Tag Archives: sensory overload

05/25/13

Props To The Old Man In The Car

Deep breath… wow has this week felt never-ending. I wonder why when things happen they continually seem to happen all at once. I cannot remember having a calm moment in months. This week started with me pushing Daniel to do 8 hours of school on Sunday. Yeah, it happened and it was rough. Then, I had to push him Monday and Tuesday in order for him to complete all of his lessons by the designated date. He did it! He did not complete his last two portfolios in their entirety, but he did most of it.

He was exhausted and hit his limits.

He still did his OT, Speech, and reading helps classes. (With a couple hiccups) He was sad that he would not see his teachers and therapists. He does not really know how to process summer break. We hope to get the same therapists next year, but it is not set in stone. It would be very beneficial to his progress if he did. Everyone knows this, but things happen so we just have to wait and see. He will have his Special Ed teacher next year. Yay! She is working on trying to set up Joshua’s assessments  and accommodations too. I am thankful that I know her and she understands where I am coming from. It would be wonderful if Joshua were to get the teacher that Ariel and Daniel had this year for his second grade year.

It would help him because he has met her and ME because she already knows me and I know her.

I am already feeling anxiety about meeting Ariel and Daniel’s new teacher next year. I really hope I can connect to them. However, I am a little freaked out wondering if it will be a man. A man!? Then, I think maybe that would work out better I do tend to get along with men better, BUT what if he is a man that I cannot relate to and he does not understand the needs of my children and he won’t listen to me because I am a woman and he has a voice that gets on my nerves AND he thinks he knows everything in the entire world and and… AND what if it is a woman who is like that and what if she does not understand the struggles my children have and will not listen to me because she does not like me and…

I will stop with the “ands.”

Thursday was the last day of school and my mind hopped on the “new teacher” anxiety train. I did it throughout my entire school career why not do it with my kids too. ;-) OK! We made it through to Tuesday pretty well. On Wednesday, I still had to squeeze five hours of school out of everybody. I managed it, barely. (Same thing for Thursday these kiddos were tired, me too.) However, on Wednesday I scheduled a dentist appointment for all three of them. I know, what was I thinking? That is another post. It went well for the most part.

I planned to have a nice calm day on Thursday.

Um, nope. The floor decided to spew water all over the place leaving nice puddles for Joshua to fall on sliding down the kitchen floor like a Slip-n-Slide. He did not think it was fun. Wet clothes are never a good thing around here for us sensory sensitive folks. As I investigated the matter, I discovered that the kitchen pipe was leaking and it was under the floor causing water to come out through the seam at the base of the cabinets. I had already had a slight panic earlier that day because the owner’s (we rent) sister came by to look at the yard and the frog pond. We told everyone repeatedly that it was bad. We had asked several times for them to send someone out to take care of the landscaping (it’s in the lease) and each time they said someone would – no one came.

I was told NOT to touch the landscaping; we are to take care of the grass and leaves.

We have been trying, but the leaves are ridiculous because we basically live in a forest. The grass is looking good. I was nervous because even when nothing is my fault I take responsibility for it. I feel badly if something is wrong because I feel as though I am responsible for this house because I am living in it. I felt the same way with the kitchen pipe. The frog pond is a mess and we discovered that it was supposed to be covered. The cover is in the garage. No one told us and the gardener was supposed to put it on!

We are not responsible, but I still feel bad.

I felt anxiety about that and because of the anticipation of her coming. She DID NOT come at 8:30 am when her sister said that she would be here. With every minute that she was not here, the more anxious I got. Finally, I told David he had to talk to her. I was almost in tears at 8:49 am when she finally arrived. Then, we had to wait for a maintenance person to come and check out the kitchen. I could not think straight, my head was fuzzy, and I felt panicky and nervous until the guy arrived.

Thankfully, the kids had computer reading classes that they could do.

He discovered that the main kitchen pipe burst and he made plans to come the next morning. (I am getting to the old man part, hold on. I am sharing all of this because these factors contribute to Daniel’s response that I share later in this post.) He had to take out the pipes and replace them, turns out it had a slow leak from the time we have been here or before. I had to make unscheduled plans with the kids because well, it is just much better to take the kids out to do something than to try to explain every single what, why, where, when, how, so and so forth to Daniel. He would have been too anxious about everything going on. The noise and smells would have sent him to a massive meltdown.

I decided to take them to the park, have a picnic, and to the library.

We went to the park and a little boy tried and tried to make friends with Daniel. He asked him his name, and then asked me his name when Daniel would not answer him. I told Daniel to tell him his name and asked him if he wanted to play with the boy. Daniel said, “No, I don’t want to.” So I called for Ariel, but the boy did not want to play with her. I called for Joshua and they were a perfect fit. They played the entire time. Daniel was happy doing his thing – alone. Ariel was sad because she had no one to play with. I decided that she and I needed to play on the bars and the monkey bars.

There were groups of preschoolers coming in and out while we were there.

Daniel loved it because he likes to play with younger children and he LOVES babies. He is so cute to watch. He is very gentle and smiley with them. Another little girl who seemed about Ariel’s age came, she was very shy like Ariel. I decided that I would try to bridge the gap. The girl became comfortable talking to me, it helped that I was doing flips and hanging upside down off the bars. She and the other little kids thought I was the coolest mom. Daniel even started to participate by hanging on the bars and said, “Hey, mom look at me!”

After a little while, the girls took off to play among themselves.

000DRAFT-do-not-criticize-what-you-dont-understandI stayed back helping little kiddies get on the bars and swing back and forth. I thought to myself, I am very good at making friends for others, but not for myself. This has happened numerous times in my life. I have been able to connect people and they become friends then, after the connection it  seems my part is done. Just an interesting tidbit. 

We had our picnic and headed to a store so I could grab something to eat.

I did not have enough time to pack myself a lunch and I was starving. Everything went fine, but Daniel was showing signs of being overloaded. I managed to get him out to the car and that is when it happened. I stopped Daniel from going into the car first because Ariel and Joshua have their seats in the back. They needed to get in first; I had been telling him this all day and he kept forgetting.

When I did it this time, he lost it.

He started yelling at the top of his lungs, “I keep forgetting! I keep forgetting. Why do I keep forgetting?” I looked around not to see if there were people around, but because I was confused by his response. I did not understand why he would be so upset about forgetting something. (Of course, I did! I do that too.) As I looked around though I saw in the corner of my eye the old man sitting in his car right next to us, window down listening to the news on his radio. I ignored him, quickly hugged Daniel, and said, “It’s ok, we forget things sometimes. It is ok to forget.” He was banging his body into mine and then, he tried to pull away from me screaming a blood-curdling scream that ripped through my ears.

He would not get into the car.

He started crying, repeating, “Why do I forget? Why do I forget?” I continued to reassure him that it was ok and there was nothing wrong with forgetting and that there was nothing wrong with him. He did let me hug him and give him some deep pressure, which calmed him enough to get him into the car. When I got in, I asked him if I needed to take him home to have a break. He said, “NO! We are supposed to go to the library!” I told him that we could not go if he felt like that because it may be too much for him. I reminded him of how much we had done and that it was ok if we needed to go home for a break. He said that he was going to be fine and that he did not want to go home.

I buckled the kids, got out of the back, saw the old man, and said, “Sorry, for the screaming.”

I was sorry that it was so loud, I was not sorry for anything else. I must give some props to the man. He did a head nod, a little finger up move without a judgmental face or word. I got into the car took a deep breath, opened up my turkey wrap and off we went to the library. The library went great. A few moments of “almosts,” even though Daniel was tapped out he still wanted to stay. Ariel and Joshua were tired and really wanted to get home. Luckily, grandma was coming over to give me a break so when I told Daniel that she would be there soon he was ready to leave right away.

“Grandma with the white hair” trumps ALL things for Daniel.

I know I shared quite a bit in here, but I had a lot to process. These are outside sources that have affects on me (and the kids) inside my mind there is another whole perplexing and complicated world mixed with emotions, social, sensory, and whatnot. I was happy with the fact that yesterday I had no thought whatsoever about what another person might think, say, or do when Daniel was having a hard time. I am glad that I was able to understand his frustrations about forgetting. I was happy that I could help him and have the situation end with him feeling good about himself. I was VERY thankful that the old man just sat there.

His head nod, finger move, and nonjudgmental silence made me wish a lot more people would do just that.

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05/12/13

Happy Mother’s Day!

I have such great things to write about when I get a moment. I will be able to share some details about how my mom and I have such “awkwardness” when we first see each other after it has been awhile. Several things have come to light that helps me understand even more of our differences even though we are both Aspergers women, and the differences with my Grandma who my mom and I are quite certain is an Aspie too. We are three generations of unique Autistic women who have managed to navigate through this world with no understanding or help. It has made for many life struggles and challenges, but it also reveals how much we have overcome and persevered on our own.

I am not big on celebrating Mother’s Day. 

Neither is my mom or Grandma, we met for lunch today and completely forgot to say “Happy Mother’s Day.” Even after my uncle had stopped by and brought my Grandma flowers. Lol! After remembering, I said, “Oh, I am sorry I did not get you guy’s cards or anything.” They both shrugged and said, “Either did we.”  I love that! There is no guilt or condemnation. We know where we stand with each other and we just enjoy our time together. After lunch, we went to the mall, because my mom and Grandma like shopping. I do not, but I do enjoy walking and talking with them AND Grandma bought me a cute dress and top. Score! :-)

It has been a good day, but I am exhausted. 

The mall sucks all of the energy out of the three of us. The sensory stuff really drains me and when I feel crowded by people and merchandise it gets to me. Still I had a marvelous time with the two ladies that influenced my life the most while growing up. I wish a very wonderful Mother’s Day to all the mothers out there. I hope that you are having a great day, if it is day that causes you to struggle my thoughts are with you. There are many reasons why that could be and for those reasons, I sometimes do not say any anything about Mother’s Day or Father’s Day. (((HUGS))) to any of you who may need one!

May your heart be filled with joy and peace today! (Each and every day.) 

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04/28/13

High School Trauma: Road to Recovery II

I did not recognize it until the next day, but I went into PTSD (C-PTSD) symptoms. Anxiety filled me, as well as irritability, I was shaking/shivering, cold, nauseous and I started to fixate on facebook. I made myself get off, I had tears, all the sudden I felt ugly, worthless, depressed, panicked at noise, everything became loud and buzzing. I could not eat and I could not sleep. I felt alone and scared. It was not until the next morning that it all made sense when I was still having those symptoms. They were intensified because I had not slept in a couple of days and because  of my confusing interaction with Joshua’s teacher, but at least I was able to understand what was happening.

My high school days were some of the most painful and confusing times.

I was in an abusive relationship for three years of my stint in that school. However, I was unaware that I was being abused. I knew that my unnameable fears and anxieties were at high levels during that time. I was stalked; my personal space and time were continually violated. Other girls who called me things like “slut” and “whore” bullied me. There were rumors spread about me that were vile, I found out later that my boyfriend said many of them at the time, or my so called friends. While I sat at home babysitting my sisters taking care of the household because my mom worked 50-60 hours a week, and my step dad at the time was a drug using, drug selling, womanizing  lazy jerk, there were claims that I was out partying and hooking up with numerous guys. Nice.

Many other things happened too.

I felt like I had to continually watch my back. Several girls hated me and I did not know why. Many guys confused me. My teachers did not change their attitude toward me either. I had two teachers who ever said anything positive to me. My U.S. History teacher, who said that he knew that I was much smarter than I let on and my literature teacher who said she wanted to see me in advanced literature. She was impressed with my writing skills and with my major assignment that I did on “Death.” My economics teacher did compliment me because of my hard work on a stock exchange project we did. I did get an award for that – I just remembered that.

It is hard to remember any good memories because there were so many traumatic ones.

In my home life, my social life, and at school. I had no safe place anywhere. I was in the vice-principles office often. Either for skipping class or smoking. I was in the nurses office a lot too because I always felt sick. They never asked me why, they always assumed I just did not want to go to class because I was a delinquent. I could not tell them that a math teacher made fun of me all the time in front of the class. He was the football coach and found it amusing to mock me when I asked questions. I could not tell them that the P.E. teacher found it amusing to measure my BMI and then proceed to call me obese. (He said that he was joking.) When I was maybe 120 pounds. That was a great thing to say to a teenage girl who had a boyfriend who was already calling her fat.

I dropped down to 100 pound by the next years.

I could not tell them that I skipped and hid in the bathroom because I found a huge bag of marijuana in my step dad’s coat pocket one day and I just needed to be alone to try and process what to do. Or that my boyfriend accused me of cheating on him. Or that my mom woke me up at three in the morning demanding that I do the dishes even though we had no dish soap so I was forced to use powdered laundry detergent. I could not tell them that the boys made derogatory comments to me that half the time I did not understand so I did not want to be in class. I could not tell them that several girls in another class that I was in threatened me.

No one listened and I did not know how to be heard.

When I tried to tell my story, they did not believe me or thought that I was being unruly because I could not get my words out. This caused me to have meltdowns, one major one with screaming, hitting, and raging in the office. IN ADDITION, when that happened I recall at least once being asked if I was having my period. That is not even the half of my life that happened while in that school. I understood how important it was for me to go and turn my thoughts into positives. I really wanted to see my niece perform. I wanted to be there for my sister, and I wanted to see my dad and step mom. I decided this time around I was not going to internalize my fears. I shared a little on facebook to get it out. It gave me the strength to text my dad and tell him that I was having problems because of all the negatives I had associated with that place.

Thankfully, he was supportive along with my sister and step mom.

They did not make a big deal out of it, but I could tell they were trying to “be there” for me. My dad met us in the parking lot. The school looked so tiny and not scary at all. It felt very different walking in there with my kids. It had only a momentary affect on me. When I looked down the hallways, my lung filled with heavy air. It smelled the same; I saw my locker when I was a senior. I saw the hallway where my other locker was when I was a freshman. The foreboding left as quickly as it came when I walked into the auditorium. It was where I had been in a beauty pageant. I discovered that pageants were not my type of thing, but I had positive memories of that day. I had memories flood of when I was in choir and my performances.

Eww, and that horrible electric blue dress we all had to wear that one year! 

It made me laugh. We sat into the front row and all three kids did great. They sat the entire time and relaxed in the semi-dark to some tunes. Daniel asked a bunch of questions, but he did an amazing job at sitting there and trying to be quiet. He enjoyed himself. During the performance, I noticed that the woman I had talked to about music therapy was there. She recognized me and came up to me afterwards. She said that they have been working on a project to start “Sensory Friendly” concerts. She said, after watching Daniel she knew that it would be a great project to start. We talked for a little bit longer about the summer schedule for music therapy and went on our way.

It was a positive social interaction for me (with a woman) in my old school. 

The whole thing was positive. When we were leaving, my dad decided that he wanted a picture of my locker on the way out. Another guy, went by the lockers with his wife and he had the locker next to me. I did not remember him at all so I think he was a couple of years before me, but I am not sure. I am not sure I would remember many faces from my school days. I took a picture of the kids in the hallway to help melt away the past memories of those hallways being filled with negatives.

Their smiling faces consumed them.

I walked out feeling a little more whole than I had before. It felt good. I could finally, look at the building and feel peace. I feel a little teary eyed right now in a strange sort of way. It feels as though I have lost a large chunk of my identity, but that I have gained a large part at the same time. I think I am going to be able to pull out some positive memories from school soon, after all of these negatives ones settle their voices. I knew coming back home was going to be challenging and liberating – I am glad that I am here.

A few resources. 

Psychological and Behavioral Impact of Trauma: HIGH SCHOOL STUDENTS

Signs of Trauma in Children

Types of Traumatic Stress

Happy pictures! 

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04/28/13

High School Trauma: Road to Recovery I

I had not realized how much school associated trauma affected my emotions and anxieties while dealing with the kids teachers this year. I will get to my high school situation in a moment; however, my reaction about my high school was enhanced due to an interaction with Joshua’s teacher so I need to process it. I experienced bullying from grade school onto my high school in various forms. Many times, my naivety caused my downfall. I would not understand jokes, innuendos, behaviors etc… at the bus stop, on the bus, in the classroom, or out on recess, and that led to being made fun of constantly.

I was made fun of for the “odd” things I said and did.

I was made fun of for my birthmark and my looks in general. The kids made fun of my clothes, my mom, and my home. Others things as well like, how I could not stay quiet or still in class. Similar types of mockery went on through middle school and high school. I did some stupid things because of my naivety. I was clueless at the time, but I wanted to be liked and I wanted to have friends. If people dared me to do something, I would think that would make them like me.  It only got me into trouble, made me more of a mockery, confused me, and caused feelings of isolation and depression.

The only group that accepted me was the “rough” crowd for the most part.

[There is just too much to write about.] They made fun of me too, but it was for my innocence and they found it amusing to have a girl in the group who had never kissed, done other “naughty” things, who did not smoke, or drink. Some of those things changed quickly enough. I was still a prude in many ways and it was funny to make fun of me for being that way. In grade school, though I noticed how my teachers did not see me in that light. They treated me as though I was the “bad” kid. I was ignored or I was being disciplined for my disruptive behaviors. I had problems sitting still.

In conduct, I regularly received a U for unsatisfactory.

I could not stop talking. I had problems writing. Art class was torture for me because of all the cutting, drawing, painting, multiple sensory and fine motors issues, and at that time, dealing with abstract art for me was very difficult. (Now I love it.) I was placed in intermediate reading even though at home I was reading encyclopedias, Grimm’s’ Fairy Tales, Aesop’s Fables, and various types of poetry and literature for fun by nine years-old. Though I loved numbers and understood them in a unique way I could not grasp the way they taught it in school and I was placed in basic math. I fell through the cracks.

I was invisible unless I was acting out.

I was sent to the hall many times. I was forced to beat chalkboard erasers to clean them as punishment, which was so painful to me that I would be sick for a couple of days afterwards. The dust made my stomach hurt, it made my nostrils raw, and I coughed for days because the dust seemed to be stuck in my lungs. It dried out my eyes and made them burn. The worst part was that I could not get the residue off my fingers and hands. Even after I would wash them, I could fill the dryness caked to my skin. It was awful!

I have all of that infused to my brain when it comes to teachers.

I especially have the anxiety and fear of not being heard by them. I would get in trouble for acting out and the majority of the time I was acting out because another child was messing with me, or I felt trapped in a desk forced to sit and listen to something that we had already gone over 50 million times! When I would try to explain myself to teachers, they only saw me as being disrespectful, unruly, and obstinate. I had no voice and I finally took on the perception of myself being nothing more than a nuisance. I felt that way at home and at school.

At the beginning of the school year for my kids this year, I had to work through those feelings.

I did not realize it at the time. I assumed it was all my social anxiety, it was a big change, and it was new. I did not know what to expect so I was anxious. I felt much better after talking to Daniel and Ariel’s teacher. I felt all right after speaking to Joshua’s teacher. However, by my next interaction with her I was thrown. I will not go into great detail, but she and I just do not click. I have not been able to find any sort of understanding of her way of communication and it has caused me to spiral into some severe anxiety attacks throughout the school year. Joshua had made several comments in the beginning of the year about her that I assumed were probably his own anxieties.

After a while, though I listened to him.

I think we just do not know how to communicate. Some people you cannot find a way to reach equal communication. I have found it difficult because I get on well with all of Daniel’s teachers and therapists. I have explained to Joshua’s teacher my concerns about his reading issues, yet his academics are excellent. He barely needs me at all for math or science expects to read or write out some words for him. He does great in language arts as well, except he has problems reading the computer screen. He takes a little longer to process his words when reading in general. I am concerned about him having dyslexia and I have sent an email to Daniel’s special ed teacher about getting Joshua evaluated through the school.

panicIt was prompted after my interaction with Joshua’s teacher Friday morning.

I will keep this part short, and in fairness, she has been gone on maternity leave for several weeks. It was her first week back. In a way I am happy that all of it transpired because I also asked about getting Joshua evaluated for Aspergers or ADHD through the school. I am waiting on my psychologist to get him scheduled for an evaluation, but it looks as though it will be the middle of the summer. Daniel’s special ed teacher will be working with Joshua and me for his IEP if he is diagnosed so it does not hurt to ask her questions.

I know I give so many details!

I am trying to stay focused. Because of all that had happened on Friday morning, I was struck with anxiety and fear. I became fearful because I had emailed several questions about Joshua and about Daniel in regards to adding more accommodations to his IEP. I started to become overwhelmed with fears that they all think that I am a bad mother and that I do not do enough for my kids. Then, the thoughts that they feel that I am a helicopter mom and want ALL of these accommodations to make it easy for my kids and myself. I started to panic that Joshua’s teacher would want to retain him despite his high scores and massive improvements that he has made.

The final anxiety blow was about Daniel.

They decided to move him forward to third grade because of how much he has progressed and improved. I started to fear about that, but I had no definitive fear, just a foreboding fear. Those thoughts were consuming my brain and then, the plans for Saturday started meshing in there too. My plans for Saturday started to mix and mingle with my other lingering anxieties. I take the kids to the YMCA so Ariel and Joshua can do gymnastics. I had originally, planned to take Daniel swimming during that time, but now they have scheduled swim lessons. That means we have to wait until Ariel and Joshua are finished then go swimming. I am at the Y for almost three hours. :-/ My dad texted me earlier in the week and said that they were coming for the weekend and wanted to know if they could see us.

Our schedules were not working out.

I found out my niece was going to perform in her choral on Saturday and I thought that would be a great thing to go to, something new for the kids. I was waiting on my sister to tell me the when and where it would be. Ok, so I had all of that anxiety from earlier with the teacher, my general anxiety about family coming and being at the Y for almost three hours, (trying to keep Daniel entertained for an hour) then, my sister texted me the time and that it was going to be at my old high school. My body sunk for a moment. I had a strange response that I cannot articulate. I thought, “Well that sucks.” and moved on.

However, my subconscious self did not move on.

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04/21/13

I’m Too Tired… Product Of Overload

I was going to attempt to finish the post I was working on, but my brain is just too exhausted. I am fighting with an array of emotions for many different things. This week was a rough one for Daniel.  He refused my help on several days, and I was not able to bring any peace. This can make me fall into sadness and negative thoughts. The reason is that I get overwhelmed with thoughts like, “I am the only one who knows how to help him and if I can’t then what?”

I have fears run through my head about never finding a positive solution to help him.

I know that this is not true. However, when I do not get sleep, breaks, and the school schedule is overwhelming for the week, I get tired. As I write this I seem to have an apologetic tone.  In a way, I do feel like I should apologize. I have this feeling that I should be sorry for not having all that it takes to be a parent that is fully capable of handling every situation that arises. That sounds ludicrous writing it out, but I am sure I am not the only mother who has or has had those thoughts.

I have given my energy to helping all three of my children and doing my daily tasks.

I should not feel as though I am less for not being “spot on” with everything this week. Sometimes I have no idea what Daniel needs, MOST of the time I do. However, those times when I think of everything possible, I do everything I can think of, and then, go in search of answers and still find none, those days seem to wipe out all the other days that I do have the answers and can help him. He is much better today and this week looks promising. I am drained and quite honestly ready for school to be over.

I need a boost to get me motivated for the last couple of weeks of school.

It is not helping that I am extremely frustrated with standardized testing. I have read entirely too much about it the last three days and it is getting to me. I think if I take the rest of the day off from thinking about school stuff tomorrow and reading that information I will do much better. I hope. I need a break from negative language starting from how people talk about themselves or our world, to how people talk negatively about autism. I thought about what could have happened to Daniel this week if he was in a school setting.

I thought about how he could have been treated.

I thought about how people would have perceived him had they witnessed what he was going through. I knew that most likely they would not have considered all that he had done in the two weeks prior. Not because they are inconsiderate, but because the way we process and are affected by change, environments, sensory stimulation, and social dynamics are so foreign to them that those things would not be in the forefront of their minds. They would not have considered all of the social activities he had done. They would not have considered everything that he was still processing from all those situations. They would not have thought about all of the sensory input and social settings that his brain was still pondering.

Without clear context for some because many of them were new for him.

They would not have considered the weather changes, pollen floating around, or how the pressure changes affect him. They may have thought that he was being unruly and obstinate by refusing to take his tests or work on his research paper. Tests that are about 50 questions with reading comprehension and math problems that he has not done before. A research paper that I have had to convince him repeatedly to work on over the course of several months that is due soon. He still sees no purpose in it and this coming week I have to find a way to convince him to try to write a few paragraphs of it.

Sigh… that makes my heart hurt just thinking about it.

He is feeling better, to force him to do so much handwriting, well that could be too much. Granted he has had several months to work on this, but it is a challenge to convince him to do assignments unless he finds a good reason for it. I tried many different ideas and repeated some. The one that worked this time was reminding him how much he loves sea turtles. I hope it lasts through the writing part. I could be wrong about how he may have been treated. We could find a great school staffed with grand teachers who are able to devote such time and energy on thinking about my son’s needs and how his brain processes.

It is not out of the question.

The reality is even the best teachers are not always equipped with the time or resources for that. These thoughts do ring through my head because when I cannot help him, I begin to question whether homeschooling is the best for him. When I thought about all of that, the one thing that did help him when nothing else could was reminding him that it was ok. When he said things like, “Why do I do this?” I explained to him how he is affected by all of those I mentioned earlier. It helped to understand that nothing was wrong with him, we just needed to find better ways to help him decompress. Some of his behaviors were not ok and the positive is that he knew that.

He tried very hard not to fall into them.

When he did, he apologized or said that he did not know what else to do. Now that is HUGE progress. I can understand not knowing what else to do. I can understand much of what he was feeling; I only wish I had the answers to help this week so that both of us could have had a better week. The most important things that happened this week was that Daniel knew that he was accepted no matter what and that he was understood. The week is over, we are moving on, I had to process, (I have my own overloadeness that needs to be processed as well.) and now I am letting it go. All is good despite the freaky weather! (Ariel and Joshua did just fine, they each got extra alone time with me or David. I have found that helps a lot when we are having a rough week.)

Picture time.

 

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04/18/13

Family (Dys)Functions

A couple of weeks ago, some of my family threw me a birthday party. Many things went well and I did have a great time. There are certain things that my family thinks is funny to do. One is doing things like getting me a princess crown for my birthday and making me wear it. They know how much I do not like crowns or girly type of things like, PINK anything! Lol!

Or lots of hugging!

I do admit, that I have felt more comfortable hugging them in the last month due to changes in them and me. In the past, I was unsure if they were being mean, joking, or just plain insensitive. I now understand that many things that are done are simply because it has always been done. My dad’s side of the family grew up picking on each other and tormenting each other. They bullied each other. (There is a LONG history that goes into the why’s.)

They played tricks and spoke things that apparently some siblings do.

My mom grew up being picked on and tormented by her father’s family. My grandfather was sometimes the cruelest man I ever laid eyes on then, in the next moment he could be sweet as honey. I was confused by the mocking and picking on from both sides my entire life. It makes me sick to witness such things; it was detrimental to my mental state when I was the focus of mockery. I soaked in every word believing them to be true. My confusion would heighten when I would address it, and ask why they would say or do such mean things.

I was told it was “a joke.”

Why wouldn’t I think it was funny if a family member made fun of the way I ate, or laughed? Why didn’t I find it amusing if they made fun of the clothes I wore, what color my hair was, if I did not understand a joke and asked what they meant? Why wouldn’t I laugh it off if they called me a “spaz” or “dingy.” Why would I get my feelings hurt and feel horrible about myself when I was around them? I understood recently, that these things were not about me. I also, took note that on both sides of my family they did not do it to me as much as they did it to one another. I noticed that they made fun of all of their own quirks, sensory issues, obsessions, etc… as well.

The difference that I understood about myself was that I did not do that. 

Throughout my life, I did not mock my oddities or myself until someone else started mocking me, or mocked their own that were similar to mine. I believe I have shared some this before. I did not tear apart my appearance until someone else started doing it to theirs, or nit-picked at my appearance. I did not feel badly about myself until someone made me feel as though I should. I did not see myself as being “wrong” or “flawed” until others implied it through their jokes and mockery, of either themselves or me. Once the self-deprecation and negative self-talk would start out of others mouths, I began to mirror. My mom did this constantly, she has gotten much better at stopping, but I grew up with it. After years of this, from my mom onto virtually every family member, I took on the script of self-deprecation.

I already had this realization a while ago. 

However, what I am writing about now is how this no longer affects me in the way that it used. I understand that I mirrored that behavior in order to protect myself. I did it with my classmates, friends, significant others, co-workers, and family. I did it first so that they could not do it to me. This was learned. I watched my family become hurt or upset at the words or actions that other family members inflicted. I also, observed that their defense was to counter attack with another “joke” or “put down in a loving way” (sometimes not so loving) toward the person who started it. There were many innuendos and slides that I did not understand.

I did not catch many that were directed toward me. 

I was either oblivious (still am) or it confused me so much that I would shutdown. None of this would catch up with me until hours sometimes days later. I understand that this family dynamic is most likely never going to change. The digs and jokes are their way of showing affection as well as  indirectly speaking unpleasantries to each other. I have learned that many people communicate like that – I still do not get it. My mom and sisters do this with each other too. I find it all odd because it hurts me when these things are said or done. As I was thinking about this more, I realized that lately my family has been doing this even lesser than before.

I am grateful. 

I think that the reason is that I have been so vocal about my confusion with these things and that I shared with them how I no longer had any idea if any of them loved me. That was the truth. I felt so unlovable and so broken that the thought of anyone loving me seemed impossible. I was also, so confused by the social dynamics in my family that I could not filter through their words or actions properly. They have stepped up and have tried to keep reminding me that I am loved and that I matter.

I hate the fact that I need this validation because it makes me feel weak. 

That is a whole other issue, about me wanting to be independent and never needing or wanting anyone. I have observed in my family that only the weakest links share their emotions or express their need for validation. It is indirect and eluded to, but it is there. Several things have helped me to let some of that fear go. The changes that my family has made has helped, my uncle sharing with me on a facebook comment that he was diagnosed with depression and got help, and me remembering that I do not think that my quirks, oddities, or the way that I think is wrong.

I do not feel wrong. 

I cannot change a person’s perspective about how I respond to things. I cannot change how people think about me as a person. I cannot change how people perceive my “Autismness.”  What I can do is be honest and share what hurts me. I can tell people that I am not broken, I am considered disabled, and I do have many challenges, but I also have many strengths. This TED video Aimee Mullins: The opportunity of adversity, I have watched several times now to help me process the word “disabled” and society’s perceptions.

I find myself in a limbo type state of understanding my own disabilities, but not feeling disabled. (That I am still pondering.)  

I have had to go through a process of self-acceptance, especially with discovering that I am Autistic. I am still unable to share with many family members because I do not feel that they will be able to accept it. It is not because they do not love me, but because it is a hard to grasp. It is difficult to process that the person you have perceived one way your entire life is not that way at all.

They are not thinking like you in the slightest.

The way they interpret the world is so vastly different that you are unable to comprehend it in the least bit. There are also the revelations of all the times you have hurt them or damaged their psyche without even knowing it. I would think that those who care for you would be heartbroken if they discovered that their actions and words contributed to PTSD. I have gone through my revelations of how my actions and words have been misinterpreted causing pain to my family.

Granted all I can do is move forward and little by little explain how I think and why I do the things, I do.

That opportunity would never have opened up had I not shared the severe pain and isolation I was feeling. I took a chance because I had reached the point of despair. I no longer had anything to lose. I knew that I had to reach out and if I was rejected then, I knew! It was a choice of moving on without them or moving forward with them. I am thankful that my family is trying and they are accepting me where I am, but I am in control of what and when I share. I am determining what is healthy to share for me not because of them. (I hope that makes sense.)

I may be able to share that I am Autistic one day with them. 

However, I realize that my attitude before was too abrasive and demanding. I expected them to change immediately with my sudden changes. I went through many stages of feeling hurt and rejected by the ways they have responded toward Daniel. When I finally, accepted and understood I expected them to do the same. People do not work like that. They do not accept differences and changes instantaneously. They do not change their wording from “wrong” to “right” in a day. They will not see “disabilities” in a positive way the second someone says, “Society needs to change.”

Changing minds and perspectives is a gradual movement.

It happens little by little, those who change their mind rapidly normally have not built a strong foundation for their own thoughts. They usually sway with whatever the new perspective is in the moment. Whatever facebook or Twitter is telling them today is what they believe and fight for. In the last month, what I have noticed in the home front is my family being more open to listen about Daniel. They have been more accepting of his behaviors and interacting with him more comfortably. They have not been looking at him in the distance, but they have not been pressuring him to interact either.

All of this has made me feel more comfortable and not on the defense. 

I have dropped my expectations of wanting my family to accept that I am Autistic. I feel as though since, my defenses have gone down they have become more accepting of him. Is it my perceptions changing or theirs? I think it is a little of both. My thoughts about all of this has given me even more reason to believe that the way we can change the perceptions of Autism is to find the bridges to communicate.

It requires breaking down defenses and being open-minded.

It is hard to find that balance. It is hard for me not to get offended when I hear negative words used to describe Autism. It is hard for me to try to be compassionate toward people who speak about Autistics as though we are broken, wrong, and/or disabled. It is hard to keep a positive image of myself when these things are said about me and generalized over Autistics. It is reality, people still feel that way because we live in a word that needs labels, distinctions, “us vs. them,” normal and not normal even though neither can be accurately defined.

I still see a world that requires a wrong or right.

Until we can all accept the gray areas, it will always be here. All we can do is impact as much as we can in our space on earth allotted to us and be satisfied that we have done our part. I am slowly changing the dysfunctions that were ingrained into me growing up. I am picking them out piece-by-piece and making dramatic changes in myself.

I no longer fear going to family events.

I no longer feel the need to push understanding on them. I no longer feel afraid that I will fall into mirroring self-destructive behaviors when being around them. I no longer fear that they will hurt me. I see with clarity that all of my fears and defenses caused me more harm than, they did.

I know who I am in this moment. (I will reach some other level of me later, I presume. :-) ) 

I am accepting myself more each day. Their support and validation has helped a great deal, but I could not have gotten to this place without doing the work in myself first. Families all have their dysfunctions, but they do not have to control or define who we are. Something that I have learned in a new light is that I CAN create my own healing even in the midst of dysfunction. I did not think that was possible before, I thought I needed to escape or isolate, but I do not.

I have the strength to change even when others around me may not be. 

It is not always easy; there are some people who have to be distanced or even cut out of your life. That decision has to be based on how toxic they are to you and your mental state. There is nothing wrong with getting away from toxic relationships. However, if their most damning of torture is to make you wear a princess crown on your birthday, I think they can stick around.

Some pictures of the event.

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04/13/13

Our First Autism Awareness Event, Um …

Last night, I took the kids to an Autism Awareness event in town. It is the first time that I have been able to take them for various reasons. It was the first year that I felt that Daniel would be able to go and enjoy himself and want to participate. I was not sure what to expect. I tried not having any expectations. I knew that I was walking into an event where it was called “awareness” and that word can have multiple meanings depending on each person’s perspective. I was not sure if the organization that was heading it was for acceptance or had other feelings toward Autism.

I had done my research about them and by all that I read they seemed to be very accepting.

Though, I still was not sure and being that I had so many negative experiences where we lived before I am very cautious. Little history, I had several churches claim they were accepting only to discover they thought Autism was demonic and/or Daniel needed healing or deliverance. NOT. I also, reached out to another organization that claimed they were there to help Autistic children with therapies, cost of therapies, and connect families for support, only to discover that they were pushing a cure Autism agenda. That is only a couple of experiences I had, I do have a few more, but I think that is enough info to explain my cautious attitude.

I kept my guard up and knew that if I felt or saw any of those types of things that the kids and I would just leave.

Thankfully, it was in a school only minutes from our house, easy to find and it always helps when we do not have to be in the car long. All the kids can get car sick, and Daniel still has moments of car anxiety that can be triggered going to new places. It was at a school in their gymnasium. We had to register when we got there and everything seemed very smooth and positive. The only thing that bothered me was that they had a DJ, blaring loud music that did not seem appropriate for young children, who have sensory issues. We could feel the vibrations out in the entryway. It was thumping and pounding, Daniel started to ask why his body was vibrating and why was it so loud.

I told him that we did not have to stay if it was too loud, but he said that he wanted to go in.

Everyone was very nice, but no one talked to us. They all just looked and smiled. I took it upon myself to take the kids around to play the games and make some crafts. They had a table sitting out with T-shirts to buy, but I was not sure what that was for until later. I was a little confused by everything because it was my understanding that it was an event for families with children who are Autistic and who have disabilities. They said on their website, to come help celebrate autism awareness month by coming to the event and that they provide this program as a service that is for families in our community raising a child on the Autism spectrum. (I paraphrased that.)

Here is where I had expectations.

What I read about the night indicated to me that it was for families raising a child(ren) on the Autism spectrum and to share information and resources offered by the community. No one spoke to us about the dog therapy when we went over, several times, to see the dogs and pet them. They talked to themselves and the dogs just sat there being pet. When I went to the table where the T-shirts were to see what it was about, no one talked to me except to ask what size shirt I wanted. I said that I did not have any cash; she asked if I had my checkbook. I did not. I had not expected to be giving money. I clearly did not understand the purpose of the event. She seemed to not know anything about what the organization offered and directed me toward a several handouts, but her main focus was for the fundraiser.

In my reading of the information on the website, which I read several times, I did not notice the fact that it was a money-raising event.

I could say that was my own confusion, I honestly do not know. Maybe I read things to literally, I do that you know. :-) I was very pleased to discover that they have a positive outlook about Autism. There were several people wearing shirts that had the puzzle type of logo, but the images swirled into words that said, “Autism Embrace the Amazing!” Their organization uses their funds to provide help for families who cannot afford therapies, help with legal issues, getting SSI information and assistance, they help advocate for the rights of individuals with disabilities, and have parent support groups.

Their main purpose is to improve the life of young autistics through support and acceptance.

That made me very happy, and the atmosphere, though it felt odd to me was not negative. I am glad I went and I think the more events I go to the more I will get a feel of how to interact. Possibly, another event that is more directed specifically toward Autistic families will be a better fit. It was a wonderful experience for the kids. They had so much fun playing with all of the sensory toys and running around the huge gym. I do admit, I was a little worried when I realized we were in a school building. I never had to think of it before, but now my mind goes there. What if someone without understanding was to come in and attack solely based on the false perceptions of Autism from media and certain circles. I hate that I was thinking of that, but I did.

I had to scan the gym, look for the exits, think of an escape route, just in case.

I was not paranoid; I only felt that I could not be that naive to believe that everyone is accepting of Autism. That is what all of the negative media has done to me – it has made me cautious and feel that I need to protect my children from ignorance that could turn to violence. I did not think of it long, only to have a plan and move on. Because of that though, when Daniel was digging around in a toy bin for what felt like forever, (he could not decide what he wanted) and I lost sight of Ariel for a moment, I felt anxious. I scanned that gym like a hawk. When I located her, I told Daniel that I would be right back; I did not go far at all to yell for Ariel to come closer. However, when I turned around Daniel was gone.

Again, my eyes scanned the gym like a hawk.

Panic started to set in because I could not see him, finally, I spotted him. He was walking very fast straight for the exit. I could tell that he was in a panic from behind; he was walking faster and faster. I was yelling his name, his hands were flapping, and everyone just watched. I thought that was very strange after the fact. I told Ariel and Joshua to stay there and I ended up in a full on sprint because he was heading out the exit doors, and no one stopped him. :-/ I caught up to him, put my arms around him to give him a squeeze, and then, turned him around. His face was red, tears were in his eyes, and he was breathing heavy. He could not even tell who I was.  I kept looking at him, squeezing his arms, saying, “Look Boo, it’s mommy. I am right here.”

After about the fourth time, he was able to recognize me.

Then, he said, “I thought you left me.” I reassured him that I never leave him and that I was right there. He apparently, did not hear me when I said that I would be right back. I said it three times, but I think it was all too much to process with the noise, toys, and excitement. I found it odd that no one stopped him or tried to stop him after they saw me yelling his name and running. I would have stopped any young child heading toward the exit doors without a parent, but that is me, I guess. He does look older since he is so tall …

I think writing this out indicates that I do have certain expectations.

I did not realize it, but I do. Overall, I am very happy with how everything went. The kids loved it, Daniel enjoyed himself, and the noise did not affect him the way that it used to. Even 6 months ago, we would not have been able to stay very long. We stayed for an hour and a half last night! We all left feeling good. The other thing I discovered was that the event was to help raise money for their Autism Awareness walk that is happening in a couple of weeks. I would like to participate, but I do not think I will be able to. I do feel that it was good for us to get out and try it. It definitely helps me with my social anxiety. I was confused at first, but then, I sat and thought about all I had observed.

I watched the young and older ladies line dance to music like Cotton-Eye Joe and I Am Sexy and I Know It.

It felt off, but I did enjoy seeing some of the kids that were there having a great time dancing. Joshua got his groove on to some songs and then, Daniel jumped into a little moves too. It was great! As I observed the volunteers and some of the other people who seemed to know each other, the words, “This is for them.” popped in my head. I realized that there were sensory toys and stations set up in the gym, but the bulk of the event seemed to be geared toward the people that already knew each other and for those who are not Autistic. I had a moment when I understood the lack of collaboration between autistic adults and autistic events.

It is one thing to read about it from others, it is another thing to experience it. 

While, I fully understand the need to do things that will reach people not on the autism spectrum, I wondered if they would be willing to work with adults on the spectrum. It also, made me wonder what kind of event could be done for us in my community. I see us do a lot of campaigning and activity via the internet, but I have not seen too many activities that are done by Autsitics at a local level. Though, I have only thought of this and I have not done much research. There could be things, I just need to look. However, I do know that in my community there is not anything. I have been in communication with a woman in town who started an Aspergers adult group last year, but it dwindled due to several reasons.

She and I have still been trying to think of activities that would be good for the group. 

However, life has been a bit hectic and full of activity so I have not been able to spend much time on that either. I think I am going to set some goals that will be attainable in the near future with this, but I also plan to set goals for next year’s Autism Awareness/Acceptance month. I plan on reaching out to this organization and meeting with another woman in town that heads up a local support group to get a feel. Of course, my first plan is to get connected and learn who these people are as people without any pressure on myself about these goals I am thinking about. I want to meet others who are working with the autism community in my town. I am hopeful because of the positive attitudes I have encountered so far, in every new social adventured, we have tried.

I am excited because they have been accommodating, accepting, and kind. 

I am not sure where I am going with all of this, but I am processing. I do know that I would like to be more active in the community. I think it would be great if people were willing to listen to an adult autistics locally. Who knows, if I were to speak up maybe I could find others around here who would like to as well. I would like to find more mothers who are autistic themselves, I think it would be beneficial to find more women in my real life, but if that is not the case I would like to be open to other mothers who I could connect with. You never really know who you can find some sort of bond with, it may not be related to being a mother or autistic at all. I could find a friend at the YMCA in one of my classes.

Something has shifted in my thinking that I noticed last night. 

I did not feel so lonely as I looked around and saw everyone talking, laughing, and hanging out. I did not feel hurt when people did not talk to me. I was satisfied with smiles and short conversations. I was not seeking them to understand my son or me. I was simply content and at peace observing, understanding certain dynamics, and enjoying all the children and my children. I was not offended at the lack of “autismness.” I understood what and why they did what they did. I think it sunk in for the first time that if I want something to be “Autism Friendly” that I am going to have to jump in and do something about it. I will be pondering this. Next! I can’t wait to write my next post sharing about all of the awesome things that has happened with the kids this week. It makes my heart overflow with joy when they are happy and proud of themselves!

I feel that last night turned out to be a spectacular evening on multiple levels.

Pictures!

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04/5/13

Celebrate Good Times, Come on …

I am quite chipper today. I have a huge sense of accomplishment in multiple areas of my life. I feel like celebrating it! I feel much better about Autism Awareness/Acceptance Month. I am excited about all of things that have been happening. (Look here Autism Acceptance Month.) I dealt with my personal issues and anxieties. I finally, came to the conclusion and acceptance, once again, that I will never make everyone happy.

I will participate in my way and not feel badly about how I contribute.

I think my fears are triggered by the familiar feelings that I have from church settings. (long story) I have moments when I feel as though I am an Autistic and Autistic parent who does not belong in the Autism community, and other times I am overwhelmed with understanding, belonging, and acceptance. I am not sure how to articulate those feelings very well.

I am not sure if others feel that way too, but I thought it was worth sharing.

I believe I have written about it before, however, my mind is spinning with all sorts’ positivity. This week I FINALLY fulfilled many of the goals that I have been talking (writing) about for what has seemed like decades. I got Ariel and Joshua signed up for gymnastics, which will start next Saturday. While they are doing that Daniel and I will enjoy some swimming action. :-) I signed Ariel up for gymnastic camp and Joshua into basketball camp for the summer. Daniel is signed up for Music Therapy social group for the summer session. I am waiting on his evaluation to determine if he qualifies for a Medicaid Waiver.

I hope he qualifies because his therapies will end when school ends.

The Music Therapy is covered under the waiver. They provide OT, Speech, academic helps, reading, sensory integration, as well as use the social groups to connect all aspects of the therapies. He would receive an individualized evaluation to work on his specific needs. It would be so perfect for him. He is naturally drawn to music and he uses it to help him process what he learns already. He loves everything about instruments, sounds, rhythms, beats, and on and on. He has taught himself several songs on the keyboard. He keeps asking for a “real” piano. I am keeping my eyes open for some great miracle of a bargain in hopes that something may pop up.

I also, registered Ariel into fine arts classes with a home school co-op.

She will be learning from a technically trained artist for drawing and painting 101. I think this will help her with her natural talents as an artist. She also decided to take Beginning Strings, which is taught by an instructor who holds a Master of Music and Suzuki Pedagogy. We will see how everything goes. It is fantastic to be able to experience these things. I admit I was a little concerned, I have seen some home school co-ops that have not been as professional. Not all are alike and I am NOT generalizing, but still I am not going to pour money into something unless it is worthwhile and will be beneficial to my child’s learning.

I think you know what I am trying to say. (I mean no disrespect to anyone, please know that.)

The woman I spoke with said that there are many girls her age taking the classes. Ariel and I are elated! She has been asking to make friends with girls, but it just has not worked out. I have been taking her with me Monday and Thursday nights to the YMCA to hang out with other kids. It has boosted her spirits. She really needs some time of her own away from the boys. She has been requesting it and I am happy to have a place to take her that she is enjoying.

I am amazed at my sudden fearlessness.

It is as if something has clicked. I have gained a whole new voice and perspective about myself. I have surprised myself at how outgoing I have been. I do know that I can be very outgoing, but then, be extremely introverted as well. Being introverted does not mean being shy or unable to be outgoing. I have noticed that after my social encounters I have taken the down time that I need. For instance, when I come home, after getting everyone else undressed, re-clothed, and taken care of, I take about 15 minutes to myself. This has made a huge difference in my stress and anxieties. I have also stopped worrying about what people are doing, or “trying” to tell me.

I assume that if they have something to tell me they will.

If they do not and expect me to “read” between the lines, that is their problem. I have no time for that stuff. I will no longer spend unnecessary energy on trying to figure out the communication twistings of others. It is their responsibility to tell me what they want me to know. If they expect me to read their mind, well that is simply unrealistic. I have taken on that mindset in my closer social circles. When I meet new people, I now go in not worrying about whether or not they will accept me. I go in with a positive hopeful attitude. If they like me and want to get to know me, great. If not, oh, well. I have boundaries and understand how to use them now.

Before I was desperately seeking for people to understand me, accept me, and acknowledge me!

The root of this issue was that I had not done those things for myself. I had been swallowed up in searching for an identity through others without realizing it. It is good to receive those things from others, but I should not look to others for them. Much of it had to do with being confused for so long about who I was and why I thought so differently from others. Why was I such an odd, quirky individual who did not even seem to fit in with other odd, quirky individuals? I have concluded that some days I feel perfectly fine in my own skin and other days I do not.

There are times when I can be extremely social and outgoing.

There are other times when I cannot. I will go with each cycle of myself and live happily accepting all of my different ways of being. Currently, I am in an outgoing, adventurous type of cycle. While I am in this cycle, I will get as many goals accomplished as possible. I will try what I want to during this time because it will give me the foundation of doing those things when I feel less adventurous. (lessening my anxiety in some ways) On Monday, I got to my cycle class late and all of the bikes were full. I looked at my aunt and said, “Bummer.” Then, walked down the hall to the next class, thought it was Zumba and decided to find out.

I walked in and asked what class it was; she said that it was Zumba.

I decided to give it a try. It was fantastic. I met several ladies that were very nice. I enjoyed myself and actually did not mind that much that I was in a room with a bunch of sweaty women, looking at a wall of mirrors! In the past, I would have gone home after missing out on the cycle class. I know I would have felt deflated. I did not this week, and last night I got to do Piloxing for the first time. Guess what? I love it! I will be going to spin class and Piloxing on a regular basis. That has changed too. I AM doing things for myself and doing things that I enjoy.

I am not only voicing when I need a break, I am saying, “I am taking a break.”

I am not sure if this side of me will be tired out by tomorrow after my family throws me my birthday party. My dad chose this week because last week was Easter and that would not work out for all of us. So tomorrow, I have family coming in, the party will be at my aunt’s house, and we will have another social event. I am looking forward to it. I think it will be good. Easter went great and we all had a great time. No meltdowns and it was very enjoyable. Daniel played on their piano most of the time. :-)

I know that I will need to take more down time after this weekend.

I have been going for two weeks straight with all sorts of new things and social situations. Yesterday, I took the kids to get their eye exams. I am so thrilled with how well it went. The doctor and nurse were perfect. They were so accommodating. They explained every detail for the kids as well as for me. They answered the plethora of questions that each of them had. I really appreciate it when people address my children with respect like that. The kids and I had fun; it was getting to be a bit too much for Daniel and Joshua after a while. We were there for almost three hours. However, all went well and we took the day to recuperate.

Ariel and Daniel are getting glasses.

Daniel is not too excited about wearing them. That may be a challenge. It all feels surreal. The kids and I have been doing so many more things out of the house and it has not made things worse. We seem to be much happier and calmer. Who would have though? And now I will celebrate these good times because as you know, it could change at any moment. Not that I am expecting horrible things, I am only expecting the best, preparing for the possibility of the worst, and enjoying all the great along the way! There are more things to write about, but I seem to be too babbly even for myself. I’ve been this way for a couple of days …

I will celebrate the last two weeks and the major changes in myself! 

Go Kool & The Gang! Lol!

 

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03/30/13

Birthday Exhaustion

Heads up, this is a rambly post. Its purpose is to share all of the social and sensory extravaganza that has been going on. Amazingly, we are all holding up and no meltdowns. However, I do expect that some may arrive in this coming week. After writing this out, I realize that we have been and will be stretched. It is good, but it will also require a lot of downtime for each of us.

Ok, now onto my ramblings and musing.

Yes! I am still talking about my birthday. I love birthdays. I love my birthday. Some people do not get into the whole birthday thing. I cannot say that I truly “get” into it because I do not ask for presents and I really do not mind if I do not get anything. I have made my own birthday cake for a long time now, if I decide that I want a cake.

I mainly make a big ta-do for the kids.

Still I do enjoy the day of me being born. I wrote a post that I will share, again; for any of my new followers that explains why my birthday is a big deal for me. AND HI! New followers, I am so excited to have new followers and thankful for my “old-timers.” hee hee Here is the post What’s In A Birthday? If you cannot tell, I am a bit goofy today.

I think it is from exhaustion.

Last week was packed full of adventures, but the last three days have been tops! I am surprised at how well the kids and I have handled it. We discovered not too long ago that this house had no instillation at all in the ceiling. The owners decided to put it in, and it was supposed to be two weeks ago. The maintenance people cancelled on me after I had already made plans to take the kids out for the day. For other families this may not be a big deal, for us it is HUGE. I have to prepare the kids, especially Daniel ahead of time. I have to pack all of our food because we cannot just pop in somewhere because of diet issues, not to mention sensory issues in restaurants.

Ok, so they cancelled last minutes and rescheduled for yesterday.

I tried to prepare by trying to have the kids get ahead with their schoolwork … yeah, that did not happen. Now they are a day behind, but spring break for starts on Monday so we have time to make it up. At some point, they called David and said that they were coming at 3:00 pm Thursday to deliver the pallets of instillation. They called me on Thursday at 1:00 pm and said, “We are in the drive-way.” They were here for a couple of hours. In the middle of that my grandma showed up expecting to give me a break, and Daniel is doing his virtual reading help class. Grandma got confused and thought we switched to Thursdays. We are back to Friday’s for my break day.

I skipped the whole conversation. :-)

She arrived at 2:00 pm, with Easter gifts for the kids; school did not move forward and the day was shot. I had already made plans to go to a Piloxing class. I went and the regular instructor cancelled last minute in her place was a woman who had to have been somewhere in her 60′s. She was a powerhouse! She did boxing and Pilates, but no dancing. Let me just say she was an inspiration. She had her hip completely replaced last year, she made me, and the other younger women in there sweat like beasts. It was awesome! She had a great spirit about her too, very kind and full of positivity. I am going next week to try the Piloxing, but I am very glad to have had her for my first time trying.

Do you see the pattern here?

Things  keep changing! Plans are being all messed up and everything is chaos! Well, maybe not that bad, but for me it throws me off. I made plans to take the kids swimming at the YMCA and then, spend the day at grandma’s house. Because of all of the “unexpectedness” and my change in schedule by going to work out Daniel was on the verge of meltdown Thursday night. When I came home, he was not very happy about me being gone. I was unable to get our lunches packed and ready like I had planned. I did get our clothes and other things ready. I had to get up earlier than expected because the men were supposed to be here by 8:00 am. I told them I would have the kids and myself out by 9:00 am.

Everything was going smoothly, UNTIL they turned on the machine to blow some sort stuff.

I have been over this several times with them. You cannot just turn on any sort of loud noise-making thing without giving Daniel forewarning and still there is no guarantee that he will be ok. The unexpected noise caused a spiral of noise fears for the rest of the day. He is already not a fan of the toilets in the family changing room at the YMCA – it was a major challenge to get him along with the other kids dressed. They all refused to take showers there so when we left I had to dress them and change plans to shower them (and me) at grandmas. Now the swimming was great, expect the water was so cold that I could hardly move and when I was splashed, I literally screamed because it felt like daggers tearing at my flesh.

It sucked the life force right out of me.

Everything started to go well at grandma’s house, but then I saw texts message from David. Apparently, the guys did not put anything down over our kitchen, living room, or garbage and within 20 minutes, they were all covered with almost two inches of dust. The whole situation was awful. Long story short, they stopped and covered things up, called for a cleaning crew to come, and will be back on Monday to clean all of the boxes and our personal items that are covered with dust. They wanted to come clean on Monday! They expected us to bring our three little one, who already have allergy issues, into this home for the next three days with almost two inches of dust, um, no!  How was I supposed to make food? Good grief.

They ruined our toaster and our Sea Monkey’s may die.

That has caused spouts of death anxiety again with Daniel. He watching them closely and is afraid that they will die. Then, he asked if he was going to die because he is breathing dust. Urg! They ensured us that the machine would not blow anything into our house and even when they saw that it was blowing all over everything they did not stop. They kept going. David grabbed all of the items that I had on the counters, it included toys, books, electronic items, and I was in such a hurry that I did not think of putting anything away. They also said that, “it will not blow into your house.” Sigh…

In the midst of that I received several texts and my sister called me to wish me happy birthday.

Now I was happy about that, but it was a lot of social interaction. Grandma is a talker too so the whole day was packed with talking, talking, talking! By the time I came home, I was exhausted. Daniel was in a fury because nothing was in their place and his toys were in bags. Thankfully, I did not have to cook.

We ordered Biaggi’s I had gluten-free yumminess!

I was actually so tired I went to bed with the kids at 8:00 pm unfortunately; my body and mind were unwilling to sleep. I was up all night. Then, Joshua and I went out to get Easter items for tomorrow. That was not bad, but still more sensory and social overload. We did dye eggs and we ate my cake. Tomorrow I will hide eggs out in the yard if it doesn’t rain and we will have a fun Easter morning then, head off to my aunt’s house for lunch.

More sensory and social!

I am excited about it, but there will be a ton of people and I have no idea how Daniel is going to hold up. Ariel and Joshua normally do ok until we get home. In a way, I am glad that we have spring break this week because we need a break. Next weekend my dad is throwing me a birthday party at my aunt’s house so that will be another big thing. I am doing really well for the moment; I think I am definitely going to need more downtime this week. I will also need to make sure I do workouts because that helps me a lot. I will have to do the same for the kids. I hope the weather is not bad then, I can take them to the park. I will try swimming too as long as everyone is feeling up for it.

I am taking the kids to get their eye exams on Thursday too!

Geez, I forgot about that. I have also been engaging in email interaction to sign Ariel up for a fine arts co-op. I have also been trying to stay in contact with the woman who heads the adult Aspie group in town. We have not thought of any good meeting ideas. Anyone, have any ideas?? I just downloaded a bunch of stuff. I have had a major shift in how I respond to all of this and that is great.

I am not feeling anxious or stressed.

I am only tired. If I get some good rest tonight I think that will be good. Please brain and body sleep! I have been able to help the kids too which, feels really good. The changes that I have been making have given a clearer mind to be there for my kids too. I am doing well so far, not to say I may not crack in the next few days, but so far, it is going pretty, pretty well. :-)

Want some cake?? (The cake is a lie!! Not really, it is only gluten-free it is still cake.) 

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03/19/13

Heart Tinge: Start of Anxiety

I wanted to share my other post about idealized love, but I still do not feel like it is right. (ready) My head is trying to process “obsessive” love at the moment and how there can be misread signs of an Aspergers person falling into this. I have even questioned myself as to whether I had obsessive love for someone. For me I find that thought frightening – I would never want to be that way toward another human being. I do not believe that I ever have.

The first line of the definition is:

“Obsessive love is a state in which one person feels an overwhelming obsessive desire to possess another person toward whom they feel a strong attraction, with an inability to accept failure or rejection.” I do not feel that Aspergers for the most part are actually doing this in the sense of wanting to “posses” another person. I think we become overwhelmed with emotion for the person and our inability to quickly process or understand our emotions can cause us to become fixated on the person to the point of feeling like an obsession. The initial connection to a person whether a friend or love interest can be new, confusing, intense, and override our senses.

There is also the added lack of understanding of social cues, so we may be obsessed because we do not know how the person feels about us. 

That could lead into fears, confusion, and anxieties causing us to misread words, actions, body language, and creating loops about every single encounter we have ever had. I have no clear knowledge on the topic, but it seems like our chemical reactions could go into hyper-drive. Especially, if we have found someone that has perked our interest when so many others seem lackluster and insufficient in comparison to the simplicity we can have simply engulfing ourselves in our special interests. Still I am processing and have no clear ideals or answers so my musings are to help my brain process. Possibly others will gain from my ponderings and whatnot’s.

Alrighty, on to my topic of the day. (May venture into another side topic that is swimming in my head for a brief moment.)

I have been paying close attention to my anxiety triggers for the last month. I have been detailing words and actions that cause a physical reaction in my body in order to discern what is actually happening. For years, I have allowed the physical affects to pass by without any thought. I did not think I could do anything about it. Several years ago, when I started to research anxiety I realized that it could cause certain physical reactions.

I had no prior knowledge about anxiety, really.

I had always assumed that there was something wrong with me. I assumed that I was the only one who ever felt that way. This was not the case at first. When I had anxiety as a child I assumed that everyone else felt exactly what I felt and could not understand why they would get so upset, frustrated, or confused by me. It took a while, but I finally concluded that I HAD to be the only one.

Now I know that I am not.

I was so comforted in discovering that others knew what I was and had gone through with my anxiety and panic attacks. It has taken me several years to get to the point where I finally realized that I could detect my triggers. There are several reasons for that, but I will not go into it. SO! Today was the first day that I watched the manifestation of what a trigger could do to me mentally. It may sound strange, but in a way, I stepped outside of myself and paid close attention to what happened to me both physically and mentally.

It started with the trigger.

I was happy this morning. I was feeling really good. Daniel and I went grocery shopping together on Saturday and he did great. We both had fun and we recovered rather quickly from the sensory assaults that attack in a Wal-Mart. :-) Sunday was a great day with the kids and me. Then, Monday we went to a new park and met Daniel and Ariel’s virtual teacher for the first time, in the physical world. These were some pretty big things in just a few days and everyone was still feeling and doing well. Today, I was feeling a little overwhelmed because I have not had a break in a while. My grandma has been sick and going to my spin class is not really a break because I take Ariel with me so she can get some social time. (And get away from the boys for a while.)

I was still feeling pretty good. I decided to set up eye exams for the kids.

I made the appointments online, which I liked very much. They called me to get everything squared away, we are not set yet, but it is in the works. I share that because one thing that my anxiety can feed on is WAITING! The unknown, the unanswered, the forever-lingering appointments, telephone call, email???? Here is where the trigger comes. I am all fine and dandy be-bopping proud of myself for making the appointments and I go to share. Then, I am told about how so and so went to their appointment and they got a bad prescription when they were a kid and it caused problem.

There was first a bunch of other words spoken that felt like a bunch of bees swarming my head.

heartPLAQUEtopWhen the negative prescription comment was made I felt a tinge in my heart. I say tinge because I do not know how else to describe it. It is the slightest of painful tickle. That is the best I can do. It feels like black and silver prickly thorns barely tapping at my heart.

It does not hurt badly, but just enough to cause an ache.

I tried to combat it with my own confident words knowing full well I am capable of taking my children to the eye doctor and ensuring that they get the best attention and care. I felt confident in myself after the words, but the tinge started to swarm my whole heart. It trickled into my belly. Self-doubt started to creep in. My mind started to wander and I went to facebook, which I knew that I should not go.

It happened!

I went onto facebook and started reading into things that people posted. I started to have the thoughts that I have no friends. That no one notices when I am not around. I stopped and stared at my computer screen knowing full well what I was doing. Instead of feeding it, I made myself sit there and feel it. I accepted the fears and the irrational thoughts of my anxiety. I knew what exactly caused it. My mood went from happy to irritable and somewhat sad. I knew what was happening, but I could not stop it. I decided that I needed to ride it out.

I forced myself not to take things personally that I saw on facebook.

I reminded myself that these thoughts were fleeting and they are not absolute truth. I was doing much better, but still feeling off. This is when I took notice of how I interpreted things that I read. Articles or posts that had the slightest trigger for me caused an instant irritation and a desire to go into a full on 2000 word rant. I stopped myself. :-)  Here is my sidetrack moment though. Today I saw this:

“Is your man distant, cold and insensitive? He could secretly be AUTISTIC. Two wives open up about their husbands’ diagnoses”

I will be honest it ticked me off. After my last post, expressing some things in regards to this it just really irked me. I have more in my other post about idealized love too on this topic. I am not going to go into my full rant, but what I would REALLY like to see is some more Aspergers men share their feelings about this.

How do you feel about your spouse or partner feeling this way?

Have they tried to understand you or have they automatically assumed all of your Asperger traits make you distant, cold, and insensitive? Do they have any idea how you show affection? Are all of the issues perceived through their perceptions? Does ANYONE ever stop and think of the WHY an Autistic person may seem distant, cold, and insensitive other than through their own expectations that they claim are not being met?

Look, I know I may sound like I am taking sides here; maybe I am a little bit.

HOWEVER, I ask you for a moment to consider how difficult it can be to go through an entire life undiagnosed. Can you consider for a moment what it is like to feel so incredibly different and not know why? Think about how much of an Autistic person’s life could have been filled with constant confusion and lack of empathy from others.

Then, as an Autistic you  are continually told how much you lack empathy or emotion.

Think about our world, our world, our minds do not process or think in the same ways and we are bombarded with this world that we live in telling us how wrong we are for being the way we are. We are told how we need to change to make others feel loved. We need to learn how to express emotion, thoughts, and learn to communicate in ways that can feel foreign and unnatural? I am not against compromise, but I wonder … I wonder.  

Sigh … I will stop because I am not sure if I am making any sense. 

Back to my anxiety – I am passionate about understanding relationships. I understand both sides for Autistics and nonautisitics. I do realize the difficultly and pain that others may be feeling, but I felt a mass amount of irritation today about it. I felt my belly on fire and I felt like it was an injustice to portray us in such generalized ways. (Well that is injustice.) My agitation was heightened because of my anxiety. I would not normally linger with the feelings of irritation and annoyance. I can usually see their point, have my reaction, and then, quickly move on with sympathy for all parties. My anxiety kept the negative feelings lingering.

By 3:00 pm, I was feeling fatigued and sick.

My brain was fuzzy, my stomach hurt, and I started to have signs of allergy symptoms. Daniel had his tutor coming so I had to keep my social mask on; it was a social encounter by that point I was not looking forward to. It did help that I understood why I felt the way I did. The tutoring session went well, but my sensory sensitivities heightened causing even more irritation. I was starting to get irritated and hurt by her because she kept staring at my birthmark. I normally, hide it pretty well just so I do not have to deal with that too, but I was too tired today.

This caused me to have another trigger of insecurity.

I have so many traumas wrapped up into my birthmark that if I am vulnerable in any way it can send me into tears if someone stares at it. By 4:15 pm, I was ready for bed. Of course, I could not go to bed. I shook it off reminding myself that I have no idea what she was thinking and WHO CARES anyway! I have three little ones to take care of I do not need to concern myself with things like that. Instead, I read books in the living room to them. Daniel was on the chair with me and Ariel and Joshua played while listening.

After dinner, I had to lay on the couch for a little bit.

Ariel lay with me while the boys played and we watched Seinfeld and then, The Brady Bunch because they had never seen it before. Daniel asked me to turn it off. Lol! He said, “I do not like the sound that the show makes.” I am not sure what that means, but I turned it off. After that, I got up did the dishes and decided to take a shower. I felt much better and realized that I should probably document all of this to help me process.

Who knows maybe someone else knows what I am talking about or can relate!

Writing all of this I understand how one perceived negative comment (and bombarding of unnecessary words and negative tales) could spin me into a tinge of anxiety. I now know what it means when I get that tinge in my heart. Since, I allowed myself to “experience” all of this I think I am better equipped to redirect myself next time.  I also understand that my many social and sensory situations have made me more vulnerable and sensitive. This week is packed. Grandma is supposed to come on Thursday if she feels well (a lingering unknown), I am still waiting for the exact date of the eye exams, and on Friday they are working on the house. I have to think of something to do with the kids away from the house because they will be putting in insulation, it has to be done inside the house. (Oh, and I have an appointment with my therapist on Friday afternoon.) More lingering unknowns … unsettled anxieties.

Knowing is half the battle! :-)  

Some excellent read for the day. (Could[should] bring awareness and perspective.)

There Will Never Be Another You

New Research on Autism and Suicide

Autistic children are 28 times more likely to be suicidal

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