I felt the Lord told me I was wrong. I had been isolating myself from non-church goers and that was not being very loving. Even though I did love people I was not being loving. I was not accepting them where they were at, because that was the script I was given.

My script was changing, I was now released from a bondage that had me for several years.

It was a bondage that fits right into my AS, it gave me right and wrong, it told me that since I did not hold a degree in the area of say, Biblical Foundations, I was completely unqualified to question or doubt anything a leader who did hold some sort of degree. Well that seems about right? ( Though that didn’t last long and I have been in a little bit of trouble for questioning authority, I never try to defy authority, I just seem to state the obvious too often.) It obviously took a while for me to get my mind back and to come to terms with the grey areas. I remember one day my friend had asked me if I had ever seen the movie The Big Kahuna, well of course I had not because I had stopped watching R-rated movies for several years. When things started changing in my thoughts, my heart, my eyes were opening that was one of the first movies I watched. As I watched the movie, I cried, I felt sick, I was changed, and I knew and know today, I NEVER want to have an agenda. Great clip from the movie, I got it! The Big Kahuna Clip

I hope he was not implying that I was not honest!

I don’t think that is what he meant, but I know that I do not want to be known for marketing Jesus. I never meant to do that, all I have ever hoped was that I was loving people the way Jesus expressed it. I have this longing for people to know that they are loved, they are worth something, they do have purpose and they are not alone. I guess it could be because that is what I have longed for all my life. I found that through my beliefs, not because I am weak but because it made sense to me. It helped me feel ok for not fitting in, I found that God created me to be different, though that is said throughout church they do not really mean it, but God does. I am free because of my beliefs if I didn’t have these beliefs I would have never questioned them.

If I just went about thinking I had the answers, I would not have gained all of the great information and new found fixations I have now.

Sorry I went off track, what am I trying to say? He did what every other person has done to me, he made an image of me and kept me there. I was no longer a person, but an object. I wish he would have talked to me a bit more, I wish he would have hung in there a bit longer, but he didn’t and so I had to do something to get him out of my life, um…out of my mind. He had already cut me off I was the one that kept trying to contact him, so to help myself I wrote him an email and said what I felt God said at the time, and I never spoke to him again. I needed closure, though I did not get it and I have been fixated on him through out the years. Not a weird obsession but wondering about him, wanting to write him, wanting to know why he would no longer have anything to do with me, but I never did.

He made such a huge impact on my life that I just wanted to tell him somehow.

So I wrote this for me and for him. I believe my Asperger’s has caused me to not be able to let this go, I feel that the confusion has left me in a constant circle where I can find my peace about it, but then in my brain cycle the whole thing comes back up again and I cannot let it go. It doesn’t make sense, everything seemed very sudden, random, and there was no communication. Why? I may never know but at least I can go back to this and remind myself that indeed I may never know.

The place that we worked at was one of the best places I ever worked.

I met a great bunch of people, I learned so much from all of the people there. They helped mold me into where I am at now. Every person that has come across in my life has meant something to me, they have taught me, whether good or bad, or showing me love or hate, they made an impact and helped to open my eyes a little bit more every time. My mind is different, I am effected in different ways than other people, just like any Apsie can attest to, I do not understand the world in the same way. I can feel so incredibly naive at times, sometimes I feel like I have so much information that I am going to explode. Information is not the same as knowing, some things I know better than others, somethings I just have more information, somethings I am completely clueless until someone brings it to my attention.

This happens to be one of those moments, I am completely clueless.

This friend of mine reminded me of how much I love all kinds of music. How I love movies and the impact they have on me, which led me back into art and how much it makes me feel alive, leading me into dance once again and cultivating the passion I have for writing. Granted he didn’t single-handedly do this, there were many impacts from people and God revealing to me His presence in everything, my husband who has taken the time to build into to me and help me find myself and of course my children, just to name a few. Although thanks to this long-lost friend my life changed and went down a course I never imagined because I had limited my imagination.

Thank you my dear friend, ok, bye.

Lately Daniel has been claiming the color green. I have been wondering why he would claim a color. He has always been partial to green, when he was little I noticed that he stayed more calm when I put him in hunter green or slightly lighter shades of hunter green. I also noticed when I put him in red he would be more aggressive than usual. The first time I noticed this was one day when he was about two yrs old he was having a rough day, I ended up having to change his clothes, he was wearing red and I changed him into something green. I thought maybe he had just snapped out of it or something.

However, I noticed the change and I decided to test it out.

Sure enough every time he was in red he was more aggressive and just seemed unhappy so I would put him in green or a dark blue and he would have a shift in his mood. I decided to only put him in deeper colors like burgundy, hunter green, and dark blues. He seems to be ok in light blues and mustard colors as well but not bright greens or yellows. He gets very hyper in those colors. It is very interesting. I did a little research on the subject and found that indeed colors can effect our moods, the clothing we wear can make a difference. I have always had issues with wearing very bright colors or certain patterns. I can feel them, it’s like they are attacking my skin or something. I wore black most of my teenage life. I was depressed but I wonder how much of it had to do with me trying to control my emotions, who knows.

The other day we were in the car and in the back Daniel yells out of the blue “green’s mine!”.

I turned around and said “what?” again Daniel shouted in a very jolly happy tone “green’s mine!”. He started laughing and he thought it was very funny, as we were all laughing he then shouted while giggling “Joshua is blue!”. Hmmm….this got me thinking and then he went on “Ariel is red!”. Ok, of course I had to ask “what color is Mommy?’. He said “red”, “Daddy is light-blue” and “Grammy is green like Daniel”.  I asked him all of the family members I could think of that he knew and he started labeling the girls red and the boys blue so I thought this is strange I wonder if it is just a girl/boy thing but what is up with the green?

I decided to ask him about his Sunday school teacher he had that day and he said that she was yellow and the other one, who was a guy was red and blue.

Interesting, I have no idea what he is measuring or what it is about. I know I have seen colors around people and people say that is an aura, sure I can see that but I wonder what it is really about. David said it could be Daniel measuring the degrees of Asperger’s he sees in a person since he and my mother have many of the same characteristics, David and Joshua have similar traits and Ariel and I show similar traits. But that doesn’t really explain the other people who share the same colors who show no signs what so ever. It still is an interesting concept. It could be that he really likes green, Grammy likes green even though she doesn’t express her likeness for it but he just knows, Ariel and I both like red and Joshua’s favorite color has been blue since the day he was born.

Joshua has grabbed everything blue and claimed it for his, even as an infant.

Daniel could be claiming green like Joshua has claimed blue, we do tend to get Ariel red things, Daniel green and Joshua blue. It could be nothing more than that or he could see people in color. I do that and I have always steered clear of people who seem to have a blackness around them it makes me uncomfortable, I have noticed that those same people Daniel does not want to be around either. Although that could be the vibe that I am giving off and he feels it. Anyway maybe we will find out as he gets older, maybe not but as for now Daniel has dibs on green, just so everyone knows.