Monthly Archives: May 2009

05/29/09

Poem Regarding Certain People’s Love

Soul Thief

Lights went out all is dark.
Life is filled with snide remarks.
Some fake replies.
Can you be real and let go of your lies?
 
Mindless banter use other’s words;
try taking action and stop being so absurd.
Stop your religion and set people free.
 
Hold on tight to your creeds;
your loving acts are senseless deeds.
Continue on your quest for right but don’t hold people in your might.
 
You don’t see, you do not hear,
all you want is the crowds cheer.
Oh, how great and so pristine,
with your holy life so pure and clean.
 
Yet you say oh, I am such a wretch,
I needed Jesus to get me out of my ditch.
So on and so on your flattering words.
Empty and vacant leaving us without hope but you have yours.
 
Sad and lonely you will always be,
taking and taking for eternity.
Living your life at the expense of ours,
saying you love us as you wound us and leave scars.
 
Thanks so much for stopping by,
taking my life, sucking me dry.
Let’s meet again when you need more a fill,
this time I’ll remember I am not paying your bill.

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05/29/09

A Poem Regarding the Great Escape

Here is some of the emotion I felt during that time.

Leaving Them Behind

Falling, falling, falling face down
where is my stable ground?
Shifting, spinning out of whack,
yes it is a panic attack.

What kind of fear what kind of sense;
can derail me from being in the right state of tense?

Who are you and what am I doing here?
So many questions, can’t comprehend who’s near.

Drifting, drifting, to my quiet place,
no one knows I keep the same face.

Cannot recall what they really mean.
I am in a state of constant but never seen.
They have no idea who I really am,
nor will they take the time to understand.

Shaping, molding into the right place.
Not on your life, no mold can I embrace!

Yelling, kicking, screaming inside,
not much longer can I hide.
I have disdain for your feeble tales,
talking of nonsense, as boring as snails.

Left you all and you didn’t notice!
So is it true you never really cared?
I bet you would if the mold would have prevailed.

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05/21/09

Take a Moment Here

I would like to take a moment and express something about my writings regarding church or religion. I am a Believer in Jesus Christ. I have a perspective from a non-denominational point of view, I guess. I have no problem with other denominations. I do however, have a problem with people who claim that their denomination is the only denomination. Or their church is the only one with all of the answers.

Let’s be open minded.

I hope that this doesn’t hinder anyone from reading my experiences or poems about my emotional dealings with church. My biggest beef is with religion. I have a problem with” religious” people. That goes for any religion and philosophy that deems itself being the sole knowledge on any given subject. When it comes to God I feel He is a mystery. The Bible states that we cannot know Him fully. That may sound like an oxymoron coming from a Christian who claims that Jesus is the only way.

God loves.

I used the word “knowledge” for me that means information, ritual, or revelation that states it has the sole wisdom on the subject of God. I believe God will meet us wherever we are at and He will do whatever it takes to show us how much He loves us. He invaded my life while I was not going to church and I was living a lifestyle according to some that would have God as far away from me as possible.

So let us not limit God.

Though the Bible also says we have the mind of Christ for me I feel that means we have the full knowledge of how we are suppose to live. Jesus gave us an example throughout His ministry. We have the mind of Christ when we are focused and living out the life that Jesus showed us how to live. For me the mind of Christ does not mean we have hidden knowledge or revelation into the insights of God. How can we?

Let’s agree to disagree.

I know there are those who would disagree and I am ok with that. I am not trying to convince anyone to believe what I believe. I am open to listening and communicating with people of other faiths. We are not limited to one social group and I HATE labels.

Bottom Line.

All of that being said I would like to point out that I am attacking the system of man not the man itself. I am attacking my own false pretenses and expectations of God and man. To me the system of man sees fit to destroy other human beings for the sake of their own personal gain. It is a system which fails to recognize the value of others. A system that uses peoples gifts and talents as a means of selfish gain. A system that demands others to submit to their agenda or be faced with damnation. Not eternal damnation but social damnation. In some cases even the threat of eternal damnation because you have gone against the status quo.

As I write and gain freedom in my thought life and from my social anxieties I am gaining more understanding of myself. I am able to articulate the pain that has been in me but I haven’t been able to communicate. The religion I am talking about is not limited to church, temple, or synagogue. It is in our families, our friends, our work place. The religion of social cues and status quos. The demand to be the same so you don’t rock the boat.

My faith is a large part of my life but my writings can be applied to many situations and people who have been hurt by some sort of religion.

http://dictionary.reference.com/browse/religion

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05/21/09

A Rant to God

“I am so angry and I don’t want to say why. But I have to get it out it is driving me crazy. God these people, what they do in the name of love. How can they say they love? I have tried to reason and go through my head over and over again. I continue to want to think the best. I can’t. I turn on the TV they are there telling people to get out of debt give them money. The churches we have been in the last few years demanding our loyalty to them. If we do not follow them or the next big “Christian fad” then we don’t hear from you. WHAT? Are you serious? I am supposed to listen to a person who is controlling and manipulating people to get my money or to make them feel better? Disillusionment. I have been swindled. They tried to take my mind and make me believe that I am not worthy unless I believe them. I am not capable of reading the Bible and know what it means? Hello! They don’t even know what it means half the time. How can I believe a person who gossips, slanders, lies, and isn’t even pretending trying to be nice?

God these are your people? I cannot not even function anymore. So much damage has been done to my brain that I have to do a major renewal. I have to rethink everything I have been taught about you. They tell me I don’t know you that I am not able to hear you clearly. Yet, before I got there I heard you plainly and I listened. Sometimes I did what you said sometimes I didn’t. But now how do I know it’s you? I’ll tell you how, I know you. God I know you. I know who you are. You are love, joy, peace, patience, kindness, goodness, faithfulness, gentleness and self-control. You are love. You said we know people by their fruit. Let me have good fruit. Take care of all of this damage that I have built up over the past years in church. Lord You know what is good for me. Make good in my life. I am done with holding on to the past. Set my feet on my future. Thank you God thank you for this life, this joy, this moment with you. I love you Lord. You have shown me life”.

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05/21/09

The Great Escape

I wanted so much to get back into ministry and “do the work of the Lord”. (OK) So I jumped right in. I began to serve in many different areas. I got overwhelmed. The church was much unorganized and would do things on a whim. Not good for an Aspie. I would come in and expect one thing and it would change or the even more confusing thing was “we were never going to do that”. WHAT? I have a very good memory so when things like that happened it really messed me up. Not to mention this group of people hugged and touched all the time. No, no, no! If you didn’t look them in the eye they thought you were hiding something from them.

 

It makes me very uncomfortable to look people in the eyes.

I was trying to escape what was going on at home. Yes, I wanted to serve and that was my heart. However, I see now that I had other motives as well. I hadn’t realized yet how it was so much more important to serve at home fulltime and not stretch myself thin trying to focus all my energy at home and church. I tried to explain to people what it was like with Daniel and they just didn’t get it. The attitude felt as though well serving in church is more important than anything and if you can’t do both than you are not spiritually mature. I am still working through a lot of stuff dealing with the people at this church. There were a lot of unspoken rules and social dynamics that I just didn’t get. I won’t get because of my AS.

Love? Really?

They seemed to be ok with people lying, gossiping, slandering, and they even rewarded those people with positions or special tasks. Implying that it is the love of Jesus to let people talk about others and misuse your words. It is just baffling to me.  In my opinion it is not very loving to allow the ones being hurt to be victimized and belittled. Forcing those who do not operate in these things to feel like they are not sacrificing enough or worse yet they are the ones who are not loving. The words were never spoken but you were always being compared and threatened. If you didn’t conform to the group then you were in trouble. If you questioned anything the pastors said or did you were in rebellion or had a demon.  Well not everyone thought you had a demon only the ones who were gossiping.

 

Got fed up!

 

After a year and half of complete confusion, questioning, exhaustion, and desperation I said wait a minute. I am not wrong here. So I looked at my family and I looked at me. We were all wore out, tired, angry, and Daniel’s progress was very slow. We prayed and we felt like the Lord gave us the answer to leave. It took several months, I gradually backed out of the areas I was serving. And we slipped away as quietly as we came. But I left with a lot of scars. I was still hurt, confused, and angry. So I went off on God a bit. You can read it in My rant to God.

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05/16/09

He Doesn’t Talk!

Daniel didn’t speak, for three and half years my son would not tell me what he wanted or needed. He couldn’t, he would scream, kick, push, punch, ram into me, pull me but not tell me what he wanted. I spent my day guessing, asking, and pleading. This was hell. I had two other toddlers to take care of. I was loosing my mind and I felt like it was never going to end.

But then…

About six months ago he started to take me to what he wanted regularly. I remember the first day he grabbed my hand and took me to his bottle and put my hand on it. It was a breakthrough moment. Since then his tantrums started to get better but they were still very aggressive and he was going after his twin sister and little brother at times. We all have felt like an abused victim. They would watch me and all I could do was stand there and take it. It would make my sensory issues go in overload, if I didn’t just stand there I was afraid I would snap. I would have to shut down and go in my own world for the moment it was the same place I went as a child and as an adult when I couldn’t take whatever was going on around me.  But then Ariel and Joshua began to do the same thing and it broke my heart.

I had to change something.

I worked with Daniel and I still am. Talking to him all the time and trying to show him in pictures and action. Finally about three months ago he began to speak in sentences and is able to tell me exactly what he wants. He is not speaking in complex sentences but at least he can say “I want ba ba”. This has made for a more peaceful life. He still has tantrums but I can recognize now when he is throwing a fit and when something is truly wrong. He usually has one when his sensory integration is affecting him in a huge way.

Another major factor for us is our diet and lifestyle.

When we are not getting the right foods or the sleep we need it can throw our whole world off. If there is a change in our schedule, our day doesn’t go as planned we get very upset. It will put me in a mood all day and I try to get out of it. Most times I can’t and I have to just get us out of the house and let them play at the park or the beach or the backyard. I try to use this to help me not focus on the fact that my day is all screwed up. Sometimes it works sometimes it doesn’t but it does help me focus on getting the kids occupied and that gives a bit of comfort.

Oh the sensory stuff.

I totally relate to Daniel with the sensory stuff. I have my own I can smell something 10 miles away. Sometimes the hum of the air conditioner will drive me insane. If someone touches me unexpectedly, even when expected it feels like they are breaking my bones. Some people’s laughs make me so angry that I have to get away from them. The sight of cottage cheese can make me feel like I am going to puke!

So sensory stuff I understand.

I have about a billion things I could write but I won’t. Daniel however has had the added challenge of not being able to communicate what is wrong. He is getting better. When his brother and sister are too loud he will go in his room by himself. If I am making too much noise with the dishes he will move me out of the kitchen. If he doesn’t like the feel of his clothes he will push them away and say “no, no”.

I can’t imagine.

Whatever is bothering me I usually blurt out without thinking. Like in the middle of a store I will loudly shout “Oh my what is that smell?”. Or if it is too loud I will proclaim “We have to get out of here!” and “I can’t take the noise!” But Daniel has not been able to do that and we have taken him into situations that have caused both David and I a great deal of stress because of sensory overload. For some reason we thought since he was a kid it shouldn’t be as bad. We were wrong. It had to have been worse. We are supposed to protect him and help him but we didn’t understand. So we move forward and do the best we can now with our new understanding.


 

 

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05/15/09

Hit My Wall

My wall

About a year and half ago I hit my wall. I was under a huge amount of stress. David was working from home but he didn’t have an office so I had to try to keep two three years and a one year old quiet. Not happening. Daniel was at his worse, every day he was flipping out. While we were in another state, we couldn’t find a church home or friends to connect with so for almost five years I was with the kids and David. We had many connections with multiple churches but we were not connected. I didn’t get out of the house. It was very hard. So when we moved here I was desperate to meet people and get out.

No one gets it.

We started going to a church it seemed good at first. Let’s just say it wasn’t the right fit for us. People really seemed not interested in what was going on with us especially Daniel. I would try to tell them but it seemed like they heard the word “autism” and that was it “we are praying for healing”. So I started just saying he had “sensory issues”. It was just easier. I wanted him to be healed but I didn’t really understand what that meant. For me I just wanted his pain to stop and my pain to stop. I couldn’t share with anyone there what I was feeling. When I tried to share with them what life was like for us and they were very uninterested.

I was misunderstood, unheard, manipulated to feel as though I wasn’t “spiritual” enough, and really hurt. I actually take responsibility for most of this because I was trying to get people to understand who are not capable. Not because they are not intelligent enough but because they operate in a system that is not the same as mine. I tried to get them to understand my system and they don’t want to they are perfectly happy with their system and either you get on board or you get out. So we got out.

This is how I have felt at these times with Daniel.

My screaming child, what do I do?
I tried all I can to help you.
Your pain so deep.
Oh, God why can’t he just communicate?

Tormented by things I cannot see.
How do I comfort you please, tell me please?
There is something wrong I know, I can see,
just give me the answer so you can be free.

My heart is breaking before my eyes.
My little boy as he sits and cries.

Nothing I can do.
Nothing I can say.
He is tormented each and every day.

I can’t comfort my little guy.
I am getting angry too; what do I try?

No one understands.
No one feels the same.
Watching my son in so much pain.

God help him, help me!
I can’t take it anymore.

What do I do?
How can I say, I just can’t take this one more day.

He is my son.
I love him so; but something has got to give;
I have got to know.

How do I help him and me today?
Give me the ability to go on another day.

Tired and weak.
So deep is my cry.

Help my child be at peace today.
Take away his pain and fears so he can play.

Just let him be happy let him have fun.
My little boy I see in his eyes;
glimpses of joy and laughter they come.

They give me hope I know he is in there;
waiting to come out with no more fear.

My little boy will be free and live a most joyful life;
full of laughter and peace.

All is quiet the screaming will cease.

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05/15/09

Concerned About the Food Issue

We took Daniel to a food clinic and they wanted to do group therapy we knew that wasn’t going to work, we just knew. He never did well with group setting with his peers. We are very thankful now that we did not do it because the therapy would have been quite stressful for him and could have made things a bit worse. Still I knew in my heart there was something more going on.

I needed an answer.

David started researching his behavior and recognized Aspergers immediately.  David had always felt he would just come out of most of this stuff. And he was right in a way. All I heard was “autism” and I was scared. We moved and found another doctor who knew right away that Daniel had Aspergers, her nephew was AS. She did send us to specialist and therapists. We were able to get him started in speech and occupational therapy. This only lasted about 8 months then our insurance ran out so we had to stop. He made huge progress. They gave me resources and information to help Daniel and work at home.

 

What now?

I would like to say that  I was a saint and did everything to find out what to do but I didn’t. I went into denial. I was like ok, so he shows these signs but if I pray hard enough it will all go away. If I just work on his therapy  as much as possible it will stop. That didn’t work. I would see huge progress and then he would go ten steps backward. It was very confusing and painful. There was a bigger issue though, I was being very selfish. So what now? I tried to escape.

I have a lot more on the escape issue but it will be several posts that I do. It took a while but I finally moved forward but it took a painful experience and a long look in the mirror.

Happier Days!

I am happy to say that Daniel is still making huge progress. He is now eating crackers and a variety of crunchy foods. He tries foods that I never thought possible. He may not eat them regularly but he takes a notion and just picks it up and tries it. I usually set out a bowl or plate with the same foods we are eating and sometimes he eats it sometimes he doesn’t. Working with him has brought him where now he is speaking in sentences not as fluent as his sister or brother but he is communicating which has made our world a much happier place.

Progress yes!

Daniel has come a long way just in the past five months. It was only a year ago that he started feeding himself. He is starting to dress himself, do interactive play, participating in art class, talking to his sister and brother. Just the other day he looked right at me and said “I love you”. I have poems I wrote to express that moment.

Everyday gets better and better.

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05/15/09

Confused

 

From the beginning I had this feeling that something was different with Daniel. I couldn’t place it but I felt it. He would just scream and scream and I did everything I could think of to help him. He was extremely colicky. But he would only cry at certain times, he would throw his arms up and make this sound that was something I never heard before, when he was cold. Now that I look back I can see he would get upset at many things that had to do with sensory issues.

No chunky or crunchy food!

He began to walk not crawl at 8 months old, he actually began to run not walk. He wouldn’t eat chunky food, he had no desire. He would not drink from a cup still does not fully but we have had major progress in this area. Ariel didn’t seem to have any of these eating  problems. He wouldn’t look at us. I would call his name over and over again. I knew he could hear us. He would look sometimes if there was a sound or if I said his name, while he was playing he would once ever so often smile a little. (He did have a hearing test later, no problems) Hardly any eye contact. Since Ariel didn’t show any of these signs I thought maybe it was because he was a boy. I had never been around baby boys before.

Then there was the meltdowns.

I noticed that he would have melt downs in the store and then it would last for a long time at home. As he got older the only thing I could do was let him be in his room. I became pregnant again and it took all my energy. My little Joshua didn’t give me the great pregnancy that the twins did. This little guy made me sick. I blew up like a balloon and got vertigo. David had an office job at the time that was very stressful for us both so that added to the dynamics.

Please stop screaming!

Daniel would just scream, sometimes he would scream all day non stop. I would try to give him everything I could, do whatever, find toys, put on shows anything but nothing would work. When David would come home I would be so frazzled that I would just break down. There was nothing I could do. Then there would be days where he was perfectly fine. It made no sense. No rhyme or reason. One day he would love something the next day he would hate it.

Anything that spins.

He only found happiness in anything that would spin. So I found everything I could, all things that spin. That made him happy. He was almost two and still not eating solid foods. We told his doctor and he didn’t think anything was wrong with Daniel because he seemed very social. He was kind of social; he would make eye contact sometimes, smile, and look at people sometimes. To on lookers or other people he just looked like a busy toddler who wouldn’t sit or behave. To us we just thought he was like us, he didn’t like being around a lot of people. We just thought we didn’t like people or something, well that wasn’t really the case we just had to come up with some reason why we never fit in with others. That seemed the easiest route.

 

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05/13/09

Not my job

I am not going to speak about Asperger’s in technical terms or go into the medical stuff. There are many blogs, websites, and resources that have done that and do a great job at it. I will list the ones that I go to and frequent. I also have a list of books and resources that I use regularly to help me and my son.

It’s about the journey.

I mentioned in the About section that I am using this blog as a way of expressing myself to help me on my Aspie journey. I have always written from the time I was able to write. I have had journals and journals. I wrote poems and stories as far back as I can remember.

If I wasn’t writing, I was dancing and singing – 45’s Baby!

I had my portable record player and would sit in my room for hours listening to all of my mom’s albums and all those “Read Along” stories. Now that I’ve found clarity about Aspie traits, I look back and see how I created my own world. And when someone interrupted it, I was VERY upset. I didn’t have a lot of friends actually I didn’t have any in my neighborhood. I had one at school. So my time was full of doing whatever I wanted.

I am social…I do have the ability to communicate and have since a child.

I usually speak whatever is on my mind and do not really comprehend that it could offend someone until later. But being that I am out there and pretty social (even though it puts in me in a tailspin of anxiety and panic attacks), people do not think there is anything different about me from them. So that has caused me quite a lot of pain and confusion.

Because I am social and don’t really think about it, I have been so confused by social cues. I can tell you exactly what I mean but the person listening hears what they think I mean. It’s confusing because I mean what I am saying – there is nothing hidden or implied in my words where I say one thing and mean another. It’s hard for many neurotypicals to get that, at least those that I have been around. I have had really great people in my life but they just don’t get me. I can be surrounded by a group of people like my family for instance and still feel isolated, awkward, and misunderstood.

And these people love me.

I had a crash course in understanding people who manipulate and control others. I really never knew they existed. In my mind, I honestly thought that if people were acting like that they didn’t understand what they were doing.

I have had some boot camp experiences in the last few years that actually brought me to a place of finding out that I am an Aspie. Even though the experiences were quite painful, it has brought about my emotional healing and mental restoration.

Most of all, understanding my son.

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