Monthly Archives: May 2011

Two Year Review

Today marks two years that I have been writing this blog. I had no idea I would still be going. I wasn’t sure what the whole blog thing was about or how I would fit in this internet world. I am glad I started blogging, it has changed my life in many ways. I think mostly it has helped me finally find words to emotions and past experiences. I have also met some pretty amazing people and I think that you are all so great and I am blessed to be in a great community.

When I look through my past posts though, I see how much I cycle.

Things that I thought I have gotten over, I am not. I believe it is because I didn’t have the words or comprehension of what I was feeling before and now the connections are finally being made. Poems I have written years ago are now coming out in full length posts and things are getting settled in my mind a bit. It is a slow, long and hard process but it is happening. I am finding that when I read my past posts I can feel the emotions and the reflection of the person I was then. I have changed but I am saying the same things in some cases. 

The difference now is that the words mean something different to me.

As I wrote about Daniel’s progress I see how my attitude has changed into a more accepting mind-set of myself and everyone here. I have become more aware of all of our issues. To be completely honest, I no longer feel defective. I no longer feel apologetic for me or my kids. I no longer care what other people’s perceptions are, most days. Even as a I read some of my past posts, I can feel my apprehension about my feelings, I just had a different attitude. I was discovering what ASD meant to us as a family and how it affected each of us. I still am but there has been a shift that I can’t quite explain.

I guess it is a more of an understanding which has brought about more acceptance.

I see in my writing about Daniel that I talk about his talking, social skills and eating issues all progressing but then I haven’t talked about the bouts of going back to old ways. He has not regressed in several years now but he does go back to old patterns and rituals when he is overloaded, has anxiety or is not feeling well. It scares me every time because I have this fear of him loosing all of his progress. Loosing his ability to talk or have fun with us. I do not really think this will happen but I feel it. These times are much shorter than they used to be. He is able to calm much better most days but there are still some times that he just can’t and those can go on for days.

It is contingent upon, sleep, food, sensory issues, weather, clothes, allergies and social understandings.

Any of those things, if the slightest bit off can throw him in a tale spin but after two years, he can point-blank tell me what happened. Not all the time but now most of the time. He knows when someone treats him the wrong way and when he treats them the wrong way. He understands that he can hurt people and that it is wrong. He understands that it is wrong for others to hurt him. We have been working on the “Right way” and “Wrong way” scenarios for months and he is able to comprehend many of them. Two years ago, I wasn’t sure that was really going to happen. He didn’t notice or understand when he hurt someone or someone hurt him.

I am very excited with all of our progress here.

We have all learned a lot about communicating and how we fit together as a family. It is not always fun, just like for any family. I am more aware of everyone else’s issues now, I see how I focused so much on Daniel and myself that I missed things with Ariel, Joshua and David. This next year will probably be a transition into focusing on everyone and how to work on helping us as a whole. I think about the progress I have written about Daniel, it can sound like I am repeating progress but actually each progression is more in-depth and advanced. Such as yesterday he looked at a spinning bee wind thing on Curious George and said “I wish I could have that.” It sprung into a conversation with me about what he liked about it and about weather.

He was not doing that a year ago, even though his language had increased.

I am looking forward to another year of all of us progressing. I am really hoping to find peace in some areas of my life that seem to keep popping up such as church and family. I can’t wait to see how we all progress and I am looking forward to Daniel and Ariel starting first grade and Joshua technically starting Kindergarten, even though I have had him do most of the work they do. We have other things that we are starting socially that look promising, I am steering clear of any church social activities with the kids, there are just too many theological differences with churches around here and there is no program with the church we have been going to. I am looking forward to getting the kids involved with art, exercise and possibly some cooking adventures.

I am just excited for the future and writing about it.

Here are some posts from the past two years, you can see the change in my writing voice, I think. It is interesting to read the change for me, maybe it is not noticeable for others, but for me it is. :-) Side note: I have noticed my timelines may be off, I get sucked into the here and now and tend to think everything is a about a year or so in the time frames. The timelines can be accurate in many cases but I have a sneaky suspicion that they are off a bit in time. I have virtually no concept of time no matter how hard I try. We have lived here for almost 5 years and it still feels like we just moved here.

May 2009

Confused

Hit My Wall

May 2010

The Specifics

Onward and Upward!


 

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Real or Made Up?

It is virtually impossible to explain what goes on in my mind. I have kept my thoughts secret, far from the reaches of those around me and even closest to me. David is the only person who knows the “real” me, well as much as I know about myself. The issues I have had have been around my entire life and the biggest problem is that no one else seemed to notice. Sure they would say things about me being weird or silly or how I tried to get attention and had to be in the lime light or that I was a mischievous little child or rude but they never stopped to ask why. And why would they? What I have noticed about families and people in general is that you get labeled early on and once you receive your label you are done. The label given to you now determines how family members treat you and where you fit in the peripheral pecking order.

The problem with me was/is that I never fit in the titles I was given.

I found it quite confusing and hurtful. I still do but you cannot change the image that people have of you. For me, I spent a life time trying to live up to the labels given to me (good or bad) and cried out in many desperate pleas to get the labels broken off of me. My life has been lonely, scary, and full of fears. It also has been quite rewarding and I have achieved many things that I can be proud of. People do not understand that, I can embrace my dark times with my rays of light. Even now as I am writing this I feel sadness and tears welling up but I am quite happy and relieved to finally have answers to my questions that I have for so long ached for. Through this time of researching Asperger’s and the Autism Spectrum Disorders, the more answers I have and as I continue to find books, articles, videos, doctors and others like myself I am ridden with emotions.

These emotions are both joy and heartache.

I have joy because my world finally makes sense to me and heartache because no one ever noticed or took the time to help me. I am also filled with heartache because I know that it really doesn’t matter to a lot of people either, even those who share the same DNA as myself. I have been labeled in this world and I am done. I am an adult now and should move on. What people do not understand is that my mind will not allow me. I do not wallow in the past, I need my past to help me understand who I am. I need to know why certain things were bad or good, if I don’t I have all of these chambers opened in my mind. Left open with no closure and I will fall into same patterns that lead to the same downfalls, if I don’t recognize them. I need to know why certain things hurt me, why I didn’t understand a joke, why someone treated me the way they did.

Many of my questions have been satisfied with simple answers.

I also have now learned that there are just some questions with no answer at all. Though I find it difficult to grasp that, I finally get it. Through out my life I have questioned my sanity and feared that I truly was insane. There have been times when the only option I felt was suicide. My motives for this was not intended to be selfish, I believed that if I was gone everyone, especially my family would be better off. Then there were moments when I felt that no one even knew of my existence. I still feel this at times, like I don’t exist. I am just a vapor that drifts by the lives of others never known, never seen. I am not depressed, I am disconnected. I don’t want to be, I just don’t know how to exist. Then there are times when I feel so socially normal that I can’t contain my joy. I am not in manic states, I am just feeling like I belong. My existence becomes validated, for a moment. At those moments I wonder if I had made up all of the emotions I am feeling and think surly I should be able to stop this.

Then I am once again feeling like my life is a drifting moment.

My thoughts get consumed with anxiety and fears that I know are not real but I can’t stop them. I begin to feel that I am not wanted and never was wanted by family or friends. I get engulfed with thoughts that I have done something wrong and then panic, driving me to a fight or flight mode. And I shut down, cut myself off from the world and escape into my safe haven filled with the acceptance of my husband and children. When I am in this state I feel that is all I need. I convince myself that we are perfectly fine like this, just us. I then look at my kids and know that I can’t. We need people but it takes all of my strength to step out into this world and be strong for them at times. I feel their pain when I see them not fit in socially. I hurt deeply when I see people look at them awkwardly. I am sensitive because I know the signs. I know what it feels like. They don’t know though, so I have to keep up my strength to not let on that anything is happening.

I don’t want to influence them with my issues.

I am reminded that my life growing up was completely different. They are different from me and they will handle situations THEIR way. I get that, it is just sometimes hard to let it happen. But it has to. I survived, no I didn’t just survive, I actually thrived in many areas despite all the obstacles that were before me. Many people have and they have achieved great things. I am actually quite happy that my children have a whole different world to live in. They will have resources to help them through their teen age years into adulthood that I didn’t have and they will succeed. They will do much better than me and I love watching their journey. (Some days not so much :-D) I am also very happy to know that whether real or made up, my emotions and feelings are mine and I can feel them and express them. I am hoping that our children will feel validated in their emotions. I hope they never have to wonder if what they are feeling is real or made up, alone.

I would pray that they feel comfortable enough to talk to us about it, so that isolation is far from them.


 

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Made In China & Scooby Dooby-Doooo

About two months ago Ariel had this moment, she felt she had figured out the answer to some grand mystery that no one knew about. David and I were in the kitchen and she and Joshua were in the living room playing, all of a sudden Ariel exclaims “This is made in China!” she then looks directly into Joshua’s face and says “This toy says that it is made in China!” Here is the rest of the conversation:

Joshua: China?

Ariel: MOM, DAD! My toy says made in China, I can’t believe it.

Me: Ariel that is good reading, you are right it is made in China. You have A LOT of toys that are made in China.

Ariel: What? I can’t believe it. (She runs to the map on the wall and points to China.)

David: Very good Ariel, that is China. Yes, they make a lot of toys. We have many things that are made in China.

Ariel: (Running through the house, picking up all of the toys) This is made in China, this is made in China. What is not made in China?

Needless to say we ended up having a lesson on economics and our government, to try to help her understand the whole thing. But now, she checks items to see where they are made. We will be in a store and she will read “made in” to herself than shout “MOM! This is made in China! I can’t believe it!” I was reminded of this yesterday, when she yelled, “Hey, mom! This is made in China too!”

Another funny thing she said was last night.

While watching a commercial, she said “Mom! I know what they are doing now, the commercial people do this because they want to make money.” She then explained to me the reason for them to do commercials about cars, perfume and phones is to make money. It was pretty funny how she explained it to me because she thought I didn’t understand this bit of information.

I got skooled! :-)

A bit of this morning….Currently, Joshua and Daniel are running back and forth making eery ghostly sounds from Scooby-Doo. They just stopped and this was said:

Daniel: Game over. Would you like to play again? Two players. I am Shaggy because he is scared. I am playing scared.

Joshua: Would you like to play again? No! You are walking in the campfire. Stop! You are on fire!

Daniel: Oh, no. I am on fire! I am out of the fire, I am not on fire!

(Running)

Joshua: Watch out for the pumpkin witch!

Daniel: Oh, no! The pumpkin witch.

Joshua: We have to get out of here before she disappears me!

Daniel: Oh, no! Let’s get out of here!

Joshua: Ok, we have to stop, Scooby always eats Shaggy’s sandwiches. Now Daniel, you make a sandwich so Scooby can eat it, me, so we can get out of here.

Daniel: Ok, we have to stop, Scooby always eats Shaggy’s sandwiches. Now Daniel, you make a sandwich so Scooby can eat it, me, so we can get out of here.

Joshua: So if I want to run better I can eat a Scooby snack.

Alright, they are still going, Daniel is repeating basically everything Joshua is saying because Joshua is adding to the story. They seem to be combining about three or four different Scooby-Doo episodes that they have watched and replaying them.  Oh, now they are talking about Pac-Man. New game I guess, oh, they just found a Scooby snack.  I can’t keep up. My kids make me laugh. It’s really great how Daniel is playing like that, he is adding some things to the story as well! I love my kids! They make me laugh so much and give me such joy.


 

 

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Needed A Change

I did it again. I was feeling antsy for a while wanting to change my theme I finally found one I think I like. It is not all that I want but I really like the colors and how it looks much cleaner. Again, my colors are not that different but I like them so I will stick with them. I am hoping that I am settled on this because I have been fixated off and on for about three weeks with searching for themes and yesterday I couldn’t let it go. I was up late searching for themes and finally went to bed. I woke this morning unable to let it go, finally I found this one.

Maybe I can put it to rest for a while now…. :-)


 

 

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Because….

Because today I do not feel like laughing. I am reminded of how different I feel from others because the things that make me laugh do not always make others laugh. The things that make me cry do not seem to have the same effect on others as well. It is times like these that I want to shut myself up from all of the world and just stay in my safe controlled space. I feel alone even though I know others know what I am feeling and may feel the same way.

It is still isolating and painful sometimes.

Feeling disconnected from the world and people. But I know it will not last and the best way to help myself is to write something, so I wrote a poem about laughing. I am not wrong for laughing when I feel like it and I am not wrong for crying when I feel like it. Whatever my reasons, they are mine and that is ok. I am allowed to have these feelings. So I will remember also, that sometimes I laugh and cry at the same time and that is ok too. I refuse to allow myself to shut down and cut myself off, the way I so desperately want to.

 

Laughing

From one extreme to the next,
I find myself quite perplexed.
~
Crying, writhing for the hearts broken,
when suddenly laughter is burgeon.
~
What a quandary of non-sense I feel,
when out of darkness a smile appears.
~
Rolling, thunderous pounding from my gut,
uncontrollable–No! I can’t stop!
~
Senseless to some,
strange for another,
for me freedom,
it puts any fear far and asunder.
~
Quaking can no longer stand,
when the laughter is not band.
~
Open mouths free to cry,
bring in the laughter, give it a try.
~
Silly peoples, serious with pout,
causing us quirky’s to feel left out!
~
No need to worry,
no need to sigh,
out of our strange deeds,
should smiles abide.
~
Memories flooding, crashing my dreams,
laughter cascading among the scenes.
~
Once we few, left in the cold,
laughing alone, yet still rather bold.
~
I see a face, I question why,
funny eyebrows, they make me cry.


 


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