Monthly Archives: December 2010


Recently I discovered that my blog has been removed from a blog that I have been following since day one of my blog. I finally mustered up enough nerve one day to comment and the person commented on my post and then added me to their blog roll. They had been on for about a year or so before I started writing and I really respected them and their articles so it meant a lot that they had me on their blog roll. I did notice over the course of several months that when I posted a comment on their blog, they seemed to ignore me. I thought maybe it was my imagination because I am prone to think things like that when it is not the case. It really could mean nothing but immediately when I saw that my blog was removed those events flooded my mind.

I was devastated.

It had to have been in the last few months but I just noticed about two days ago and ever since I have been an emotional basket case. All kinds of thoughts running through my head. Questions racing about what I could have done wrong, what did I say, did I offend them? What was it to have caused me to be removed??? I thought about emailing them and then thought better of it. I mean really, how silly is it for a person to be so upset about another person, who they really do not know, removing them from their blog roll? Rationally, I can see many reasons for this happening and it having nothing to do with me. However, my brain is not allowing me to stay in the rational state. I feel betrayed, hurt and confused.

That is why I am writing this.

I am not writing this to try to make sure no one takes me off of their blog roll, everyone has a right to do whatever with their blog. That situation is actually not the real issue here, the real issue is my fear of rejection, fear that people do not like me, fear that I have done something wrong, fear that it’s not ok to share what I am feeling. I need to write about this, I have to if I want to overcome it. I read a quote recently by Eleanor Roosevelt  “I believe that anyone can conquer fear by doing the things he fears to do, provided he keeps doing them until he gets a record of successful experience behind him.” I am facing a fear right now, this whole blog is about me facing my fears. All through out my life I have been unable to share what I am feeling openly.

When I decided to write this blog, I was full of fear that people would misunderstand me.

I was afraid that when people read my words that they would tell me how wrong I was or ostracize me, like so many others in this world. After writing for over a year, I was feeling pretty safe being able to write my rants, ideas and all of the things about our family. I felt safe in the community of people that I had encountered. The day that I saw my blog removed, I no longer felt safe. I felt rejected by my own. There is no place that is safe. No place, there is no place that wants me. I understand that these emotions are quite extreme and that my anxiety and fears are accentuated due to many factors going on right now in my life. I get this, my rational side understands this but the one thing in my brain that repeats it over and over and all of the past voices of rejection hammering the rational voice down is just too much for me to handle.

I feel by writing this down I will be able to face my fear of talking about what I am feeling.

I have to remind myself that it is ok to have these feelings, I am not wrong in my emotions. I am allowed to say this, I am allowed to talk about what hurts me. I need to so that my rational voice can bring me back to my normalcy. As I write this though, I feel people who read this may misinterpret me. They may think that it is all about being removed, that I am being childish, irrational and responding in a way that is too extreme. Some of those may be true but I believe I know why it was such a trigger for me. I will list them out with a brief explanation.

1) It is the holidays, this time of year is always extremely stressful for me. It is a hard time because of the uncertainty of everything, there is constant change from October to January and it makes me quite emotional. In one of my other posts, I had stated that I usually have about three major meltdowns by now. This is my first for the holiday season, we are almost at the end of it, so I think I have progressed a bit this year.

2) I have been much more social this year. It has been about two or three years since I have been actively going out during the holidays to places, parties, this was the first year we have ever left the house on Thanksgiving and we have been going out with the whole family more. In the past it was mainly Ariel who would get to go places but this year we have been taking the boys on more adventures because it has become possible to do so. All of this is new to me and is an additional stress factor that I usually do not have. It is good, actually it is awesome, but it is still a lot.

3) Daniel has been having a rough couple of days after a party we went to. I usually am not able to think clearly or sleep well when he is having a hard time like this. I see that this could be another major contributor to me having such an extreme response to the situation.

4) My grandma is coming in a few days, Christmas is coming up this weekend, I am both excited and anxious. Anxious in a good way. The problem is that with all of these above factors, trying to relax and find peace has been very difficult so my brain is in a constant state of what feels like bees buzzing around my head and my eyes see the world as a fuzzy blur.

5) Our car isn’t working so we are having to rely on my Mother to help us right now and it always stresses me out to get help from others because I feel like I am messing up their whole life and I don’t want to be a burden. My Mother knows me too well, without me saying a word she continues to reassure me that we are not being a burden.

6) I miss all of my family that is out-of-state. I haven’t seen my Dad, Step mom, my other sisters, nieces, nephew or my Aunt in a very long time. It has been about three years since I have seen my Dad. Sometimes it sounds like he gets a bad rap on my blog but he is a really great Dad in many ways. I will write about that at a later time.

7) I feel so isolated. It is strange that with all of the social stuff that I have been doing, I feel isolated. The truth is that the more social I am the more I see how different I am. I go blank when people talk to me, unless they get me talking about something that I am interested in, I cannot talk. I blurt things out without realizing it, many people think that it is funny but still no one else does it, except David. Ha ha ha I usually find myself sitting by myself watching others talking, laughing, having fun and I feel like I am an invisible observer that no one sees. Of course this isn’t true but the only comfort I find in most social gatherings is when I am with children or animals. So I am always thankful if there are lots of children or animals around.

8)In reference to #7, this makes me feel rejected. Even though no one has rejected me, this is what I feel. I believe this is what caused me to have such an extremely emotional response to the whole being removed thing. It is a horrible feeling to feel rejected by others but then to feel rejected by a person in my “safe” community was just too much. We are supposed to understand one another, I thought we connected at some point, I thought that maybe I had something to contribute to this community and now it feels as if my words mean nothing. My life is not validated by a fellow Aspie.

As I write this I know that it sounds over the top.

I do, I know that this is all emotional and had I noticed after the holidays and things had settled down I am sure I would have felt some of this but not to the extreme. It’s really not a big deal and I am kind of thankful that it happened because it has made me face some things that I haven’t wanted to face. I am scared about sharing my writings because I fear that others will think that it is not good enough, I fear that if I share my feelings that people will misunderstand, then attack and cause me to go curl up in my cave again. I fear that my writings, my life, my feelings, my contribution to this world is not valuable.

So today I face those fears.

I am writing these out and I am sick to my stomach, tears welling up but I am writing. I am going to post this and I am going to be ok. I am not going to allow circumstances beyond my understanding influence me to be scared. Just because I am overwhelmed and emotional doesn’t mean I am not allowed to talk about it. I really dislike feeling this way because I feel weak. I need to feel weak sometimes so I can pull up strength and move forward. I hope this is a post leading to my freedom from some of these fears.

Well there you have it, I am exposed with all of my irrational feelings and the reasons behind them.

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The Cheese Experiment

I have been going around and around in my thinking about Daniel having such a hard time with cheese. I wrote about what happened when I gave him cheese in this post No Cheese! . It just doesn’t make sense to me that he can eat some things like yogurt and macaroni and cheese but cannot eat cheese. I had to go looking into it to see if I was just making things up and of course there will be experiments on Daniel with different foods because there is no other way for us to know what is going on. I don’t want to but we have no choice. He is repeatedly asking for cheese and doesn’t understand why he can’t have it. I am torn because I want to give it to him since he has never eaten it for me before, it is a new texture and feel in his mouth, that is a good thing. I have searched the soy and rice cheeses and they too have milk protein (casein) in them.

I found an almond cheese but it was crazy $5.00 for a small block!

What if he doesn’t like it? It may seem like it would be worth it to try but seriously I cannot be alright with spending $5 on a block of fake cheese that he may or may not like and I know darn well the rest of us will not so it will go to waste. I did find a recipe to make your own gluten-free, casein-free cheese. I may try it, it is made with hemp milk and tahini. I was thinking that I was crazy about this but just this week twice in a row, I used more milk in our dinner than I usually do. I got so extremely ill that I wasn’t sure what to do. The only difference was that I had more milk in my diet than usual. We didn’t change brands, I didn’t have anything else different in my diet except for the amount of milk. I find this odd because I can eat cheese. I cannot eat a lot of cheese because I get ill with that as well.

Maybe he just has a low tolerance and I gave him too much cheese the other day.

I do know that in order to find out what it really is we have to try to give it to him again. We will have to do low doses and take it from there. The week that he had the problem with the cheese, he ate cottage cheese and block cheese. It could have been just too large of quantities for his body to digest. I do know he cannot drink milk, that always makes him sick. I find this whole thing just odd. He isn’t allergic to it, he was tested for that but he obviously has an intolerance.

After the holidays and after things settle down, we will start our cheese experiment.

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Working On The Dysgraphia

Daniel has a combination of symptoms he is considered to have several types of dysgraphia such as motor and spatial. We have been using Handwriting Without Tears for about two years now. Along with doing fine motor exercises, there are many resources out there to help and to choose from, we do have to change them often because this is a source of frustration for Daniel. I have to try to be creative and make it interesting to him. He really has seen no purpose in writing and this has been a challenge. This year he has taken to learning to type because he has connected that it is beneficial for him in his computer use. I haven’t been able to find the “thing” to help him connect that writing is beneficial as well. Maybe it’s not for him but it helps to work on his posture, holding instruments, and learning to focus on the task.

However, Daniel has shown a new interest in the last few months.

I use play time as a means of practicing writing and we do practice words and letters on practice sheets. He seems to go in spurts with those, one day he wants nothing to do with them, the next day he will do 10 in a row. It is all a matter of how he is feeling, if he shows signs of getting frustrated we just stop. It is no good to anyone if he is upset because he can’t do it that day and forcing him will only make things worse. On those days we focus on keyboarding skills.

Being that he is virtually uninterested in writing or drawing most of the time, the other night was quite a surprise.

He was having a hard time calming down after church Sunday and we were all ready for bed, except Daniel. He was running around and terrorizing the cat for some reason. Earlier that afternoon he asked me to get the Pictionary game out for us to play, his playing is spinning the dice. I got it out and very soon he was done playing, it sat out because if I put it away that could have been an issue. SO back to the story, Ariel asked if she could play Pictionary with me and I sat down to play, this intrigued Daniel so he calmed down and sat next to us. I decided that I would read something from the card and Ariel could draw it. She thought this was a great idea, I asked Daniel to join us, he replied “I can’t, I don’t know how.” I told him sure he knows how let’s try.

I knew that he could draw a face and I asked him to draw that first.

He drew a sad face and I said “see you can to draw”, this gave him a little confidence to give it a try. I read the first thing which I can’t remember what it was but he tried to draw it. He asked me to help and I gently held his hand as he drew. We continued for over 30 minutes, when he was unsure how to draw something he would watch Ariel as she drew her picture and then he would try. He made a lot of pictures and it was a pretty big deal for him to sit and draw these pictures only from the word with the exception of the ones that he watched Ariel draw. It was really great to watch him have fun at something he normally has such a hard time with and most times gets discouraged. He has been practicing writing words as well, we are keeping it on the white board for now and practicing the letters on paper.

I tried to locate writings and practice sheets for the past year.

I have very few except for the past about 5 months, which is the time that he as tried to give the whole writing thing a chance. Before that I have very limited items, as we were working a lot on him creating projects. We used a lot of different textures, played with clay, shaving cream, rice/beans and worked on more craft items that would get him to use his hands period. It has turned out to be beneficial since the past months he has been more open to trying to write and draw. Here is where he was at Sept. 2009 “I want to draw” and in Jan. I wrote about my own dygraphia issues but didn’t call it that because I haven’t been officially diagnosed, in my post Arts & Crafts and the Such.

Here are a few of his sheets from August up to December and the evening I wrote about.

Here are some links about Dysgraphia and resources.

dyslexia A2Z

Homeschool diner

Handwriting Problem Solutions

Not Otherwise Specified

Autism Spectrum Disorders Fact Sheet

Resource Room Free Spirited Structured Multisensory Learning National Center for Learning Disabilities

LD Online

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Autism and Treatment Options

I was excited to see this post today at Help! S-O-S for Parents . I was happy to see a list of treatment options and autism sites for people to be able to look at and read for themselves. In my last post Let Me Explain I shared some of the therapies that I use with Daniel. I have looked into many of the treatments listed and blogs listed on the Help! S-O-S for Parents post but it is so much easier to have them all together for people to search through.

I have written about the various ones that I use in other posts mixed in with home school, I believe. The resources like books, curriculum’s, Dvd’s, video’s, websites etc.. that I have found are all listed under my “Resource” tab. I tend to lump therapies into certain categories in my mind and then forget to give the detailed information in written form because I think everyone knows that such in such goes into my category of say occupational therapy. Then I realize that is not the case when I see a list like the one provided. Since I just wrote about it I thought it would be beneficial to share the list posted as well.

I really like the purpose of this blog, here is the announcement about it. Carnival of S-O-S

The Autism and Treatment Options is the first in the series.

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Let Me Explain

Most people would probably wonder why I do therapy at home. I too would ask and would question the motives and the ability of any parent who said that they were doing “home therapy” with their child on the autism spectrum. Not that I need to justify myself but I do feel that I am accountable to our society and to my husband and children, that is another reason that I am blogging. Our story is a bit different from others but it also shares a resemblance to those parents years ago and even in some areas now who are unable to get the resources needed to help their child.

We decided that we would not be solely reliant on others to help our son.

We were very thankful to find the pediatrician that we did when we moved here, our other pediatrician didn’t feel that there were any major concerns with Daniel that he wouldn’t grow out of. I did not have that same reassurance, when we moved here our primary goal was to find a doctor to help Daniel or to at least guide us in the right direction. The pediatrician we went to listened to us, I had documented all of Daniel’s issues, shared how we had researched autism and had my check list. She was very receptive, we were afraid that once again our concerns would not be listened to, but she had a nephew with Asperger’s and was very receptive and recognized right away some key issues. She sent us on our way with lists of different doctors and her office set up the appointments for us.

The first was to have Daniel’s hearing, sight and mouth/throat checked to see  if there were any issues concerning them about him being non-verbal.

Of course he was fine in all areas so we went to the next step. I had to fill out what felt like a billion documents and I was very glad that I had already kept journals of Daniel’s issues because it made it a lot easier. We were sent to Occupational and Speech therapy right away and he got evaluated for his sensory issues and eating problems/being non-verbal. They set us up for 5 days a week with both of them. Then we hit our limit with insurance and had to go to twice a week, we were going for an hour each session than half hours for each session. Now Daniel was progressing so the fact that the time got less and less was not a huge issue but both the therapists made it clear that in order for this to work it had to be done at home as well.

I sat in on every session and asked questions and asked them to guide me in what to get for resources.

Whatever they told me to do at home, I did it and we saw progress. When our insurance ran out completely and we now owed over $5000 for something like 6 to 9 months of therapy, I can’t remember now and since I cannot find our medical papers still, I have to guess, it felt like a long time (What we owed actually isn’t as bad as some.) we had to evaluate what to do. The therapists had confidence in me to work with him at home until we could find another solution. What David and I did was looked long and hard at the whole situation. Where we live the only therapy options are about 30-45 minutes away, that is if we are lucky, some of them cost $30 a session which is a good price but still something that we cannot afford at this time. Daniel can qualify for free services and coverage but we have the added issues, as do all people with everyday home life, along with gas and driving time. During the months that I took Daniel it took about three to four hours out of our day. That took away from David’s work, from our home school schedule, the other kids could not get on a schedule, Daniel and I both having social anxiety, even though it was good it was all very stressful.

There is only one highway to our house, there is a train that goes through, it is a 20 minute train.

Now after that image, imagine what it is like for a child on the autism spectrum who has been in and out of the car for about two hours, trying to sit in a waiting room full of other children on the spectrum, going through all sorts of challenges with his sensory and social things for about an hour or longer and also being stuck in a car for 20 minutes, but not understanding why. Those days were not fun and needless to say nothing got accomplished when we got home. Between the drive, the gas money spent, the fact that David lost jobs because of having to watch the kids, we couldn’t afford childcare, the school district is frightening here, (let’s just say they have had a couple of teachers convicted of child abuse) and the stress that it all put on us, we decided to not pursue other interventions at that time and focus on me doing it at home. Side Note: I later discovered another route to the areas but it is still the same distance and for some reason I cannot understand how to use the other highway. I know that sounds silly but I have direction problems.

It seemed natural, I was homeschooling and researching therapies anyway.

I had learned a lot from the therapists and was given a ton of resources to start with from them. We did go to the school here and Daniel was accepted into the special needs program for free but their main focus was on tying shoes, using the potty and coloring with a crayon. They did not show us his classroom or introduce us to his teachers, the questions we asked were answered evasively and frankly David and I had a bad feeling from the second we walked in, this was before we knew of the abuse. Daniel was completely non-verbal at the time, we trusted our gut and didn’t pursue that route. We have tried to do other options and it just hasn’t worked out but that doesn’t mean that I should not be doing what I can to help him while we wait.

This whole thing was not easy, I had several break downs during this time.

I didn’t think I could help Daniel but I was already. I felt at any minute God was going to miraculously heal Daniel and I wouldn’t have to worry about it anymore. Finally after reading Tony Attwood’s book, The Complete Guide to Asperger’s Syndrome, things started to click. I began reading a lot more books about different therapies to help Daniel and I went down the path of researching homeopathic therapies but I couldn’t get past Jenny McCarthy being the loudest spokes person for them and I just felt for us that it was not a reliable source. I would ask David about these things, I would get desperate and say let’s just try it and his background in chemistry made him very skeptical, he would show me what certain chemicals were made of and lead me to resources from the science field that would help me to come to a conclusion. He would help me discern the hype around certain products and guide me to more reliable documents about these things. We do give multivitamins, fish oil, are on a gluten-free diet and try to restrain from eating processed foods as much as possible. We do believe in a healthy diet and since Daniel still eats a limited diet we feel that is it necessary since he doesn’t get enough nutrients from his food source.

There were only certain times that David flat-out said something like that is a bunch of bull and we are not using our kid as a test dummy for it.

I knew that it had to be pretty bad if he said that because he doesn’t normally. I stuck with the more reliable sources that have studies to back them up. I have mixed in Floor Time, my own take on ABA, Developmental, Occupational, Speech, Social Skills, music, art (in various forms) therapy and basically I do what comes natural to me and to Daniel. I looked into the Sonrise program and used some of their methods that they shared for free and I have used YouTube to watch conferences, get ideas about therapies and try to stay on top of the new things coming out. I read about them and then decide if it is worth pursuing. The way I see it school is pretty much all of this anyway so why does it have to be separated?

I try to include all of it into a natural flowing curriculum for all of the kids.

This is a full-time job and I thoroughly enjoy it. At this time in our lives it is working, Daniel has continued to progress in each area, he works very hard and tries to try new things. He is the one who has put in most of the work, I am just a guide and I cannot wait until he gets older and sees all that he has accomplished. I feel the same for Ariel and Joshua but this post is focused on Daniel mainly so I will stick to it. I am not an expert by any means but in the world that we live in and the added bonus of David’s access to medical books, sites and other resources I am able to work with Daniel at home. I never think I have the answers and I always know that I can do better or gain knowledge from an unexpected resource. If Daniel were not doing so well we would definitely do what we had to do to help him. I know that I naturally do well with young kids, that is a gift and as he gets older I may not be able to help him like I have been able to.

The good thing is that David has a natural gift with the 12 to young adulters so hopefully he will be able to step in at that time.

BUT we are not limited to our own gifting and we know that we can always benefit from other people’s perspectives and ideas. I try to keep an open mind as long as it doesn’t seem physically or mentally harmful and I am always willing to give something new a try. I am not an expert on these therapies but I am an expert on my son, most times I understand what he is doing and thinking, I may not always know the why until later but I relate to him. I feel many of the same sensory things, some I do not, I feel his social anxiety, I feel his misunderstanding of this world and I have found it to be very helpful. I also know my limitations and I do not kid myself about being able to help in those areas, I cannot and I do not torture the both of us by pretending to be able to. I look to others or creative resources like DVD’s and YouTube to help him with some of those. I also want to interject here that Ariel and Joshua are a large part of Daniel’s progress, they have taught him so many things that only little ones can. I hope I explained thoroughly about our story.

I share this not to be compared with others, I share this because this is what we have to do, I hope it encourages others to do what they have to do for their family and to keep up the strength to do it.

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Is It Just Me Or…

Today we went to church and I was in class with the kids, my kids included.

I was feeling pretty good despite the fact that my Mom had to come get the kids and I and pack us into her car and take us to church. It turned out alright and we made it on time and everything was going very smooth. I was kind of looking forward to being with the other teacher assigned to the class today because she has a son who is 9 years old and has Asperger’s as well. We have talked on occasion and I felt pretty comfortable with her, there are times when I feel a little off but nothing bad or anything.

She commented on how well Daniel was doing.

She said how awesome his progress was and how it had been about three months since she had been in class with him, then she looked at me and asked “Who are you going to?” I guess by the look on my face she could tell what I was going to say and she said “You are doing it?”. I answered and felt like I was being condemned a bit and jumped right in with how I am meshing various methods and we still do not have insurance and if Daniel wasn’t progressing this wouldn’t be the case. I felt like I was doing something wrong because I was doing therapy at home I do not know if the tone in her voice or the look she gave made me feel that way or if it is just my own fear that I may be failing Daniel.

Thankfully we had a room full of 4 and 5 year olds that needed attending to.

We sat on the floor with the kids and I was actually quite happy to see that another teacher would be in the room with us who I feel very comfortable with because at this point I was feeling off. As we sat on the floor she shared some of the things about her son and what his obsessions happened to be at the moment, as we were talking Daniel went for the remote control and TV and I shared how that is one of Daniel’s obsessions. ‘Electronics, batteries, the stove, the recorder that he is holding in his hand” were some that I shared with her. As she was sharing about her son’s “obsession” she made it clear that it was quite an annoyance and that she was ready for it to be over. I changed the subject to Daniel working so hard at trying to use the potty but he isn’t quite there yet. I then said how there are other issues that really take precedence so we will continue to work on that but it is mainly a sensory issue that we have to work through.

She said “Well don’t get discouraged if he regresses because he will regress, my son did.”

At this point she pulls out her cell phone and asks Daniel if he would like to see it. Of, course Daniel wants to see it! Long story short, she gives it to him, he becomes obsessive to the point of being completely distracted and not listening. I finally tell him that he has to give it back and I hand it to her, he proceeds to go into meltdown mode and I tell him that he is going to have to go with Grammy if he doesn’t stop because he cannot do this in class. She then steps in and asks Daniel to help her clean up, then she will let him see the phone. This works. When she puts the phone away I suddenly see a remote control in his hand. I was distracted with other children so I do not know if she gave it to him or if he got it himself.

I tried to get the remote from him but to no avail.

I decided it was a battle that I did not want to take on at that moment. He held on to the remote throughout the rest of the class. After we did our singing time, which was great, he participated in every song and did the hand motions, we went back to class to sit down. As we sat to watch a short video about the story, Daniel sat with the other teacher but then got up and started running around the room. I got eye contact with him and told him to come sit down, he did. Then it was craft time, Daniel did not want to sit but I told him that “It is craft time, everyone is sitting and doing a craft and that includes Daniel, you.” I sat him down, sat the remote control down on the table next to him and gave him his craft to do.

He completed it and did a very good job.

By this time class was over, kids were leaving and we were cleaning up. I knew there was going to be a problem with the remote so I walked him over to the TV and explained to him that it belonged to the church and we had to leave it. Finally without any problems he set it down and we were on our way home. This day turned out to be a very good day. Although I feel that it could have turned out very bad.

I am completely confused by the woman’s behavior.

So at this point I am asking for feedback if you feel like it please comment and tell me your thoughts. When the teacher pulled out the cellphone and showed it to Daniel I felt rather angry. Then I was very confused as to why she would do that after we just spoke about “obsessions”. It made no sense to me why she would purposely pull out something knowing that it had the potential to cause problems. She understands that dilemma she has talked about it in the past and even today about her own son. I felt confused by her response toward me when I said that I was helping Daniel and I felt confused as to why she would tell me that Daniel was going to regress so I better be prepared for it. I came home and shared the whole experience with David and he got angry too and said he felt that she did it on purpose. I have to say I felt the same thing but then quickly thought that I had to be wrong. David isn’t the best judge of social situations at times either. I thought possibly she was trying to be nice to Daniel by letting him see something that he would like but then again she should have known what would happen.????

She has offered to help me in the past.

She let me borrow several books, (that I read and returned) told me about an autism symposium which I went to and I gained a lot of info (but she was not the only one who told me about it) and she has said “If you need any help do not hesitate to ask.”. I am thankful for all of this but to be honest, the open statement is too much for me. I don’t know what to ask for and if I have any questions I look it up myself, I get books from the library, I buy books, I watch videos, I read blogs I look for any resource possible and I have an urgency to find the answers on my own. I also have this added issue of, if I am going to ask a question it will be from a professional who can answer my question based on their professional opinion being around various other children on the spectrum not just their own child. I have nothing against asking questions of other parents but I really handle it on my own. There has not been a time that I haven’t been able to find an answer using the resources that I use or being able to find new resources.

All of that said, I mean no offense, if I have a question while she is in my sight of access, I will ask.

I don’t know maybe I am reading too much into all of this, I do not understand the social situation. I am confused and I cannot stop going over and over it in my mind and I just want to stop thinking about it. So if there is anybody out there who feels they have any insight or at least can tell me just to get over it, please do! It will be much appreciated. :-)

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He’s A Comedian!

Recently Daniel has not wanted to sleep in his bed, he wants to fall asleep on the couch with me. Joshua wants to fall asleep in our bed and Ariel sleeps in her bed. Both Daniel and Joshua want us to put them in their beds after they fall asleep and then when they wake up at the crack of dawn they come stumbling into our bed along with the cat. We have a queen size bed, needless to say it does not fit all of us comfortably. We do not usually allow this to happen, we have them lay in their own beds and let them try to fall asleep on their own, but with the holiday season they haven’t been able to do this very well.

The other night, Daniel was having a very hard time falling asleep.

As a matter of fact it was like he had a cup or two of coffee somehow before 8pm rolled around. We put him in bed and he was using his bed as a trampoline, he was flickering his light on and off rapidly and he was playing a very loud Easter bunny that lights up and sings “Jesus Loves Me”. It is kind of creepy, its mouth opens and closes and it’s cheeks light up red but hey Daniel likes it so, ok. If we allowed all of this to continue he would never go to bed and we caved. We know that he was using these methods as torture to force us to let him come lay on the couch with us. Finally we let him come out and he laid down.

But he refused to lay down and go to sleep because there was a light on the DVR that usually is not on.

He asked us over and over “Why is the yellow light on?”. We explained it to him, he had to go investigate and then would come run and plop onto the couch. He could tell we were getting frustrated and then changed his line of questioning to this:

Daniel: Can I ask you a question?

Me: Yes.

Daniel: Where is the question mark go?

Me: The question mark goes at the end of a question.

Daniel: Why?

Me: It tells us that the sentence is a question, someone is asking something.

Daniel (laughing at this point): I KNOW!

He was laughing so hard that he could barely get it out.I admit the first three times he did it, it was pretty funny. After about the tenth I was kind of over it. But I have to say, it still made me laugh. I couldn’t help but laugh at his silliness and him laughing at himself asking the question over and over again. He fell asleep in about 15 min. and left us with this great story.

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I Took The Red Pill

I have read these several blog posts recently.

Who ARE You, Really? (Redux)

Do These Shoes Go With This Purse?

Coat Shopping

They pretty much hit a button with me and saddened my heart. Not because of what they wrote but because of the fact that it hurts to read these things for myself, living and reliving these feelings. It hurts to know that others feel that same pain of being misunderstood, needing to wear a mask or a different coat for each situation. It is also comforting to know that I am not alone. The holidays are painful for me, one of the reasons is because of what these blog posts touch on. Every holiday for me was an exciting time, there were many fun things about every year, there was also the other things that were very hard for me as a child, well into my adulthood. Holidays was the one time when I had to wear  multiple masks, but not wear them well at all. It’s not only the holidays that I have had to live like this but the holidays, for me, was many forced social situations that tossed me back forth.

My parents being divorced caused a whole slew of situations that I did not know how to handle.

Each holiday I had to split it between my parents. I am thankful that I got to be with both of them and those times are good. It was the schedule of people that I dreaded, feared and was ridden with anxiety about. First, I would have time with my Mom’s side of the family, then there was my stepfather’s family, then I would go off with my Dad and step mom and her family as well. I had to behave one way with my Mom and my Grandparents, I had to behave another way at my stepfather’s family, another way with my Dad and step mom alone, another way with my Dad’s family and then another way with my step mom’s  family, which by the way I never felt welcomed and dreaded going. It wasn’t that some of them didn’t try to make me feel welcomed, some of them did, but I just had this feeling that I cannot explain or articulate that I was a burden or something. Their entire family is very confusing to me and a lot of what they do and say I find incredibly hurtful, they would not understand this and it has nothing to with them really, I just don’t understand their humor. It scares me.

This was entirely too much for a young kid to remember or feel responsible for.

I did though, I felt like it was up to me to make sure I acted the way I was supposed to and when I couldn’t I felt like a failure. I couldn’t remember the rules. I didn’t understand the social situations. I tried very hard and over the years I eventually became someone who I did not know. I use holidays as a prime example but this whole changeling thing that I became a pro at was damaging and was a contributor to my misuse of alcohol, constant self-hatred, depression and isolation. I desperately wanted people to understand me, to know me but I didn’t even know myself. Slipping in and out of the costume for each social event became too difficult until I felt I found the answer.

My answer for some time was religion.

When I realized that religion was only another mask in which I wore, I became disillusioned with my faith and people of my faith. I haven’t lost my faith, I am just finding it for myself. If that makes any sense.  My eyes were opened to the same patterns and it was damaging. I am working through that now. The mask has been ripped off and the one thing that made me face myself was the discovery of  Daniel being labeled as having Asperger’s. I wrote some of my feelings in this post Autism a Scary Word. When I wrote that I was discovering a mask that I had been wearing and I ripped it off. I am in a constant state of self discovery. I have tried very hard to just be natural. It is difficult because when I do, I remember the repercussions from the past. I remember the hurt and confusion, the anger and inability to control my temper at the injustice.

The difference now is that I am beginning to step outside of myself when I fall into a mask, more often.

I feel it happening and I stop myself. I either get out of the situation because it will be too confusing or hurtful or I proceed with pulling off the mask. I no longer have coping mechanisms to help me keep the masks. I cannot pretend to be normal and function properly. The only way I was able to before was through means of reliance on substances, using God in an addictive way or escaping through false realities. I just can’t go back. I took the red pill and can’t go back. Now I am on a journey to live according to others rules while not going against my own. It is a difficult task. I am discovering that I don’t have to live by their rules. If people get insulted, it is their responsibility to tell me so. If they feel like I have hurt them, they should respect me enough to ask me what I meant. If they are my loved ones, then they should know where I am coming from. I make it pretty clear.

There are still times when I just automatically slip into character.

I will not realize it until after the fact, I was getting upset at myself for this but what I realized is that I am just protecting myself. It takes a lot to undo so many years and layers of what and who I thought I was. I had mountains of words spoken to me, defining me but I never defined myself. I took everyone else’s words for who I was. I assumed they knew better than I did, after all I was too confused to know any different. Those words have had to be combated, beaten down, in some cases destroyed. I have become a new mold of clay searching for each real piece of who I am. Rebuilding and dismantling all the way to finding freedom. I may sound cliché’ but this is the truth of how I feel.

The more I read the more I understand myself and others.

I am so thankful that through this journey of rebuilding I am able to read about other people who have had similar situations, feelings, and are finding themselves as well. There has been this lie that we are not supposed to be ourselves but the conflicting slogans that hit us daily in the world tell us “Be yourself” but when you are yourself you get attacked, ridiculed, ostracized and bullied into not being the real you. I think the more we all talk, the more we all write, the more we all expose these feelings the stronger we get and the more confident we become to truly just ripping off the coats, the masks, the layers and running around comfortable in whatever we want to wear or what we are actually supposed to wear.

Or maybe wearing nothing at all…….:-)

(Picture/”red pill” inspired by Laura with this post My New Motto and The Matrix of course.)

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Day On The Town Part II

Our Day On The Town Part I can be read here, it gives the precursor to the rest of the day. Something needs to be shared here about the dog parade time incident. My Mom had believed that the parade was to start at 10am, however, after beginning to freak out a bit and be quite confused we finally discovered that it actually was to begin at 11am. I note this information because a huge thing happened, in the past if this were to happen to my Mom, the day was over. She would have piled us all up in the car, had a meltdown, dropped us off and then spent the day at home alone beating herself up because she couldn’t believe she got the time wrong.

She started to do this in the car.

I was having my own issues, which I will talk about in a few, but I saw that I needed to stop this so I shared with her how it turned out better because, had we come when the dogs were already walking the strip, we do not know how Daniel would have responded. Since we arrived early we were able to do our normal script that we do when we go downtown, the kids were able to walk the strip, Daniel could count all of the ceiling fans in each store and restaurant, we could look at the boats and the pirate statues and then head back.It worked out better because we would not have been able to do that while the parade was going and if Daniel was afraid of the all the dogs and the sounds were getting to him there would have been double trouble, not fulfilling the script. She felt comforted after that and we went on our way ready to tackle the rest of the day.

I really don’t know what were thinking.

I know that both of us were determined to have our day since we only do it once a year and Ariel looks forward to it so much. I had to try to calm down from my own sensory overload, from the weather, the wind, (Which I absolutely hate cold wind, it tears through my bones and hurts me very much.) there were smells, the constant staying on guard with all of the kids, especially Daniel, the not knowing what was going on about the parade and then the last bit with Daniel running almost head on into a car pretty much caused me to be done. But I had to snap out of it and help my Mom recover. I knew that Daniel was going to have a rough time when we left him and Joshua at home so that added anxiety weighed on me and I told David how to help Daniel because he was having auditory processing issues and he had just gotten scared with the dogs. I proceeded to give a detail description to David of everything that Daniel may do because of this “so please do not get upset with him and he is not misbehaving”, were the words that escaped my lips.

David being the great guy he is just nodded his head and said “Ok, it will be fine.”

So us girls headed out and the question that my Mom and I both hate, despise, detest, abhor “Where should we eat?”.  We left it up to Ariel. We drove about 20 minutes to civilization, during which time my Mother decided to take a route that she never takes but it is the route that I always take. I was confused because she hates this route and when she made a wrong turn I thought that she knew what she was doing. Well she did not know what she was doing and then got frustrated because she thought I knew what she was doing, I stayed calm and told her to just turn around. We did and we got to the correct turn but in the mean time I was explaining to her that I had no idea why she would go that way when she doesn’t know it and she was explaining to me that she took it because she didn’t want to hear me ask why she was taking such a long way to get there. Neither of us had shared what the other was thinking, we just assumed the other knew until the turn. I explained to her that I had already had it in my head that she would take her normal route because that is the way she goes.

We were trying to help each other have more peace for the day in our own way and figured the other knew what was going on.

Finally we made it to our destination, Ariel decided on burgers and we got out to go to the restaurant. We walked in and were assaulted with acoustics from hell! The place was so incredibly loud that my brain went black and fuzzy. I couldn’t think, I started getting nauseous and felt as if I was going to faint. My Mom saw my face and said “Should we go?” I looked at Ariel and she had her hands covering her ears saying “It’s too loud!” We high tailed it out of there and then got frustrated again because we had to find a new food source. I decided on something quick and easy, but my Mom didn’t know where it was and I told her it was right down by the light, two minutes away but she was flustered, I can’t even remember what was going on at this point but it was so bad that I said “Should we just go home? I am almost in tears and I don’t know.” My Mom was not yelling or being mean which would have been what happened in the past and I wasn’t being rude or hateful to her which would have been what happened in the past.

My question actually made my Mom laugh.

Which in turn made me laugh and we decided to give it a try to keep going, we had to for Ariel. We had to make this into a good day for her! It HAD to happen. We went in and for some strange reason people were standing in one line, I saw two other cashiers with no one, in the middle (we were at Chick-fil-a) I then said out loud without realizing it until my Mom laughed, “This is silly, come on, no one is over there.” as I excused (plowed nicely) through the line with Ariel. We ordered in two seconds, the heavens parted, it’s ray of light shown down on a booth (which my Mom loves booths) in a fully packed restaurant and we were guided by angelic beings to our safe place of solitude. After we ate we felt much better, all of us had low blood sugar and were cranky because of that, then we laughed at ourselves for how silly we can be. At this moment we said that this is the  part of the Asperger’s traits that gets to us sometimes, we just want to be able to go out and not be so overloaded that it can ruin our day. It’s the sensory stuff that really sucks sometimes. We like our Asperger’s traits. (I hope this came out right, I am not sure how to word it properly.)

After all of that we headed out.

As we were trying to leave though, there was a trash loiterer, ripping small pieces of paper off of his ice cream cone hovering over the trash so no one could use it. It went on for quite a while, I just went across the place to the other one that had no one. As I walked over a person cut in front of me to get to the trash. I was taken back wondering if this was at all odd or was it just me. I think it was odd, I was finally able to throw the trash away and we could leave. THEN we went to Micheal’s craft store, very crowded chaotic but a store my Mom loves so we went and I was so out of it I was saying all kinds of ridiculous things. One time Ariel asked me about this 3D chalk stuff, I couldn’t explain how it worked, my brain was fried, my Mom jumped in and tried and then I said without thinking and rather loudly “It doesn’t matter it never works anyway.” My Mom lost it and started laughing really hard, I didn’t know what she was laughing at, at first, then I started laughing at my comment.

After Micheal’s we went to Wal-Mart, we are quite insane, I admit.

By the time we got to Wal-Mart we had already prepared ourselves to be completely overloaded but we had to go because we told Ariel that we would. While in that place, the TV’s hanging from the ceiling bombarding us with ads made me dizzy, the lights made me sick, the sounds and smells were causing me some serious pain and while in the produce section I say to my Mom “Oh, I need potatoes, I wonder if they have any here?” I was standing in the middle of them! That is how disoriented I was, this too made my Mom laugh and helped me snap back a bit. She had her fair share of sayings as well but I can’t remember them now. We were quite the comic relief and even though all of this stuff was going on Ariel was pretty happy. She too was hit with all of this stuff and needed to sit in the cart the whole time, while in the car on the way she stared off and on and when we got home she collapsed on the couch, needing to just stim on Scooby-Doo. I will add here that Joshua was having a hard time too but David helped him to focus on Lego’s when he got home and that seemed to helped him quite a bit. When he gets overloaded he shuts down and that is what he was doing right before we came home from the parade.

We started at 9:30am and got home at 3:30pm, it was a very long day.

There were a lot of rough patches and when I got home I heard about Daniel’s as well. Then Daniel and I had our share for the evening because he was upset that I was gone so long. But all in all the day turned out great. Great in the sense, that my Mom and I understood each other, we were able to communicate what we felt and if we couldn’t we understood that we couldn’t and that it had nothing to do with each other. The last part of the day turned out to be fun, all three of us were exhausted but happy. Despite all of the rudeness of other shoppers that I didn’t even go into. Daniel communicated what he was feeling and later when I came home he told me why he was upset with me. The very good news is that neither my Mom, Ariel or myself had any meltdowns. That is HUGE! The other very good news is that Daniel’s didn’t last long at home, he had his moments, I told him he couldn’t hit or push or scream and that he needed to tell me how to help him, he told me and we fixed it. Each year is getting a bit better, we are able to do a bit more and actually have fun. The stress of the holidays is a lot but we are learning how to deal with them much better. Our work in progress.

I am very surprised at me, normally I have had at least three major meltdowns by this time into the holiday stretch and I haven’t yet…..knock on wood. :-)

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Day On The Town Part I

This past weekend my Mother and I had a plan. Every year since we moved here, at Christmas time, we have a girls day out. My Mom, Ariel and myself all go out and do something. We pick the first weekend in December, the past two there has been a tour of Christmas decorated houses in the downtown area, it sounds all great and wonderful but actually it is pretty lame and costs too much money. This year especially, they narrowed it to four houses for the same cost. We thought that it would be interesting seeing historical houses and such but no one gave any history, we got lost every year and then frustrated and then overloaded. We decided not to do it this year for numerous reasons. However, it was fun to have a girls day out and just do something together. This year we decided to go out to eat and then try to shop a bit. What were we thinking??

Before the girls day out, we had another plan also.

There was going to be a dog parade downtown, my Mom thought that it started at 10am. We decided to take the boys to that, then we would drop them off to have a guys day while we hit the town. Mom came at 9:30am sharp, we piled all three car seats and kids in her small Ion Saturn backseat, (our car is about to collapse, too dangerous to drive) and off we went to the dog parade. Now Daniel was trying very hard to be ok with the driving in Grammy’s car thing, but he kept saying that it was a tiny car. We are not sure if he was upset about it or if he liked it. We we got downtown there was no trace of any dog activity. It was 10:15am, we decided to walk the strip, which we have to do anyway because that is the script and if we didn’t there would have been a whole mess of meltdowns. As we were walking we became concerned with the lack of people and dogs! What was going on?

By this time my Mom and I were getting a bit stressed.

We said that there was going to be a dog parade, Ariel HAD to see the dogs. The boys had to see them to check it off in their mind but if Ariel did not get to see the dogs it would have been a nightmare. Her love for animals is a bit obsessive, I mean a special interest. We walked up and down the whole strip and made it back to the car, everyone needed a break from the cold wind and the walking. I gave them a snack and some water while Mom read the paper and discovered that there was a typo and the parade actually was to start at 11am. We looked in the mirror and saw a line of dogs and owners ready to start the parade. So we had to hurry so not to miss it because we were at the beginning of the parade, all of us piled out and Daniel was not happy about that at  all. He didn’t want to get out of the car and he didn’t want to leave his snack. I let him bring the snack with him and we went. He fought me the whole time crossing the street and when we got to the dogs he managed to get loose from me and made a bee line for oncoming traffic!

I caught him with superhero like speed and ask him ‘Don’t you want to see the dogs?”.

His reply “NO! I want to go to the car.” I left Mom with Ariel and Joshua and Daniel and I got to the car. I told him that what he did was dangerous and that he cannot do that because there were cars coming. I proceeded to ask him why he didn’t want to stay and see the dogs. He said “I was scared and it is loud.” WOW! I was thankful for that information. I shared with him how next time he can just try to tell me that and I will listen and not make him go. He asked a series of “why” questions and I think by the time the others came back we understood each other. That was a pretty big moment, scary moment and good also. Thank God my reflexes kick in to grab him, I have much practice though grabbing him from running in the street. We have worked on that a lot and he has done very well at following the rules about not running in the street but I believe he was just too over-stimulated and there was too much change so he was unable to think about the rules.

After the parade, we dropped the boys off and went out for the “girls” day.

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