Mind Retrofit

Archive for the ‘Uncategorized’ Category

As I am sitting here, I am thinking about the weather cooling, the leaves changing, the darkness coming sooner and the soft light that is above our front door. The light is too bright to look at directly but the light beams bouncing off the walls to bring in just enough light, hovering over me as I sit in my shadowy hallway that has been converted into my office, brings me comfort and peace.

There is something about this time of year that just makes me smile.

I am not one for the cold, the smallest change in temperature can make me miserable. I am a very summer person. The cold makes the very core of my body hurt and when wind hits me it feels like sharp pieces of glass stabbing my flesh. But there are certain times when I am bundled up just enough to enjoy the cool air and the breeze hitting my face is nice.

I enjoy the fall season because it leads into so many great things.

October has always been a happy time for me but the strange thing is, it is a sad time also. I am not sure what it is, but my whole life I have gotten sad at the beginning of October through to December. I start to notice a change in January and then my sadness seems to lift. I have no reason that I am aware of to feel this way. Here is the strange thing, I feel completely at peace during that stretch also. My mood is usually a consistent calm. I am genuinely happy and at peace, but with a foreboding of sadness.

I don’t know what it is, it just happens.

During this time I see a lot of shadows. I like looking at the shadows. I enjoy the way the sky looks different. I feel a surreal calm when I look at the moon during this season. The sky at night has a different feel and everything seems to have colors day and night that are just full and rich. I feel like the earth is comforting me. I feel a closeness to God as I step outside as though I see Him looking deep into my eyes and saying “Hi there”.

I tend to look up in the sky a lot and say “Hi, thanks for this beauty”.

The shadows don’t scare me they make me feel comforted. I am at peace. My mind is calm. Looking forward to celebrating the twins birthday, having a day just full of family togetherness on Thanksgiving, reflecting on this past year being thankful, preparing for Christmas and just basking in the joy of the several months out of the year that I am not feeling constant chaos in my mind.

So as I look at the shadows that surround me,  I am also comforted in knowing I am no longer alone in the shadows.

Daniel had not been eating much and I was a bit concerned we didn’t have any gluten-free item that he was willing to eat. I was feeling a bit lazy with dinner so I made salmon patties and organic whole wheat mac and cheese. (I say organic whole wheat mac and cheese because it takes away a little of the guilt I have for not making a nutritious well balanced meal for the night.) Daniel wanted the noodles he kept asking and asking so I gave in. I thought just a little bit, I gave him a 1/4 cup, maybe he will be ok.

David comforted me and said well this will help us see if it truly is the gluten.

I prayed and prayed that he would be ok. He wasn’t, for two days he could hardly eat. He screamed and hit. He would come in and out from a daze. He would lay on the floor holding his belly. I have read from other people about the children acting like Jekyll and Hyde when eating gluten and casein. I thought well maybe that is the case but I really had no hard evidence in our case because I hadn’t tested it. He has been doing so well with the gluten-free that I didn’t want to chance it. Plus I feel horrible that I have caused my son such pain. We just had the most amazing week and he was doing so well then the noodles. I got my hard evidence.

I am utterly convinced, if there was any ounce of doubt running through my mind it is completely gone.

So I went out and got a variety of gluten-free items.I looked and looked at the stores that carry it around here, which is only two and highly expensive, but we do not care. We are willing to change our budget and our lifestyle to ensure Daniel doesn’t have to go through that again. I have limited our gluten intake as well and I am planning on trying a meal planning system to help me out. We have seen a difference especially in our heads not getting so cloudy and getting so tired after a meal. I really need that initial organization to help me get a script in my head and to open my eyes to all of the gluten-free possibilities. I know there are a lot of free resources out there and I do use them but I just need a little extra boost.

I need someone to make the grocery list and recipes for me, at least for now.

Here is the link if you want to check it out. She does offer gluten and casein free as well along with several others.

http://www.heartofcooking.com/

Listening

I don’t understand! I don’t know what you are saying to me. Why are you so upset? I am only speaking the truth. Doesn’t everyone want to know the truth? Seriously? You don’t want me to tell you the truth? Well then I am going to have to stop talking. If I can’t say the truth, I can’t say anything. I have to say I may explode though, or leave one of the two. I don’t know how to live like that.

One sided conversation? You think this is a one sided conversation? What do you mean? It’s one sided because you are doing all of the talking and I am listening? Is that what you mean? You just told me not to tell you the truth, right? So I am just listening. OH, MY GOD! I don’t understand what you are talking about.

Hearing

Right now your voice sounds like a screeching owl and it is causing my brain to feel like it’s going to expand like a wet sponge and ooze out of my head. Can you please talk softer? Now what did I do? I just told you what it feels like for me when you talk in that voice. Oh, is that telling the truth when I shouldn’t? Why are you yelling at me?

Seeing

Do you have to wear that red shirt it is causing my eyes to strain and feel like they are going to melt? What color of red is that anyway? Oh, that made you angry? What I just said? Well I just think if we are going to have a discussion like this it would be nice if you wore another shirt that is more appealing. That way I can look at you and not feel like I am having blurred vision. Right? I could just close my eyes but it wouldn’t much help since I can still see your red shirt in my mind.

Smelling

Thank you for changing your shirt. Ok, so what you were saying is “the problem is me”? You said “I don’t communicate well or show emotion”? Is that right? Let’s see…”I have anger issues and I am too isolated”. Do you smell that? Um….”I need to be more social, I don’t have any friends”. I smell something! It is a very strong scent. Ok, ok you don’t understand me. “I am obsessed”. Ok, that’s it! That smell is driving me crazy! It smells like flowers or fruit or something. (Sniff, sniff) It’s your shirt! Oh, my take that off. Are you using a new detergent? Is that cologne or something? Oh, get it off; you have to wear something else. That smell is burning my nostrils! It’s just awful. Hey, where are you going? I thought we were having a discussion. We’re done? Oh, good, I am hungry. Ok, call me later. I am glad we are finished. I could hardly go on, I am so hungry.

Taste
This is the best strawberries and yogurt ever! The seeds in the strawberries crunch in every bite. Oh, I don’t like it when the little seeds get into the groove of my teeth and I can’t get it out. I can’t do anything until I get that out. Ok, squish I love the squish in every bite. The strawberries are cold and squishy. I like saying the word “squishy”. I can feel the red color in my mouth. Funny, it’s ok to eat red I just can’t look at it. At least not that shade of red. That was very strange shade of red. This yogurt is so white; I love the fresh, soothing coolness. The white and red go so well together they are perfect. This is making my mouth so happy. The bitter and the sweet mixed together cause my tongue to leap for joy. Ah, now that is much better. Full belly, favorite chair, writing my thoughts. Nice, quiet, peaceful. I wonder when they will call. I think it went well.

From the beginning of Daniel’s therapy I was very frustrated and discouraged. All of the items that I was told he needed were outrageous in price and virtually impossible to get unless you went through online specialty stores. I would tell David “Daniel needs this” ” We have to get that”. The more I went through the catalogs and all over the websites the more I got frustrated and felt like a failure not helping my son. I started going to sensory diet websites and looking in my local stores for similar items.

That was the start of a great new adventure.

For things like a sand box, which we cannot afford, we found a storage box with a lid and bought play sand. We purchased storage boxes and filled one with rice and one with beans. I started thinking of ways to help Daniel with his motor skills and we found items like shapes that you can thread for a couple dollars. For his language we have collected a ton of flash cards that have been at Target for a $1.00 or Wal-Mart running about $2-3 dollars. We found a box set of computer learning games at Sam’s a few years ago and Daniel loves playing the Clifford phonics and Disney drawing. This has helped him with his coloring on actual paper and trying to draw pictures. Our biggest purchase has been a trampoline since our couch is getting destroyed and the beds don’t work from all of his jumping on them.

He mainly draws circles.

I am homeschooling the kids and using all of my everyday homeschooling items to do Daniel’s therapy. There are times when I feel like none of this is working or that I am not doing enough to help him learn the skills he needs. But then yesterday after weeks of not talking very much and then only whispering, he begins spelling words for me. He starts playing with Ariel and Joshua and interacting with them.

Some great things have happened this last week.

We got the movie WALL-E and David had a feeling Daniel would really connect with the movie so he got a WALL-E book as well. Daniel did, he has just recently started watching movies with us. In the past he would come in and out of the room. Maybe look at the show for a few minutes and then run off. In the past few months he has started watching shows like Toy Story and Nemo. However he has never grabbed the book and had me read it to him. He has been doing that this whole week. He loves the story. He has only brought me a Clifford book and his Fan book that I made him never a book that is connected to the movie he is watching.

I am sometimes afraid that he is going to loose what he has learned.

When he stops talking or won’t do any of the activities I plan for the week I think he may have lost the information he had. I am always wrong, after he gets over that hump I realize he has gained more skills and knowledge. He just doesn’t communicate it by talking. He doesn’t do all of the activities all the time but he CAN do them. He does them when HE feels up to it. So I am learning do not give up.

I have the visuals all around the house.

The themes I am doing for the month I keep on the wall in our living room. I have their crafts, pictures, and paintings all on our kitchen wall. I have the calendar for the month in plain view. I have made our home into a learning center all over. Their rooms are clear and uncluttered. But I have all of this visual for all of us so we do not forget what we are learning and so we can talk about it. That doesn’t work for some people but for us it is what works. It was hard to get used to at first because I like my walls white and uncluttered. Very simple in decoration and all hanging things symmetric throughout the house. So I try to keep it as clean as possible. The children learning has trumped my issues. Sometimes I clear it all out when I am feeling overwhelmed I am sure Daniel does too but then I give us several days and it is all good again.

My AS makes it very difficult to keep organized and focused.

So I do everything I can to help me and the kids stay excited and focused on what we are learning. You have to do what works for your family. David wants to be very much involved in their learning so doing this helps him to know what we are learning and including him to be an active participant. Instead of me filling him in on what we did for the day he gets to see and asks questions or come up with other ideas to do with the kids that they can do with “Dad”.

Everyone gets excited and talks about what is on the wall during dinner or after dinner sharing the words they spelled for the day. I have noticed by doing this Daniel is starting to want to participate as well. When he sees and hears us talking about the crafts or something he will go over to them and look at them or point to his own, then Ariel’s and Joshua’s. So any effort like this helps him feel connected to us and us to him.

It is SO worth it.

I plan on including some pictures of items I use in a later post it is not exhaustive but they have been great helps. I take my cues from Daniel when he is in the mood to learn that is when I keep going until I can tell he is over it. When he doesn’t feel like it I make it a day of sensory fun. Jumping, sand, beans, Play Dough, whatever I can get him to do. He loves the computer which has helped him in a lot of ways with communication. Some of the links I use are:

http://www.zacbrowser.com/

http://pbskids.org/

http://www.kidzui.com/

Daniel is a remarkable child. He is so loving and kind it really throws me for a loop when he has a meltdown. Especially when he has made huge progress then all of the sudden BAM! The weather plays a big role in his sensory issues, so does the moon cycle, and pollen. All of these things mess me up too so I do not understand why I become so surprised when he is having a hard time. For some reason I just can’t get it in my head. So I try to help him as best as I can.

He is whispering.

We have had some severe rain weather the last two weeks and Daniel stopped talking. He really wouldn’t talk for days so I didn’t know what he wanted and he started having meltdowns. The last few days I have noticed that he is whispering a lot more words than he had been using before. I think he is practicing and building his confidence. Actually I am quite exhausted from trying to figure out what he wants all day long plus trying to get him to eat and Ariel and Joshua not being themselves as well.

So I begin to give up.

But just when I get to the point of thinking nothing is going to change. Daniel surprises me. He is spelling words on his Clifford game, he was matching pictures and playing memory. He made pictures of a snowman with glue and a cloud picture with glue. He laced a square with shoe string and he traced an S with paint in the last two days. Last week he wouldn’t even sit for five minutes to draw a picture.

So what do I say?

I say I love how all of my children challenge me not to give up, EVER! I love how Daniel surprises me all the time.  Sometimes I feel very tired and weak and say why can’t we just be normal. Then I get over myself and become very grateful that Daniel has brought such healing to me. I am so thankful that our family is not normal and the challenges we face cause me to beat my beliefs against the rock until I can call them own. Ariel and Joshua challenge me as well . They have AS traits also but theirs are different and definitely not as extreme.

We are blessed to be different.

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

“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”.

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.

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. 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 peoples 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!” 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 he was a kid it shouldn’t be as bad. We were wrong. It had to have been worse. We are suppose 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.

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 CO we couldn’t find a church home or friends to connect with so for almost five years I was with the kids and David. 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.