Monthly Archives: March 2011

03/30/11

Nothing Much To Say

I do not have a lot to say but I felt like putting something up so here are some recent photos of random things.

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03/29/11

What’s In A Birthday?

Being that my birthday is this month and I have seen so many other people sharing their birthdays for this month as well, I’ve been thinking about what birthdays mean to me and how they have had an impact on my life. I love birthdays! I enjoy the thought of celebrating a person on their day. The very special day of them being born and coming into this world to share their gifts with the rest of us. Unfortunately, some people are not the greatest to be celebrated but I do get great joy in celebrating wonderful people who contribute good things to this world and my life. Birthdays for me growing up were an event, not like huge party events but a celebration for the day. My mom made it a day of great celebration of me. My day! She did the same thing for my sisters and I took on her same enthusiasm when it came to birthdays.

I thought everyone loved birthdays.

The way my mom reacted toward birthdays was very unlike her, so I jumped on the celebrating with her. She recently shared with me that she did not have a script for birthdays so she made it up. I only once had a sleep over as a little child, when I was in 3rd grade. It was horrible. I was so embarrassed by my mother’s behavior, the neighborhood we lived in and the generic food we had in our cupboards. I was mostly embarrassed when my mother yelled at me in front of my friends about us “eating all the food in the house” and “being so loud the neighborhood could hear”. It was a birthday party, we were supposed to have food to feed 6 little 9-year-olds. I remember the girls asking me why my mom was so mean and the one question “Doesn’t she let you eat?”. I lost some friends after that party, I was already teetering on keeping friends because of my quirkiness but that was the final straw for some. I did manage to keep a couple but by the next year I had to gain a whole new set of friends.

Still I was not deterred by the birthday celebrating.

I did manage to talk my mom into letting me have another sleep over when I turned 14 years old. That one went exactly the same the way, only this time my mom had taken the doors off of the hinges to my room, so there was no privacy. My mom yelled at us to be quiet most of the evening, we opted to go to the basement and I got yelled at for us eating all the chips that we had purchased for the party. Um…They were for the party. I now understand the reasons for my mom behaving the way she did, a lot of it had to do with the stress of new people in her house, her routine being messed up, the noise and what felt like constant chaos. I didn’t know that then, I just felt hurt and embarrassed. But when it was just family or if my mom had planned a party with her friends for me she was fine. She was actually very happy if it was a party that she could do herself with adults.

I was ok with that because I did much better with adults anyway.

It caused me too much stress to try to figure out who were my friends. Both times I had my own party, I had one friend that I hung out with all the time. They were actually the ones who convinced me that I was supposed to have a sleep over, that’s what girls do. I would have that friend tell me who to invite because they were friends with them, that’s how I got people to come to my party because of my one friend. Even though I had those experiences, mostly I only have happy memories of my birthdays and the birthdays for everyone in my family. My dad’s side of the family made a big deal out of birthdays too. It wasn’t presents because we never really got a lot but it was the fact that it was a day to celebrate each other on “our” day.

My birthday has many significant things wrapped around it.

Maybe everyone made such a big deal out of my birthday because I was unexpected and almost aborted. My parents got pregnant while they were 16 years old. My dad was a star football player, wrestler and track star. He was considered the most popular guy in school. My mom had just moved to that school, she was originally from a different state all together. She was a loner. One day, one of the girls was pressuring my mom about dating and my mom got annoyed, thinking that she was playing it safe she told the girl that she liked my dad. My dad was dating the head cheerleader, my mom didn’t think he knew who she was or would ever know who she was. To her surprise the girl told my dad and lo and behold they ended up dating and surprise! My mom ended up pregnant.

My mom was so sick, confused and scared that she didn’t even know how to process the whole situation.

She told my grandmother and got beat up with a phone book. My mom was looking up pregnancy crisis or abortion, she just wasn’t sure what to do. My grandmother point-blank told my mom that she was getting an abortion, and my mother shut down. Now that we look back at it, this is one way that her Asperger’s affects her. She just shuts down when she is completely overloaded or unable to process, we both do this in certain situations. This particular shut down, she could not talk, eat, think nothing. She actually lost weight in her first trimester with me. When my dad found out he refused to have me aborted. At first when my grandfather asked mom what she wanted to do, my mom had no idea. The the night before the actual appointment for me to be aborted, my grandfather asked my mom “Is this what you really want to do?” and my mom said “no”. He went into the kitchen and told my grandmother, there was an intense argument then my grandfather came in and said “You don’t have to go.” Then came the part where he said he was not going to raise her baby or support her husband so something had to be done.

My dad said that he would do anything to make sure I was born.

His mother, who had her first child at the age of 15 years old and was on her 4th marriage with six children, asked him if it was really what he wanted. All he knew was that I was supposed to be born and he was to do right by me and my mother. He agreed to my grandfathers terms to marry my mom. He joined the Army and went in as a medic, after boot camp and training he was scheduled to go to Vietnam. Unfortunately, his older brother was killed in a car accident several weeks before I was born. My dad was devastated by that, then a few weeks later he was scheduled to leave. However, also during this time the Paris Peace Accords was finally signed and supposed to go into action. The war was supposed to stop and the troops were supposed to come home. My dad however, was still scheduled to leave but he had great favor and was allowed to stay since he was a medic, for my birth.

He got to be in the room during my birth also, when they still were not letting the dad’s in the room.

I decided to make my entry into this world at 11:59 pm, one minute before my actual due date. The family joke is that I just HAD to prove the doctor wrong. My birth was another event, because during that time parents having different type blood was still an issue. I had my dad’s which was A positive and my mom had O negative. They swept me away and were all concerned about me, my mom had to have a blood transfusion and I had severe jaundice. I spent my first few days in an incubator, my mom says that is probably why I love the sun so much. Since my dad got to stay for my birth, he actually got spared from being sent to Vietnam. My dad was instead stationed to Germany and 6 weeks later my mom and I joined him. I was a young international traveler. :-)

For me, my birthday has so many things tied to it that at times I am not sure how to process it.

No one ever kept it from me that I was extremely close to being aborted. I had many years of questioning why parents had me. I seemed like such a burden to everyone and I just didn’t fit in so I questioned the purpose of my birth. I think about it at times and wonder why my dad felt such a burden to have me born. I kept the story light but my father fought hard for me to be born. He was tenacious and determined. After all that has taken place in my life, I really don’t know why. My dad was the one who baptized me when I became a Christian, he stood in front of the congregation and shared his story about me almost being aborted. He tearfully, almost sobbing shared what an amazing experience it was to share in my birth as a baby and to share in my re-birth. I had never seen my dad show emotion or even talk about the events of my birth like that.

I kind of tear up now as I write about it.

It is hard to image the never existence of me or the non-existence of this life I have with David and the kids. It’s hard to believe that in an instant or with the persistence of my grandma that I could not be here. I had issues with my grandparents for a while not understanding how they could love me if they never wanted me. I still have a hard time with that one but they ended up loving me and caring for me a lot. For me I love my birthday. I love getting older and I always have.

I love remembering my story.

It is the only thing I have that connects me and my parents together. I am the only child from both parents so I think my story helps me to remember a time that I have virtually no memory of, my parents being together with me. I was three and half when they divorced and my sisters are all half sisters. My dad and step mom have three girls together and my mom and her ex-husband had two girls together. I was 10 years old when my first sister was born. I always felt like I was outside looking in to both of their lives but when my sisters came I really felt like they had different lives and I fit no where. No one purposely made me feel that way, I just did.

I love that I am alive and get to share this enthusiasm with my kids.

Even in my hardest times, through some of my darkest days in life and feeling misunderstood by family, friends and people in general, I still was always able to celebrate my or other people’s birthday. Despite any negative I was going through, birthdays have been that one day that it was and is to celebrate life, in my mind. I do not feel the ache in my heart that I used to and I have a lot to celebrate these days. What’s in a birthday? The day we came alive, the day our uniqueness came into existence to share with this world. Our purpose to keep on growing and living and celebrating everything we have accomplished, along with all that is set before us to accomplish. Our birthday represents to me, a year past of things learned and looking to a new year to apply everything that we have learned. Also a new year of more things to learn and share with others. Life!

I say Happy Birthday to YOU whenever it is! :-)


 


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03/28/11

The Visit

I was amazed at how well the kids did while my sister was here. I had a feeling it was going to be a great time, I was more concerned with what they would do after they all left. I tried to prepare as much as possible. For me this was a way to test out my new freedom in being myself. I was worried that I would fall into old patterns, like saying things that I don’t want to say, get fixated on inconsistencies and not allowing the conversation go on until they are dealt with, shutting down completely or becoming someone that I am not and realizing it later.

None of that happened.

I felt myself start to do those things, recognized them and stopped. This is huge for me to be able to catch it before it happens. However, it does take quite a bit of energy to focus like that but I think with time and more practice it will come easier. Unfortunately, for my sister she got a lot of downloaded information on my special interests. I talked a lot about autism traits and the family. She asked questions though and seemed very interested, I am not sure if she was though. When family topics came up I tried really hard not say anything negative, if I said anything that may have sounded that way it was not my intention. It never is my intention but people misunderstand what I am saying or how I am saying it.  I was very happy when after she left and my mind started to go over every word we said, I told myself “I had good intentions and never meant anything negative, if anything was misunderstood, it is not my fault.” and ‘I cannot do anything about how others understand me.”.

I do not believe I said anything anyway but I had to reassure myself.

I made some huge progress, no anxiety after the visit and I genuinely had a great time and so did the kids. I knew that I had to for the kids to feel calm and happy as well. The first day they came my niece, who is 9 years old took to Ariel right away. My niece loves playing school and our house is pretty much nothing but a school house. She is a really great kid too. They played everyday. All of them, Daniel tried so hard to participate. When he was unable to do so any longer he would come in with the adults. Joshua would take breaks and do his Lego’s. Joshua tried so hard to get my niece to play Lego’s, she just wasn’t into them, he found that confusing. They all played games, David played games with them, they played outside, it was just great to watch.

I normally would be in the midst of the kids.

I did not this time because I felt like it was really important to hang out with my sister. As we were hanging out the kids were getting a little bored so I decided to take them to the park across the street, we went and it was gone! It was there the day before and now there sat a picnic table. I was upset. It threw me off entirely, I didn’t realize how loud I was but I was outside standing in the middle of our neighborhood saying “Where is the park?” “Where did the park go?” I was freaking out on the inside, well and kind of on the outside too. The park is the only one close to us that has swings. Daniel needs swings! Sometimes it is the only thing that will calm him down and it is a short distance from our house, now it is gone, our lives are derailed. Needless to say, I continued to bring up the missing swing set and drove everyone crazy, especially David.  :-)

We ended up going to a park about 15 – 20 minutes away.

It turned out great. During some conversations with my sister, I had shared my concern about our social issues. I get overly concerned with Ariel at times because I see so many familiar things in her and I do not want her to feel anything that I have felt. I know that is not realistic but it’s the truth, I don’t want any of my kids to feel the pain that I have felt. I think that is normal. Anyway, my sister shared with me later that she observed Ariel being social with other kids at the park and she took right away to my niece. I really started to pay attention. The next day we went to their hotel that they got for the day, it was a pretty ritzy hotel, once in a lifetime thing. We got to swim in the awesome pool and whirl pool. The kids and I actually stayed for about three hours. It was so great, Daniel always does well in water. I love water and if I don’t keep track I will forget that my kids are little and cannot stay outside all day, like myself.

Joshua was a bit scared but he has this thing in him to conquer it.

I got them rings because they still do not know how to swim extremely well, that is our goal for the summer, swimming lessons. They all three had their rings on and Ariel went for it, Daniel subtlety went around the entire perimeter, (all day) and Joshua wouldn’t leave the stairs, I told him he could do it and that he is so brave to give it a try. Once I told him he was brave, he repeated over and over as he stepped out “I am brave, I am brave.” and he conquered his fear. I watched all of my kids, Ariel made friends with older girls (4th graders!) with her cousin, Joshua wanted to hang with the ladies and the little girls all loved him, Daniel started up conversations with the adults he encountered in the pool and whirl pool. He asked them what the filters were, why the pool was blue, what they were doing, all kinds of questions.

I was shocked.

I was so happy at the independence that my children were revealing to me. They didn’t need me at all! Well, I was in eye shot but they were perfectly fine. They knew the boundaries I set for them and they kept to them, but they also ventured out and explored and socialized. There were several times when Daniel got into people’s personal space and it was a bit awkward. He swam up to one guy, got about two inches from his face and asked “What are you doing?” then he went up to another guy and started playing with his feet, then he went up to two young ladies and got a bit too close. Thankfully they were all polite and just thought he was cute. Whenever he did those things I would call him and tell him to come to me, he would turn around and smile a mischievous smile.

I conquered something that day too.

In the past I would be overly apologetic and feel the need to explain to everyone that he is on the autism spectrum and try to explain his behaviors, my purpose to gain acceptance for him and me. I did not do that this time. I felt the urge and I decided it was a fun day and I didn’t care what anyone thought or felt about us. It turned out to be a more positive experience by doing that. My stress levels were down and so were the kids. We just had fun. I was expecting meltdowns when it was time to leave, but it didn’t happen. There were no meltdowns that night either. I know that the pool helped a lot with that. We all do very well after being in a pool for hours. :-)

When they were preparing to leave it was hard.

I didn’t know how the kids would respond. I continued to tell them that they were leaving on such and such a day. The last day they were here, we all just hung out. The kids played but Daniel stayed with me and my sister. He really liked his aunt and was sad that she was leaving. I wasn’t sure if he truly understood but when I told him that they would be leaving in about two hours he grabbed his Kibbles Clubhouse DVD that is full of social scripts. I wasn’t entirely sure why he did that until the end, they have a good-bye song. He sat and stared at the TV when it came on. When they were leaving he continued to ask why they had to go, then he asked to go with them, I asked him how he was going to get his food and told me that he would do it himself. (Chuckle) They got in their car and he teared up and rubbed his eyes.

After we watched the car leave, he grabbed my hand and took me in the house.

I asked him if he was ok and he said yes, I explained to him that it was ok to be sad. He told me that he wasn’t sad and then asked if he could play on they computer. I let him, we all needed to stim, we were all exhausted. Ariel and Joshua dealt with it their own way. Joshua played by himself with Lego’s and Ariel went to her room and connected to the room where they had stayed. She drew pictures, she just needed some alone time. Later her and Joshua played together. There were several meltdowns but not bad, normal kid meltdowns with just tears.

The next day came the meltdowns.

BUT I was prepared. We had purchased this book, When My Worries Get Too Big! A Relaxation Book For Kids Who With Anxiety . I read it to them for school, we went through talking about our feelings and talked about all of the fun things we did. The book contains an emotional scale 1 thru 5, 5 being out of control. Daniel was not showing signs of the start of meltdowns, he went from zero to 10 within seconds the day after they left. The miracle of all of this was that he really connected to the book,  I grabbed it while he was rolling or flipping and screaming on the floor, I showed him the picture of the boy at a 5. I said “look Daniel this is where you are at, let’s get to a 1.” as I read through the book showing him the techniques the boy in the book used to get to a 1. It has been working, in this short amount of time Daniel has been helping himself, one time he even got the book himself to look at the pictures. WOW! I did not expect that.

My sister had many great things to say about the kids.

I was very happy about that but then I also have that gut wrenching feeling of thinking that she will go to the family and say all of the negative things about us and how we live. I have no control over that and I cannot focus on it but I do acknowledge that it is a possibility and that it doesn’t matter. I just don’t want to be taken by surprise by it like I have in the past. I do not think that it is intentional, I think it is the system that my family has been running for decades and no one realizes how hurtful it can be. I always do better with family one on one anyway, actually that is with people in general. She also made a comment about how our kids all sound like little adults, she said even Daniel when he talks is like a grown up. I hadn’t really thought about it. I was pleased with their ability to adjust and be social. I realized just how much the sensory issues hinder them from being social. I finally get it, they are doing just fine. I don’t know how long I will feel this way, but for the moment I understand that everything is fine.

We are all fine as long as it’s in the right environment, we have been prepared and we have the tools to help with anxiety and stress.


 

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03/25/11

Aimee Mullins: The opportunity of adversity

I read this post today at Floortime Lite Mama and I was intrigued to watch the TED video from Aimee Mullins. I do not have time to share my thoughts today but I really wanted to share her talk because I felt it was really great.

Aimee Mullins: The opportunity of adversity


 

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03/25/11

On Games: They Are Helping Us

After watching Temple Grandin and reading this particular article and a few books, this past holiday we decided to work on turn taking and game skills. Temple shared how it helped her a lot learning turn taking and with David being SO into games, we felt that we should use the knowledge that David had gained about learning and games. He LOVES games, me not so much. It depends on the game. David is all about the strategy and I am all about reading the rules.

David likes to take hours playing games, doing role-playing games and those with deep story lines or other games like Risk.

Me, I like straight forward, tell me what to do, let’s play the game and then I feel satisfied that we finished it. I don’t care who wins. I have programmed myself not to, otherwise I get obsessive about winning. There is a whole history behind games and my dad’s side of the family that I will not go in to, but it caused me to not want to play games as an adult. Let’s just say the obsessive winning thing is genetic. Ariel is like that, if she doesn’t win, it is the end of the world. She is getting better. Joshua just loves playing, he doesn’t care if he wins or looses he just loves to play much like David.

Daniel, however, has not had a lot of interest.

He has played games off and on but it has been very hard to keep his attention most of the time. In the past few months we have seen a change in this. There were several games that we focused on to help with certain skills we felt we all needed to work on. David has done a ton of research on how games are great learning tools. He can go on for hours, days, years about board games, role-playing games, internet games, chess….whatever game, he can talk about it and share how it can be used as a learning tool. His mind automatically does this, when he sees a game, he will say that it can be used for math, reason, strategy, language, storytelling, and many other things.

I look at a game and I see rules that must be followed.

I do not share that special interest but I do learn a lot and have had my mind opened to interesting ways of teaching through David’s special interest. All of that to say he talked me into using games. He will send me game information and tell me how it may be good for school and I decide which ones I could use best for school and learning skills. It sounds like it may not be too fun but actually, I have observed the kids learning faster by adding games into our curriculum.

All of the games are learning tools without anyone feeling like it is.

I need particular games to play with the kids because I do not like role-playing games. David will play games with them like Heroscape and he modifies the game or they will make up game rules together.  I do not enjoy playing The Hobbit or Lord of the Rings, (he has all three) like they do. Daniel and I sit out and do our own thing, it seems he doesn’t much get into them either. However, sometimes he does join them. We finally chose several games that we have gotten over a course of time, while they have gone on sale over throughout the past year until now. There have been several different skills that we have been working on. They are as follows:

  • Turn Taking
  • Learning Make Believe/ Descriptive Story Telling
  • Learning Rules/Following Them
  • Winning/Losing
  • Having Fun
  • Communication Skills
  • Social Skills
  • Strategy
  • Motor Skills
  • Math/Reasoning
  • Reading
  • Completing Tasks

So far we are seeing some big improvements with all of the kids.

I am pleased with my ability to be able to do the list above as well. :-)   Playing games has improved Daniel’s communication with Ariel and Joshua. He is starting to tell them clearly what he is thinking or wants a lot of the time, instead of using me as a mediator. I have seen this improve much more rapidly since we started focusing on doing games together. There are several things I have seen a lot of improvement on. I really like to watch them enjoy themselves as they learn. We not only use board games but interactive internet games as well. We have a huge lot of software from graphic drawing to ancient history. The internet as well has many free resources for games.

We are a multi-sensory learning family, since that comes naturally to me and the kids just absorb, it works well.

Since we started to really focus on the story telling and trying to act out our stories, Daniel has recently asked for a doctor set. He has actually been connecting with David quite a bit. David has a tackle box with his “doctor” stuff in it and Daniel asked for his own so he could “be like Daddy”. Since this was the first time he has ever asked or connected like that we got him a set.

We also got Ariel her vet kit that she has been wanting since before Christmas.

Joshua wanted Lego’s, what else is there in the world? :-) It has proven to be a great buy, Ariel and Daniel have been playing off and on with their sets. They will lay out blankets on the floor and set up an animal hospital and people hospital. Joshua is their assistant, which means getting every stuffed animal and doll in the house, so they can be taken care of. I don’t know if this will help others but I thought I would share how games have helped us.

Here are some pictures and I will give links for people to check out if they feel like it.

Here are some reads about board game learning and a few about video game learning if you are interested.

Edutainment in School with Board Games

The Home Education

Currents in Electronic Literacy

TEEM: Computer Games in Education Summary Report

TEEM: Full Report

National Summit on Educational Games Fact Sheet

Summit on Educational Games site

And now for the game links I have pictured! I have other links of games we have that I do not have pictured as well. (I do not make any money off of these links, I just use them because they normally have good photos and descriptions.)

Star Wars Trouble

Minotarus Game

Lava Dragon

Rory’s Story Cubes

Jax Doodle Dice

Sleeping Queens This game has a very interesting story that can be read here: Sleeping Queens–Our Life in Cards

Coloretto

Think Fun Blocks All of the sets can be found on this link along with more similar games.

Pretend Play Doctor

Dalmation Vet Kit

Here are some games we have that I do not have pictured, they are either upstairs with David or in the other closet. :-)

SET

Quirkle Cubes

Uno

Upwords This game has helped Daniel and Ariel be able to create words from other words.

Jenga They use the Jenga blocks as regular blocks as well. They get pretty creative with them.

U-Build Sorry

We have a lot more, David and I actually played a lot of games before the kids were born. (I do pretty well with limited people playing, I felt comfortable with David and was able to have fun.) I have used them for a while with trying to do therapy but it didn’t actually resonate with me until I read the article that Temple wrote and connected what David had been telling me about his research. So there you have it, I guess I will say David was right maybe I should have listened to him in the first place. :- )


 






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03/24/11

Where Is My Oscar??

After I downloaded all the information I could think of from the autism symposium, I had thoughts about how well I did socially. I had many reasons for me to feel anxious about going. David and I decided to go together this year, but last year I went alone and that was an intense experience. It was the first time I had ever left the kids with David all day long. Of course, I trusted David, but Daniel was still using me as the sole “go to” person and David didn’t always understand what Daniel meant. This year the children were staying with my mom for more than 10 hours. We have never left the children that long. I believe the longest we have ever been away from them is about 4 hours and that has only been a handful of times.

We have always been close in the area too, this time we were going to be a bid farther.

If anything were to happen it would have taken us a while to get to them. I am not a helicopter mom, this is the reality of our life. We are limited in relationships, family, and in people who understand how to take care of the needs of our children. Anyway, I had that running through my head, plus the whole intimidation factor that I feel when I am around a bunch of people who seem as though they have more knowledge or authority than myself. The symposium is open to the public but it is largely for continual education in various fields, like ABA therapy, psychiatry, occupational therapists etc… Since I am just a renegade mom trying to help her child, I feel like I am going to be condemned by the medical community or feel inadequate to speak about what knowledge I do have.

I consume a lot of information but I never seem to feel like I “know” enough.

In order to help myself with this, I research before I go to anything like that. I try to make sure that I understand what they are talking about and write down questions that I may have ahead of time so that I will not get side tracked. I have found that if I research and write down focal points for myself, it is easier to process the information coming at me. I also go over every social situation I can think of and have a scripts running through my mind, just in case I talk to someone. I had done everything I could ahead of time to try to make it smooth in the morning but then I forgot all of the other things that I needed to do. I made breakfast, then realized that I had not packed the kids lunches and snacks, (I thought I already had done that) I needed to make a list of foods and how much Daniel could have. I had to get the kids dressed, but I needed to get ready. So I had a minny meltdown when David came downstairs and he had no idea what was going on, because I never told him what I needed help with.

I assumed that he knew what needed to be done, I forgot he cannot read my mind.

I started to have a panic attack. My heart rate went up, I started to sweat and to hyperventilate as I was running across the living room to get ready. David was telling me “it’s ok, we are not late, everything is fine”. I was also talking to myself saying “It’s ok, it’s ok, you are ok” as I kept counting to 10. Finally, I calmed down this happened twice, but with the help of David and my self-help, I was able to stop from going into full-blown panic. The drive was good and it gave me time to calm down and prepare but I was really out of it. When we got there I got lost again, last year I got lost and it put me into a full-blown panic attack and I almost went home. There is something about the complex that I cannot remember the directions, they have two signs with the same street name and I couldn’t remember the markers. I was starting to get very upset because it just doesn’t make sense for me not to remember. Why couldn’t I remember!!

We found it, we were early and it was all good.

David told me not to get upset with myself because he got confused too. I was still a bit frustrated since I had been there before but my mind was off from the anxiety. We went in and registered and then I saw my friend who coordinates the event and I had a moment of relief. She came and talked to us for a few minutes and took us into the event room. It’s huge and I was pummeled with fluorescent lights and their buzz, but I noticed the chairs. I asked her if they were new chairs and indeed they were new chairs. Last year they were light blue and they had a glare, this year they were navy blue, they seemed to stop the bouncing fluorescent lights from going all over the room. I was happy about that because last year the chairs were bothering me very much. We sat down in a good spot and people began to sit down as well. As there were people sitting down at our table, I felt this need to talk to them but I had no words. I couldn’t even say hi and no eye contact. Then a very nice lady sat down between me and one of the other women, she started a conversation with the other woman.

I was curled up in my little personal space ball, looking down studying the papers from the packet.

I curl up like that a lot in social situations because I will start to get chills and in a way I feel protected. The woman said “Hi, I am Tina, what is your name and why are you here, continual education?” Well there were a lot of questions, I kind of stared blankly for, what felt like a year. Then my mouth took over before my mind and since she asked why I was there, the flood gates opened and I couldn’t stop the words from flowing. I went into my whole  “I have anxiety” spiel, I tend to do this when I am nervous. Then I went into my autism spiel.  I do not know why I do this, but I will just download information without even realizing what I am doing. I can’t stop myself, somehow the information just comes out before I have time to think. Then I feel foolish, but I have done it so many times now that I just have to shrug my shoulders at myself. It allows me the freedom to talk. It opened up her talking about her adult daughter who is currently living at home and she is concerned about.

I shared some things that she felt was very beneficial, so I feel like I was supposed to share.

In the middle of our conversation though, I noticed the other woman who was sitting there and I had not addressed her at all. I interrupted what I was saying and said “I am sorry, I didn’t ask your name. What is your name and why are you here?” I realized that this was the wrong time only after but everyone was fine with that. She was a wonderful woman who just moved in town, she was originally from Japan. (Our prayers and thoughts go out to all of those affected by the recent disasters.) She worked with autistic children in Japan with a main emphasis on social skills. She said that they were about 3-5 years behind in working in this area with children on the autism spectrum. I was doing very well with both of the women, staring at their foreheads and blurring their eyebrows so they thought I was making eye contact. Then somehow I got David involved, I tend to do that when I no longer know what to say or I am just tired of talking.

We tag team during social events.

As he spoke another couple came in and sat down, they had kind of negative energy from the get go, but I figured that she was about 7-8 months pregnant.  I think most women are kind of cranky during that time, especially if they have to sit all day in an event that they may not be that interested in. David was sharing about how scripts help us and our children and that we try to make as many social scripts as possible to help avoid the social anxiety that I can have. Then the woman passed a note to her husband and did an eye roll at David. What was that? I don’t know but we went on and then they started to introduce the speakers. Earlier, my friend had warned me that they were doing a buffet instead of packed lunches, I panicked for a moment. I hate buffets! All I needed to know was the flow, just tell me how it will go and I will work out the other details, of keeping my distance from others, not freaking out because I do not know who or what has touched the open food, and the many hands touching the plastic utensils, I could go on but I will stop there.

Later, as we filed into the  buffet line, I noticed in the corner of my eye that the pregnant couple was behind us.

I thought that she may be starving and tired so I turned around and offered for them to go ahead, she declined but thanked me. I remember what it felt like to be pregnant and having to sit for long periods of time and also needing food. My gesture seemed to change their attitude toward us because the rest of the day she was very kind and tried to talk, but I was so overloaded by the afternoon that I wasn’t the best with my acting skills. I kept trying though. The murmur of all of those people, their smells, the food smells, the coffee smells, the microphones having different volumes, the clapping, everything was starting to take over my senses. By the third talk, the words he was saying started to sound like a foreign language and wouldn’t make any sense. The last speaker was the worst with that because she spoke very fast and I could not read her lips. BUT I still managed to be nice to people and keep very small, small talk. I was also able to retain more information than I thought I had.

I had a positive reaction from the first woman I spoke with, when I told her about my anxiety.

I shared with her and the other woman, during the beginning of our conversations “Right now I am fine, I can talk and have no problems because this is a topic that I like. My anxiety will not kick in until after we leave and it can last for days.” She had no idea that could happen. She told me “Well do not have anxiety when you leave here, everything is fine”. That actually helped a lot. I begin to have anxiety before I do something, but while I am doing it I feel fine, in fact I will think that it is going very well and I will feel good. After the certain something, my mind starts to go over every detail and repeats every word I said or what other people have said and then comes the anxiety. I am fully capable of forcing myself to go and do things, I try new things, I do not have a phobia or fear of people or trying something. It seems that I have so many “bad scripts” that I am full of anxiety, mainly it is that I do not know how to read people. Body language is new to me, I had no idea any of that was going on so I do not have scripts for that, yet.

I understand that my brain is causing anxiety, I am not wrong for having these feelings, but they do get on my nerves.

I am excited to have a very positive script from this year, since last year I gained a negative script because I had a panic attack, got lost, and I almost went home. I did manage to talk to a couple of people but I did not have anyone with me to tell me if it was positive or not. This year was much better, except I forgot to say good-bye to people. I was so overloaded that I no longer saw people, we just left and then I felt horrible for not saying good-bye. David reassured me that they would be ok, they are adults and it is fine, I still felt bad. I know that the goal is to keep trying to get more positive experiences. I know that it is not my doing that I have anxiety. I actually try to do everything I can to stop it. I try to keep myself in peace as much as possible. However, during this time I  my sister coming the next week and I was excited and anxious, which makes it harder for my anxiety to calm sooner. I had prepared for the kids to have their own form of anxiety meltdowns as well. Even though they love being with Grammy and everything went perfect the entire day, the next day was rough.

That was expected.

The kids were not used to being away from us that long, they were not sure when exactly we were coming back. The anticipation got all the brain chemicals flowing. We were all exhausted from the social exposure, we went to bed at 8pm two nights in a row. My mom was still recovering several days later because she is not used to that either. We were all off for a few days, but then the time change sent us for a loop. I forgot all about it. We were all doing well but it was a lot of change that week and a lot of anticipation. Overall it was a great day and very much worth it for everyone. We will all be better equipped the next time. I now have scripts stored to help the kids and myself. It went much better also because I was able to talk to David on the drive home and both of us were able to process the information with no interruptions.

I was excited to actually see some of my acting skills and my mirror neurons working well, I gained some positive scripts to add to my “brain files”.


 

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03/23/11

Pretty, Pretty Tired….

My sister and crew left yesterday, it all went really well and I have some great things to post once my mind and body have rested a bit. All of the kids did amazing but I can feel the any second, any thing could be “the one” to cause a meltdown moment. It was a lot of social, sensory, change, and activity but it was a very good and positive experience. Now all of us are going to be processing everything we have gone through and our feelings, that is always indeterminable. We just never know how we will respond, I have gotten better at early signs and helping before things escalate, however it is still a mystery how each of us will process. But so far all is good and I am thanking God for the miracles that did take place and the ones that are happening right now!

I was so happy and thankful to everyone who commented on my post regarding relationships.

All of you gave great insight and had very helpful input. So here is my shout out to:

Aspergirl Maybe

Lisa @ Alienhippy

Bruce @ Born 2b me

Diane @ Don’t Panic

Thank you all so very much and I truly enjoy our internet relationships!


 


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03/17/11

Feeling Really Off

I did not realize just how much of an impact last week had on me. Even though, I knew that I was going to need some down time.  I knew that all of us were going to have a few rough days from all of the excitement. But I forgot about the time change, that has really messed us all up. I also didn’t realize I was so overwhelmed. We had some moments of serious stressful events that I will not go into but it was a bit scary for David and myself, nothing major but we were not expecting it. Everything is fine now. My sister, niece and my sister’s boyfriend/ex-husband/friend, I am not sure what to call him, is coming this Saturday and will be here for several days. I am excited but also full of anticipation. I am not worried about the time that they will be here, but I am a bit anxious about how all of us will be after they leave. I never know how the kids will respond. Especially, since they haven’t seen them in about four years and it is a whole new experience.

The stress of these things have been really hindering me.

I have been reading blogs and wanting so much to comment, I then cannot get the words out properly or I feel intimidated by other comments and feel that mine really add no value. It is so silly. I plan on going back and writing comments when my brain has settled down. I also went over another one of my posts, I haven’t posted yet, that I wrote about with my social encounters at the conference. It seemed to get my brain going and that made me even worse with my brain frenzy. There is nothing bad or negative, it just gets me thinking and analyzing. Plus I just got off the phone with my sister so I am on a “phone high” right now. Sometimes I just want to shout BLAH!!!! Ok, so I just did.

Despite my spazzy self, there are some really great things to write about.

Daniel chewed gum for the first time yesterday. He did it twice for me. Yea! Today I had the kids make up their own stories, standing in front of us and doing an improv kind of thing. The title was “My Day with a Dragon” I got that title from a book. They insisted that I go first, so I did, while I was acting out my story, Daniel jumped in with me and repeated what I was saying and did my body movements. Then Joshua created his story that had bits of my story, Daniel did bits of my story (HUGE) and then Ariel did hers with a kind of, I am a way cool story-teller, attitude.

And they were all was super cute and awesome stories.

Daniel has been getting books and spending time looking through them, today he picked out books that we have movies for and asked me to read the books than watch the movies. I said ok because he hasn’t done that before, maybe once with Wall-E but it has been so long I cannot recall. I recently discovered that he can read. He is starting to sound out words really well and I wasn’t aware he was doing that until recently. He sounded out “electricity” the other day and I was very surprised and asked David if he had taught him how to read the word, David had not. I am pretty happy that the things I have been teaching them is being absorbed. I know right away with Ariel and Joshua but with Daniel it is a bit harder because he will not always express to me that he understands. Discovering that Daniel is doing these things makes me feel encouraged with the current curriculum, teaching tools and methods that I am using for him.

I enjoy watching his excitement with doing new things and sharing what he has learned.

Today he grabbed hold of my arm and said “I got you Mommy”. He sat next to me and wrapped his arms around my legs. He was giggling and looking at me, then he said “You and me are together”. He has been asking questions like “What are you guys talking about?” He has really been watching and listening to our conversations. Also when the TV is on he has been observing the people or commercial and asking “What are they talking about?”. He is even asking this with songs and when I read books, he will ask ‘What do they mean?”  These are pretty great moments that I do not want to forget because my brain is all funky and not flowing well. I forget things when I am like this so I have to write it down. I think that is all I can remember now. I know the rest of this month is going to be full of all kinds of excitement too. I plan on implementing some of the tools for relaxation and helps with sensory/social issues to make our recovery smoother. I am hopeful and looking forward to the rest of the month. I know this may sound wrong but I am looking forward to having company come in town so all of us can work on our social skills.

I think it can be a good learning time.


(I wrote this last night, I just wanted to clarify.)


 

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03/15/11

Not Understanding Relationships

Recently, I read a post by a woman who has a son on the autism spectrum but she is not. I like reading her perspective, but at times it is hard for me to understand her humor. She seems quite aggressive and things come across as mean to me. I know that this isn’t the case because I have been reading her for a while and that is just her personality. One of her recent posts was about friendship. She gave several types of friends and her definitions of them. I know that she was kidding quite a bit through out the post, since I have learned to understand her humor, but one thing she said in a joking manner was something like if you have to ask if we are friends, then we are probably not. For me this is not a joke, I do have to ask.

I found her post quite helpful actually.

I would post it but she would consider me one those “creepy lurkers” because I have not left a comment on her post before. My reasons for not commenting on many posts that I read comes from anxiety, I am not a “creepy lurker”. I don’t think….. :-)   When I read her definitions, I thought ‘oh, these are good to remember” the problem is, I won’t. I am one of those people who has to ask if we are friends. I never know. I am the person who is unsure if her family really wants to talk to her. I have some sort of disconnect when it comes to relationships. Even though intellectually I understand that my family loves me, I have never felt like I belonged or that they necessarily like me. At times when I have gone long periods without talking to family members, I have assumed that they no longer love me and they no longer have a desire to have contact with me.

I am then surprised to receive a phone call or card in the mail with them telling me that they love me or miss me.

I have lost friends because of my inability to understand that we are friends. I remember one time, I had a girl from church over and we were talking and hanging out, at some point she said that I was her best friend. I knew that we talked a lot, we hung out at church and outside of church but I had no idea that we were friends, let alone best friends. I do not have  a clear definition of friendship in my mind. I know how I like to be a friend and that is by helping others. I will be there for whatever they need. If they are moving, need a ride, need help financially, cleaning their house, going to new places (for them), you name it I am pretty much there for whatever. If they let me know and I am able. I don’t expect anything from friends. In my mind, if we have emailed we are good. If I see them once in a while we are good. My main problem is not knowing where I stand with people. If you don’t like me, fine, I am good with that, just let me know. If you do like me, great, just let me know. I have anxiety about the not knowing.

I have noticed that I have kind of a detachment.

I have several friends that live in different states that I have known for years, decades and I will not contact them at all. If they call me or email me it is like we are in the exact same place as we were from the last time we had contact. In my mind they are on pause. Our interactions may be a little odd at first but they quickly jump right into the same place as well. In my mind, I left them in the same place, same time and same feelings. When I discover things about them that have changed,  I am shaken because I do not see how that could have happened. Then I will realize that 10 years have passed! After that I have to retrain my brain about the friendship. I have to go over everything because for me it is like meeting a new person. I will tell myself that we are friends, it’s ok that they have changed, I need to let things go, that was in the past, they are like a new person now, get to know them. I do the same thing with family. If I am in constant contact with the person I tend to do a lot better at understanding the relationship, but I will have clueless moments.

As I read the other blog about friendships, I felt so idiotic.

Why is it that I do not know if my family really cares about me or if I am really friends with someone? I am not beating myself up, I am seriously wondering about it. I know at times I feel disconnected to my kids, not to the point that I don’t love them or take care of them, but I will question if they even like me. Do they even want me as a mom? I will ask David and he of course tells me yes, they love me , yes they want me as a mom. I have many times asked David if he is going to leave me, not out of fear or insecurity but because I feel that disconnect and think that he feels it too. He doesn’t, it’s me and he has no intentions of leaving me. I also think I do that to prepare, since I have had people cut me off for what seemed like no reason what so ever, I learned to prepare for those things or do it myself before some one can hurt me.

My inability to read relationships has caused me to over-analyze .

I think one reason I now over-analyze relationships is because in the past I have been tricked by people pretending to be my friend or I have been in abusive relationships without understanding that I was being abused. There are only a few people in my life that I know will not reject me but still I think about those relationships and have those feelings that at any minute they are just going to stop loving me or liking me. It seems so silly to be an adult and not be able to understand what friendship is or to even question who is my friend. Or if my family really even notices if I am around or not. It is very hard to explain but when I think about family members who live far away, I feel like they don’t think about me.

I feel like I do not exist.

I do not say that in a way that is beckoning for sympathy, it is like a calm understanding and I find it ok. I am fine once I come to the conclusion that I do not exist in their world but then when they contact me I get all shaken up again with emotions. I try to understand my role. I have shared before with some of my family my feelings about this and they tell that it is not true. I believe them but there is no better way to describe it other than saying I have a disconnect. As hard as I try to believe it, feel it, understand it, I still feel a void. In the past this void has caused me to become friends with anyone and continue abusive relationships because of my lack of understanding. I am not sure if I was able to articulate all of this properly, I hope I did. I do not know if others feel this way, it would be nice to know if they do.

So if you have any understanding  or can relate to what I am talking about please comment! :-)


 

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03/14/11

Current Documentary Watches

I am in a documentary cycle again. I tend to read then go searching for documentaries on the topics of interest and flood my mind with as much information as I can. The last time I shared my documentary flicks was in September 2010 and I was basically on a food rant. :-) Those can be seen here Need To Download! If you are not up to reading my rant just go to the bottom of the post and you can see the documentaries I have listed. I know a lot of them from that post and this post are from PBS but I enjoy them.

So here are the current documentaries that I have watched.

Frontline: God In America

I felt that God in America, gave a rich history of America and faith. I learned a lot and it triggered me to do more research.

Frontline: The Medicated Child

I found this interesting, I am not sure exactly how I feel but it gave me things to think about and research.

History Channel: The Dark Ages

I love history and I used to watch a lot of history documentaries but I haven’t been able to in recent years. (My other special interests took presidence.) I did manage to watch this one and enjoyed it very much. I learned some new things and it gave more things to research.

National Geographic: The Gospel of Judas

Hmm…What to say about this one? I did find it very interesting but I don’t know, I can’t put my finger on it but it seemed to be missing something.

National Geographic: The Gospel of Judas Link

Documentaries I am in the middle of watching.

This Emotional Life

This documentary has proven to be very beneficial so far. I am on the second episode, and it too has given me resources and tools that can help me a lot with emotions. There is so much in each one that I will need to re-watch them.

The Calling

I really like this one so far because it goes through people of different faiths and their journey of feeling a call from God.

Documentaries in my queue to watch (Netflix queue)

Turning Points in the Physical Sciences

Frontline: Growing Up Online

Frontline: Sick Around America

PBS: The New Medicine

PBS: The Greeks: Crucible of Civilization

PBS: Empires: The Medici, Godfathers of the Renaissance

PBS: The Buddha

Let The Church Say Amen

The Bible According to Hollywood

Single: A Documentary Film

Nursery University

Escape From Suburbia


 


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