Mind Retrofit

Archive for February, 2010

This past week Ariel has taken a special interest in being with Daniel. She has been by his side for days. She has shown an interest in fans and all sorts of spinning things for hours. She transformed the kitchen table into a “Fan Table”. She has moved her chair next to Daniel’s and they have been playing together with all sorts of spinning fun. She has also taken on spending time with Joshua and they have been building the entire 6 movie Star Wars adventures spread across the living room floor. Since she has been spending so much time with Daniel, he too has joined in the Star Wars adventures.

I am not sure why she started this and I have asked her about it.

When I asked her why she was acting like Daniel and playing with fans and other spinning things she said the same thing every time I asked, “every where I go I see Daniel, when I am painting, playing, whatever, I see Daniel and I want to be like him”. Since this was unusual behavior I had a hard time letting go. She had never taken on his mannerisms for such a long period of time, she had never talked like him before or taken such an interest in fans. I found it quite interesting and a bit confusing.I noticed the behavior after we had gotten home one day.

Ariel and I went out to an all girl event for the day.

When we returned Ariel was highly emotional and latched onto Daniel. She had such a great time and she seemed very happy. I think she was still happy but I am not sure about her change in behavior when we got home. I thought maybe she felt guilty for leaving the boys at home, or if she really missed Daniel because he is her twin. I thought maybe she felt as if she could help Daniel not feel left out but Joshua didn’t go either so I really am not sure. We have said on several occasions that we cannot go out because it will be too much for Daniel, so maybe she thought she could help him. I really don’t know and I am not sure she does.

Whatever the reasons, some really great things have come out of her hanging out with Daniel so much.

Last night all three of them pulled out tons of toys, they set up palm trees, got out the play food and cars. Joshua told me that they were on an adventure, Daniel chimed in and said we are going to the beach, Ariel said I am making lunch at the beach. Daniel was playing make-believe and actually getting into it. They all three had their adventure it was great. Ariel and Joshua have been pretending to be dogs for quite some time now, early this week Daniel started being a cat. He told me “I am a cat, mom. Meow”. And he went around the house acting like our cat Nathaniel. He has been doing it off and on all week.

Daniel and Ariel have been having some serious conversations about fans this week.

I have noticed them talking at the table together. It is pretty great to watch them interact together like that. I am amazed at Ariel feeling the need to be with her brother and her actions have helped him get into a another dimension of play. All three of them like to have their alone time, Ariel and Joshua have been the ones who normally play together, so to witness this new kind of connection between all of them has been really great. All of them have been sharing, talking, coming up with ideas and having fun.

Daniel has been talking a lot more too.

Daniel surprises me sometimes with the things he says, I get it in my head that he doesn’t know what words to use because I am so accustomed to him not speaking in sentences that flow but then all of the sudden he says something like” Mom, go push the button on the computer to turn it on”. I sit there thinking “did I really just hear that?” or he will  joke with me,  like come up to me and say ” I am not Mommy’s Daniel, I am Daddy’s Daniel.” Totally amused with himself he will laugh and then tickle me. Since Ariel has been spending so much “special interest” time with him he has been doing these kinds of things a lot more. It is really great to have my kids mess with me! I love it! Joshua has always taken a vested interest in trying to get Daniel to play with him and I think that has helped quite a bit too but to have both of them come together and want so much for their brother to be a part of their fun is really great.

It is truly amazing what siblings can do for each other.

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The other day I showed Daniel the beginning of “Puff the Magic Dragon”. It was this part watch?v=R6wJqdnMUEk. I wondered how he would respond to this. I had watched it several weeks before because of a documentary I had watched. I remembered as I watched it how as a child this movie always made me feel sad, heavy and like there was some sort of foreboding over me as I watched it. I never understood this, I still do not but I still have the same feeling as I watch it.

I find that odd since I really love dragons.

I had a pet dragon (not real) while we lived in Germany, we went there when I was 4 weeks old until I was 2 1/2 years old. The whole time there I had a dragon, that lived on our balcony and he went with us everywhere and my mother had to open the big huge doors for him everywhere we went because he couldn’t fit otherwise. He stayed in Germany, when we got back to the states he was no longer with me. Maybe he couldn’t fit on the plane. My love for dragons stayed with me all through out my childhood and even now, though I gave them up for a while because “fundamentalists” informed me that they were evil but I believe that they are wrong. When I saw “Puff the Magic Dragon” I thought I would enjoy it, so did my mother but I didn’t it made me sad.

I wanted to know if Daniel would show any sign of relating to Jackie Draper.

I do not know if he did or not but something happened that I have never seen Daniel do before. He was watching the video and when it ended it looped back to the beginning, I heard Daniel say something and I came up to him. He pulled the earphones off and said “I no watch, this mom”. He had tears in his eyes. Daniel doesn’t cry like that, the only time I see him cry is with tears of frustration or pain if he gets hurts but never a cry like this. He had a look on his face that I have never seen, the best I could decipher was fear. I think he was scared. I am not sure, he just kept blinking and had watery eyes. Tears never fell but he was clearly shaken. I held him and asked him what was wrong. He was unable to tell me, I asked if he was scared, he said no, I asked if he was sad, he said no.

I do no think he knew how he felt and I understood that completely.

I dropped the subject and he held on to me tight and I just rocked him. Not much longer he was ready to get down and go about his business as if nothing happened. Then yesterday the same thing happened. He was in the bath with Joshua, I went to get towels and all of the sudden Joshua starts screaming at the top of his lungs. I run in thinking that something horrible had happened, I asked him what’s wrong and he just kept screaming and pushing on Daniel. I pulled him out quickly and tried to calm him down. I found out that he was screaming because the bubbles were touching him and he didn’t want the bubbles to get him. I think I am going to need to pay more attention to Joshua’s sensory needs.

I came back into the bathroom and Daniel had that same face as when he watched the video.

He was saying “Mom I want out of the tub, Mom I want out”. He was blinking, his eyes were all teary and he looked, the best I can say is scared. I don’t know if Joshua frightened him because he was screaming, or if he was just as confused as I was at Joshua’s reaction, or both. I got him out of the tub and held him. I asked him again if he could tell me if he was sad, scared, or mad or anything. He told me no to all of those things and then responded with “Daniel is happy”. So I dropped it. But it is hard for my mind to let it go because my baby is clearly showing some sort of response that I do not understand. I was hoping to be able to help him find out what he was feeling but that seems rather silly when a lot of the times I cannot express what I am feeling.

I think it is a good thing and the fact that he is responding to comfort is good too.

In fact he is seeking it which is new, so I think that is good for him. It could be something to do with sensory. I know that when I get overloaded or I am socially confused I do feel emotional. I am not sure what it all means but as long as he is not shutting down and communicating to me I think it is something positive. I just need to stop analyzing so much sometimes and just hug my kids. That is hard for me to remember, I always want to know why they need comforted before I comfort them. I am getting better at this, I have become aware of my actions. Instead of saying “Why are you crying, tell me why you are crying so I can fix it.” I now just pick them up and ask at the same time. LOL! I am working on it!

It takes time and with a brain that continually forgets these things, I pray for grace over me and my kids.

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.

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