Mind Retrofit

Archive for the ‘Personal Rants’ Category

I think that it is great that so many people say things like “what is normal” and “there is no normal” but honestly a lot of them are the social norm and it is hard for me to believe that they are willing to accept anything that is completely different from them. Though, I too love the idea of their being no normal. The truth is there is an unspoken law between humans that there is a line of normalcy that should not be crossed.

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

One day I woke up into the world of autism. A world I knew virtually nothing about. The very word autism brought a fear that I didn’t understand but was the only thing I knew from that word. I could not accept that my son was autistic. I was in a community that would not allow it. I never let those words slip from my lips around their presence. I couldn’t, the unspoken words and the words that he must be healed from his ailments was enough to frighten me into silence.

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

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Do not worry I will not bore you with the details of how Valentine’s Day came about, though it is quite a restraint for me and all I will do is this,Valentine\’s Day. Wikipedia will give the just of it. I had to do that, I had to have something on here about the history. Alright, so me and Valentine’s Day, well I have to say it is another tradition that has not been one of my favorites. However, making it into a positive with my kids has been really great.

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.

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!