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Anxiety Almost Stopped Me … Almost

Yesterday I ran my first 5k and I admit I am rather proud because I placed 2nd in my age group. I was surprised when people told me, I had no intentions of winning anything — I had a certain time/pace goal, but the thought of placing did not cross my mind. It was a nice surprise. However, as proud as I am of what I accomplished with my body I feel even more sense of pride in that I actually tried it. I was too anxious to sign up for several weeks. I went a few times with intentions of signing up and I even went online to register at least five times; each time I felt panic rise up and I could not do it.

I felt like I was annoying people because I kept asking them if they were going to run.

I kept talking about it because I wanted to try it, but I could not overcome the panicky feelings that would rise within me when I thought about it. I get frustrated with myself when I do this, I try not to, but it is such an aggravating experience for me. I want to do something, but the unknown takes hold of my mind and it becomes consumed with every possible scenario or I see nothing. It feels black, empty, with vapors of fears misting through my thoughts. I am not afraid to fail. It has nothing to with that. In my mind, just attempting something new is a great accomplishment. The time it takes to prep and then, follow through is WINNING! (I feel that with most things, the areas where I struggle with perfectionism is different and they normally have to do with intellect or emotional needs of others , that is a whole other post.)

My anxiety comes from social fears and sensory unexpectedness.

When it is a special interest of mine, I can press through these overwhelming feelings. My desire is so strong for my special interest that I am unstoppable. Yes, I still have to talk myself into moving forward or make myself go places while almost in tears and hyperventilating, but in the end it is something that I care about so much that I can get through it sooner. Something that I am somewhat interested in or intrigued to try, I find my anxiety can talk me out of it quickly. I will feel disappointed, but the amount of energy that I would need to use in order to do it does not seem worth it. I have done this with so many things. The more that I thought about the race the more I felt like this was something that I had to do. I needed to try it because it felt challenging on so many different levels.

I thought about all of the experiences that I had missed out on because of my social anxiety and I did not want this one to be another thing that I did not do.

I found myself openly talking to people at the YMCA about my anxiety. At first, they thought it was about how well I would do in the race. They encouraged me and told me that I would do great which, I will say has been quite a fantastic experience to have so many people be encouraging and build into me. People on my facebook page were encouraging as well. It gave me such a boost of positivity and courage to follow through. I am thankful for everyone who did that for me. I explained to those who did not understand my reasons for being anxious, that my main source of anxiety was due to the fact that I was going to be surrounded by about three hundred people in a situation that I had never been in before. The unknown filled my mind with AAAAAAGGGGGG!!!

It still did not register with some people, but they were kind.

There were others who understood and those who had done it before explained as much to me as possible. They also, gave me helpful tips for running and being in that atmosphere. A couple of my friends from cycle class and boot camp invited me to go with them. This helped a great deal, and they were so supportive — I was really amazed. I have not had many friends in my life, especially, ones who are sympathetic, encouraging, and supportive like this. It made such a difference for me. I could not sleep the night before, keep in mind David’s mom and aunt were coming that afternoon too. It was just another component to my social anxiety, nothing bad, it was that we had not seen her in about six years. That can cause me confusion with social dynamics if I am not around a person for a long period of time. Side note: The visit went great and everyone had a wonderful time. The visit was another reason why I kept teetering on whether I wanted to run or not.

Too many social interactions and new things could spiral me.

However, I decided I was determined to work through this. To help me, I had to force myself to go to the running group that I signed up with to train for the half marathon. I was not going to go because I was consumed with anxiousness, the group is a few hundred people who participate. I had paid for this so it gave me an additional reason to go, and I decided that it would help prepare me for the upcoming group at the 5k. I had a lot of support and many people from the Y that were running too. It was one of the socially “safest” first 5k’s I could do. I was a little bummed that I would not have any family there, but I worked through that because I have grown accustomed to doing things on my own. There was no way that David and the kids could come and my aunt had left for vacation. I was ok with that, BUT my dad surprised me and told me that he was going to drive into town to cheer me on.  I had a moment of panic, mixed feelings, and then I was overcome with good feelings.

It’s how I process, panic at something new or unexpected, then being bombarded with all sorts of thoughts and emotions, finally ending with my settled feelings. :-)

I was happy that he was there it felt really good to have someone there at the finish line. It felt good to have my dad there. :-) On my way home, I thought of what it was like only a few hours before. I was shaking, trying to maintain control of my breathing, working through feelings of frustration with not being able to stop, overcome with panicky feelings about my friends, I had feelings of fear that they would think I was ridiculous or that my anxiety would be the cause of me losing them as friends. I was shaking, and trying to maintain control right until the gun went off for us to start. I did pretty well at being ok in front of everyone else, but on the inside I was freaking out. I knew that I had to find some sort of calm so that I could run and keep control of my breathing.

After I got going, I felt much better.

I am not one who loves running, I did enjoy myself though and the end results definitely made it even more positive. I was running alone for a while and starting lose my zest, but then a couple of ladies from my boot camp caught up with me and three of us practically made the finish line all together. It was a great feeling, they won too in their age group. I am glad that I did it and now I will be more at ease for the 10k that is coming up in several weeks. I just need to do something once and then, I am usually fine after that. I will still have anxiety, but if I have positives to remember I do much better. I felt great accomplishment by following through with it. I was amazed too at how my family gave me so much support. They posted on facebook and texted me how proud they were which, I have not experienced with other things that I have done so I was a little confused, but I got over it. It felt really good to experience and be able to have something to share with so many of them.

I plan on running the half marathon with several of my family members this coming October.

I am looking forward to having a shared experience with them, it’s a good feeling to have a connection in some way. I think this was a another big mind shift for me. This was something that I never thought I would or could do, I did not even know I could run! :-) I overcame a huge feat within myself this weekend, not only with trying something new, but with my relationships. I received a trophy for the race, while that is really exciting because I have never received a trophy except for participation before, I believe I received much more in that I saw things in myself that I have never seen before. I had moments of actually, being able to see how others saw me. I have a difficult time with that and I do have to work through dismissive thoughts that come immediately into my mind, but I have so many positive anchors to hold on to that it makes it somewhat easier.

I am determined to not allow anxiety to take anymore experiences away from me, too much good can come from new experiences.

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Happy Autistic Pride Day!

 

I admit, I am not really in a typative or talkative mood today. I am social’ed out and this week has been rather exhausting; with David being gone it has caused too many ripples in our routine for the kids and me. However, I still felt like sharing in the celebrations of Autistic Pride Day! I decided to share some photos of art, and some of the things that the kids like to do and collect. I take pride in how they express themselves. I enjoy walking into a room and not knowing what drawing I will see, what has been created, what items have been lined up, or what stuffed animals will be occupying our kitchen chairs. 

I am sharing a couple of my recent paintings too.

When I find myself too jumbled with emotions and thoughts, I get in a stuck state. Sometimes it is so intense that I am unable to even write poetry, which is normally my way of expression when I cannot talk or write it out. When I am unable to do those I tend to draw repetitive type of  things, such as infinities linked together or a certain flower shape, swirling lines, all sorts of shapes really. Though Ariel has not been officially diagnosed, as she gets older I see more and more traits to indicate that she too may be an Aspie girl. It is not pressing at this point to get her diagnosed. She takes pride in being herself and embraces her unique ways. She embraces her brothers and likes that we are all so different — we fit very well as spectras being diverse in our own ways on the spectrum. (Not to say that it does not bring about interesting challenges, but all families have them.)  

Anyway, here is us taking pride in being Autistic and embracing our unique selves, hope you enjoy. 

Click on the image to go through slideshow or click [Show picture list] to see each image.

Some of Daniel’s Expressions

Some of Ariel’s expressions, she creates all sorts of image stories that can be found strewn throughout the house. 

Some of Joshua’s Expressions — he has a lot more, but he also has them scattered about the house so it was hard to keep it limited. He LOVES Sonic and has nick-named himself Sonic. 

A couple of my expressions, and a poem that came out as I was waiting for the images to load. :-)  

Proper Pride

hearts too delicate,

fragile in the face of our

world, but resilient -

steadfast, worthy, valued,

in the quest of change -

a path paved by those

who once were silenced; now SHOUT!

~~~

A couple of things that I read/watched today. 

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First Week For Daniel At Summer Enrichment Program

I thought I would give an update for the first week of Daniel’s summer enrichment program, that way he and I could have written memory of it. Keep in mind the week before my mom was in town and we not only socialized much more, but we also did several new things. In the past, for our family trying something new had the potential of taking anywhere from one day to three weeks recovery. A constant flow of socializing caused hours of Daniel being overwhelmed leading into nonstop meltdowns no matter how much he loved it or enjoyed himself. Though I admit it was (and is when it happens) tiring and taxing on me, my concerns for him trumped what I was going through. I will say it over and over again and I do not care how many times I repeat myself, it brings such joy to my heart to see him be able to enjoy himself and be happy before and after these things.

After saying all of that, the first day was intense to say the least.

Intense is the best word I can come up with to describe it because it was not a bad experience, but it was a rough one. Daniel and I have never been away from each other for that long of a period that was not a family member’s home or our own home. I had never left him in the hands of teachers or therapists. Have I been overly protective, yes. I felt it was my responsibility because he was unable to tell me if anything was wrong or had happened to him. However, I also did not have opportunities to do things like this for Daniel either. Had there been options that we could afford or been qualified for I probably would have tried them. (Cautiously and wisely) He has been able to communicate the things that are affecting him or causing him stress so this makes me more comfortable.

I also, trust the staff and the facilities so I feel this is a perfect fit for him to try such a big adventure.

I digress. I have a lot stuck in my mind. We prepared as much as possible for several days; they sent an email with pictures of the room, staff, and teacher. He had already met the teacher so that was a bonus. We discussed that I was leaving him for three hours, but then I would be back. We picked out the snacks he wanted, packed his backpack, and picked out the clothes he wanted to wear. I made sure that his morning went as peacefully as possible without any glitches. He was excited, happy, a bit anxious, but willing to give this whole unknown thing a try. He was still doing well when we got there, but then one of the boys happened to be loud. There were several who used loud vocal stims, which I expected and had already told Daniel about to help prepare him.

However, that being his first experience set the tone for him.

I watched his happy face turn to panic and fear. I did everything I could to help calm him, he wanted to leave. He was begging me to take him home. I couldn’t. I ended up staying in the room, but trying to let them guide him and help him. I knew that he was on the verge of full on meltdown, but I also knew that he had continued to try things and looked interested and curious. He was still watching the other children and I felt that he really wanted to participate. It was the sounds that were too overwhelming. The loud, unexpected sounds sent him into panic, but I listened to my “gut” and decided that it would benefit him to stay. I felt that I was making it worse by being in the room so I told him that I was leaving and walked out. I knew that the environment was a positive one and felt that they knew how to help them. It was hard though.

I heard him crying, and then after a little while he calmed down.

I tried not to look, but I was a mess so I checked on him and he saw me. Urg! He got upset again and calmed down. THEN, I thought I heard him crying and I could not control myself I went to check on him — he saw me and lost it again. I didn’t think he saw me though, but he did. :-( It was one of the hardest things I have had to do. I questioned my decision the entire time. I sat in the hallway almost in tears and panic myself. I fought the urge to bust open the door, swoop him up, and save the day! I wanted to comfort him, tell him that it was ok, and take him home forever. I knew that I could not do that. I knew that Daniel needed this and so did I. He needs to learn from others. He needs to experience independence. He needs to learn how to be with his peers without me around. He needs the experience from other adults who care about him too.

With about a half an hour left the teacher came into the hallway and told me that he needed to use the restroom.

She said, “He gets upset every time he sees you.” She was kind and did not tell me to go — she could have. :-)  I knew that I needed to get out of sight, so I hopped up and ran out the door to my car. I sat in the parking lot for the remainder of the time and just kept hoping that my gut was right and that he was not traumatized or anything. I went to get him, his little brown eyes were puffy, his cheeks were red, but I could tell that he had not been crying for a while. I was so proud of him for sticking in there. He did try some things, which in my book was amazing because I knew how overwhelmed he was. We had gotten a solar-powered owl for him and decided to give it to him when he got home to help establish a positive trigger, just in case. There was a slight moment where he was getting upset again because his solar-powered flower was missing.

Solar-powered owl and me saying, yes, to going to the Dollar Tree helped bring some peace.

I could not say no. I knew how much it took for him to try all of that and to keep going. He worked really hard. I did not care if it felt like a reward or not. He deserved it! When we got outside, my fears and anxieties diminished. He was smiling and happy in an instant. I got him to the car; he took his headphones off and said, “Ok, we can go to the Dollar Tree now.” I was a little taken aback. I asked, “Are you ok Daniel?” He said, “Yes, I was just overloaded in there.” I asked, “Did you like it?” He said, “I don’t know.” I dropped it so he could process. I knew he would talk to me later, but I also knew that he did not say, “I am not going ever again or I do not want to go back.” If he does not like something it is done. There is no going back and he will have nothing to do with it. I let it go until later, when he was in a peaceful and jolly state I asked him about everything and we talked a little more.

He was proud of himself for staying and trying new things.

During our discussion though, I asked him why he had gotten so upset whenever he saw me. He said, “Because I wanted you to come get me. I thought I was going to live there.” Oh, my. I asked him why he thought that I would leave him there to live because I had repeatedly told him that I was coming back at 12 pm. He was not sure, but somehow in the midst of his panic state he had concluded that I was leaving him there to live and he would not be coming back home. Poor guy, that had to feel terrifying! I reassured him that would NOT happen. The next day, I fixed his noise reducers to muffle out even more noise. I went over the schedule; I told him that I would not be staying, but that I would be back at 12 pm. I told him that I would not go into the room with him anymore either.

I asked him what they did and went over that to help him become more familiar with the routine.

I explained different types of stims. He had a lot of questions about the vocal and noise stims so I answered all of his questions and reminded him that he too has some loud vocal and noise stims. He said, “Oh, yeah. I do.” :-) I explained to him that they are doing what he does with his stimming and that helped him to understand. He has not experienced being with Autistic peers, some of them are verbal some are nonverbal in his class. They vary on the spectrum, I am pretty sure they all have some sort of language or communication delay/challenges. I reassured him all day long and the next morning that he was going to do great, have fun, and now that he knew what to expect he could feel more comfortable. He agreed with me. The next day of his class, I took him earlier so he could see the other kids arrive to help him prepare. He sat on my lap and watched them come in.

He was smiling at them and had a genuine enthusiasm to go.

I took Ariel and Joshua with me this time too for additional support and comfort for him. When it was time to go in he got up, said good-bye, and went to class. I had a feeling that he was going to do great and have a wonderful time. I was right. He did fantastic! He still has not decided if he “likes” it or not, but he is willing to go back and seems to be quite happy to be there. He will tell me when he is ready. This was only the first week; I am sure by the end of the eight weeks he will be upset that it is over. I will share more of what he is doing and learning as the weeks go by. This was a lot of emotions and growing for the both of us. I am very happy for him and excited to see how much more he does. I am not sure about this coming week, it could go either way because David is going out of town so my schedule will be off which makes the household routine all off. Plus, daddy being gone is always a change that takes getting used to.

I think it will be ok though, I have a lot of fun things planned — swimming, the splash pad at the Y, parks, training for their marathon, maybe some artsy stuff so I think it will all be ok.

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Summer Adventures

Our summer schedule is full and has several new adventures. The kids are trying new things and I am trying new things. David will be traveling a little more and is working on new projects while continuing his normal work duties. David’s mom is coming to visit in July. I feel good about all of it so far. I am mostly excited, but I am anxious as well. My mom was in town for this past week and it was such a wonderful visit. I am still a little in awe at how incredible it was. She was in good spirits, the kids were, and so was I. Compared to last year’s visit it was (as mom put it) “like night and day.” When I compared our situations from last year to this year I could see all the positive changes that had been made from us and with my mom.

I am in a much better mental and physical state.

The kids are happier and feel better since we moved into this house. Daniel has been able to do more things for longer periods of time and enjoy himself. My mom changed jobs, transferred to a new store, gained a new boss (who she believes is an extroverted Aspie :-)) and she has been able to work through some of her financial burden. (Wish we could get to that point, but I am happy for her. It has been a long struggle and she works hard.) Last year, mom came when the weather was still cold. My mom cannot handle the cold and it determines her mood — she cannot help it. She is miserable in the cold. Our last house was a sensory nightmare and it affected my mom, she could not stay over for very long.

She was in a job that drained her physically, mentally, and emotionally.

All of these things were not a factor this year and Daniel took notice. He feeds off of our emotions. I was still working through my automatic response of trying to manage my mother’s emotions last year. It made me on edge, and anxious. Daniel felt that and responded to the negative emotions. For those who may not know, my mom is Aspergers as well. My mom was in a negative state mainly because she was tired and cold, Daniel responded to that. Although, we had a fairly good visit compared to this year, it was slightly alright. :-)  Daniel told me last night, “I loved Grammy the same as you the last time she was here, but now I love her more.” (That is a good thing.) He enjoyed his time with her, so did Ariel and Joshua. They played, told stories, watched TV, we celebrated Joshua’s birthday early so he could have a party with Grammy, we went out to eat at a restaurant AFTER music therapy, and we went to the museum.

The science, art, history museum!

That would not have been possible a year ago, AND we forgot Daniel’s sound reducers. We had a moment of not knowing if we would need to leave, but he decided to stay and we had a fabulous time. Even with the 35 or more little girls and boys outside hooting and hollering, it was some sort of day camp. Each social experience did take transitioning and mind calming activities. Such as when we got to the restaurant Daniel needed some downtime, he became fixated on my mom’s hair because she changed it. He had never seen it the way she styled it and he did not like it. He could not let it go and was almost in tears about it. He needed to process all the things that he did in music therapy and he needed to process the change of my mom’s hair style.

I took him for a walk outside and we observed all the grand things in nature and air conditioners.

He was fine after that, all was good and he enjoyed himself. He wanted to go — he loves going out to eat. Eating out has not been something that our family has been able to do much. I am happy for him because he had such a wonderful time. He was emotional the day that she was supposed to leave and it took a lot to comfort him, but only an hour later I got a call; mom’s flight was cancelled and she was going to stay an extra day. I am not sure what this did for Daniel, but he was able to find some sort of closure. He was fine with her leaving yesterday and has not been in an emotional response state leading to meltdowns as in the past, or even on Thursday when she was supposed to leave. It is amazing how when we find our sense of closure we can process and move on so well.

So that was our Grammy visit adventure, everyone was happy and had a great time.

Onto our other adventures, beginning next Tuesday (for 8 weeks) Daniel will start a summer enrichment program at his music therapy. When I say music therapy I am not referring to just playing instruments or using music as fun playtime type of thing. They are using neurologic music therapy and Daniel has shown some significant changes in his communication, expression, and abilities to self-sooth. It has been rapid and at times, I have been moved to tears at how much joy he has been able to experience because of the changes. (What’s the difference between NMT and regular music therapy?) Several things that they will be working on are reading and math general education, yoga/body work, social groups, supported communication training/practice, and daily neurologic music therapy. They plan on doing parent education and training as well. He will be going from 9 am to 12 pm and this is the first time that he will be away from me for this amount of time outside of the home or with a family member.

On the first day, I will stay around for awhile and see how he does. 

He going to be in a group with Autistic peers and this will be a new experience for him too. I think this is going to be good for both of us. I believe this is going to provide him with a different sense of independence. The additional staff seems enthusiastic and good. I met the teacher and she is one of those people that in her presence she seems to pour out bubbles of happy. I like her and think she will be great for the kids. I am looking forward to this new adventure for Daniel and myself, but I will say I am anxious. I plan on spending that allotted time with Ariel and Joshua, they are happy to have some mommy time. I know that this is a good thing for all of us, but Daniel has been so dependent upon me that it is hard to let go. So many things flash through my head of what I do to ensure his days go well or ensure that he has everything that he needs. What about the things he needs assistance with that I for the most part have done? Can they handle it!? Of course, they can but I am his mom, so I worry.

I have signed up Ariel and Joshua for a week long summer camp at the children’s museum. 

I am trying to fight back my panic attacks! I am kind of kidding. ;-) This will be the first time that they will be away from me all day. The program runs from 9 am to 4 pm. I know that it will be good for them and that they are going to love it. I am just a little anxious because it is farther away, not much but enough for it to take longer than 10 minutes to get to them if something were to happen. I know, I know! Helicopter mom much? It is not that I have not wanted to do things like this for them it is that we have not had the funds and/or their own anxiety challenges did not make it possible. Joshua’s sensory and social challenges can become overwhelming for him as well. He responds differently and it can be confusing to people who are not familiar with him. So we will all grow a little more independent this summer — it is a very good thing. I have other things in the works, swimming, field trips; we are training for the kid’s half marathon, and whatever other activities I can get them into.

As for me, I am focusing on ideas and ways to help the community with the Autism Caregivers Support group.

I had my first meeting last week and I loved it. I created a closed facebook group so that we can stay connected, share resources, experiences, and get to know one another. This week has been too busy so I have not had time to put more into it. I am helping in any way I can with the school at the music therapy and sharing as much as possible to help. I am studying for my group fitness certification and … I decided to train for the adult half marathon. WHAT? Yes, I have caught the desire to run. Yesterday, I ran almost four miles which is huge for me. I have been encouraged by so many people and several of my friends from the Y are doing it. They inspired me. I realized that one of the reasons why I was not running was because I had “labeled” myself as not being a runner.

What that means is that at some point, I made a rule in my head that I could not run because I did not fit MY criteria for who a runner was supposed to be.

I did that with writing, painting, speaking about Autism, education, all sorts of things. Every time I realize that I have done that to myself I have the urge to try. I do not need to be the best; I just want to show myself that I can. I am a natural runner it is in my DNA. Practically, my entire dad’s side of the family runs and they are good runners. I want to do this for myself, but I also want to motivate my kids because they are natural runners too. It has been a positive experience taking them to train for their marathon. They will only run the last mile on the day that they have their marathon. The rest of the miles will be recorded until the day of the race. I have made this much longer than expected (and seemed to use the word “good” about a zillion times.) BIG SURPRISE! I think that is most of our summer adventures. This summer has a lot going on, but I think the experiences are going to stretch us and have positive outcomes overall.

What does your summer look like??? 

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IEP: Components to Consider When Seeking Accommodations III

Continued from: IEP: Components to Consider When Seeking Accommodations II

There seems to be much focus on controlling behaviors instead of actual academic goals or the emphasis is placed upon trying to get the child to fit into an environment. The environment itself could actually be causing them to manifest “behaviors” that the teachers/parents/IEP team want to stop. For Autistics and for some of those who have learning challenges, maybe Autistic with learning challenges, and/or additional components such as ADHD, anxiety disorder, depression, sensory processing movement is essential to being able to learn, process, and retain. Movement helps the mood, it helps the brain make connections, stimming releases stress and anxieties when forced to control our movements or limit them it can limit our abilities. This was an interesting read AUTISM IS NOT COGNITIVE… IT’S A MOVEMENT DISORDER!

Not only is there the emotional aspect of wanting to please and not being able to stop ourselves, but the words spoken or actions taken can be traumatic.

It can make us feel wrong or bad about ourselves. It can be confusing. Why is it so wrong to hand flap, jump up and down, clap, hum, or twirl? Granted there are some stims that are harmful and of course they need to be considered differently, but the body’s response or the stim is a form of communication. We are telling you something. I will use myself as an example, if I am in an emotional discussion and the person will not stop talking, I shutdown. If I manage to voice that I need them to stop talking and they do not I feel like my insides are bursting apart. I am jumbled, confused, overwhelmed and literally feel the words on my body and go through my body. I start to panic and my uncontrollable form of outward expression is to dig my nails into my flesh.

I cannot talk, I can only claw, dig, scratch, pinch, and pull at my flesh.

I don’t want to, I try to stop but I cannot. I have left some horrible marks on me and I have caused myself to bleed on numerous occasions. I have managed to stop this for the most part and there was a long period of time when I did not do it, but I had not been in those types of circumstances — a few years ago I was and like I had not stopped at all I began doing it again. I felt unheard, swallowed by confusing words and emotions, I was unable to communicate and when I did it was mixed up and misunderstood. I did these things in school, but I had learned how to hide them. Social confusion can play a role in the responses (or if you are accustomed to the word behaviors) as well. They can be a factor for a nonverbal child, but they have no way of communicating it to you.

I have discovered, since Daniel has become more verbal many social situations that caused him to become aggressive.

I understand that feeling; I too feel a certain type of anger when I cannot figure out what is happening. It is not directed toward a person, it is a frustrated feeling that leads to anger. Confusion manifests and it creates a state of fear, to protect myself my mind goes into an anger type of feeling. I want it all to make sense, but it does not. It is frightening. I have described it as feeling like my brain is thinking and going along just fine then, something happens and it gets stuck. A pathway just stops. I can feel something, like energy or something in my brain – stuck. I try to force it to move to get to the end of the path to make it understand, but all I feel is some sort of blockade and I see black. When my mind is operating in a way that is my “normal” all of the pathways move with ease and seems to go very fast – zoom, zoom, zoom!

Speeding along, making connections, they are zipping by like rapid streams of colors in blues, yellows, and sparks of white.

These get hindered with social confusion, sensory processing challenges, my learning challenges, anxieties, depression, PTSD (C-PTSD) and a factor that I now believe to enhance much of this my synesthesia. If you are not familiar with synethesia it may be something to consider. Many Autistics have synethesia as well; it affects our sensory processing and can affect how we feel emotions causing them to be incredibly intense. (Hearing Colors, Seeing Sounds: Synesthesia - quick video, Synesthesia - wiki) Things to investigate are the different sensory processing challenges. I share several in the post; a great reference to start with could be this Aspergers Checklist: Sensory Sensitivities. Some days social confusion/stress and/or routine change will enhance sensory issues and vice versa. Every day is a struggle with dysgraphia here, but when the kids are learning something that requires a lot of processing handwriting will go from not being pleasant to screaming and tears after one word.

We do not attempt it on those days.

Another example would be thunderstorms, if there are storms school is a heightened anxiety for Daniel. (We do have weather conditions written into his IEP.) The anxiety from anticipating thunder and lightning causes him to be under a large amount of stress. He cannot take a test that day and there is no reading. In contrast, when it is sunny and perfect outside he is able to fly through his school work, some days he can read out loud, and can attempt to write. Daniel and Joshua both have visual processing disorder. (Me too) There are some days when they are so affected that they hear sounds muffled, jumbled unclear, and they can seem like they are purposely not listening. I have had to explain this to their teachers and therapists because they will press them or not understand why they are responding in certain ways. Joshua will shut down and start crying, his mind feels confused and flustered; more words or repeatedly requesting him to speak or follow the instructions will lead him into a meltdown. Daniel will ask, “What did you say?” Over and over again. He has heard the words, but they make no sense.

Here are several resources to help identify visual/auditory processing disorder.

Visual and auditory processing are the processes of recognizing and interpreting information taken in through the senses of sight and sound. The terms, “visual and auditory processing” and “visual and auditory perception”, are often used interchangeably. Although there are many types of perception, the two most common areas of difficulty involved with a learning disability are visual and auditory perception. – Visual and Auditory Processing Disorders

I found several things on this site useful spdstar.org. They gave this break down of the sensory system.

DESCRIPTION OF THE EIGHT SENSORY SYSTEMS
The five basic sensory systems:

The three sensory systems Ayres focused on in describing sensory integration dysfunction:

The most recently discussed set of sensations related to internal organs

Our executive functioning can be easily categorized into being unorganized, purposely not completing tasks, or not listening.

Executive Functioning Disorder 

Dyscalculia  

(Click on image to enlarge)

download (4)

Dyspraxia 

(Click on image to enlarge)

http://www.dyspraxicfantastic.com/327/

http://www.dyspraxicfantastic.com/327/

 

Dyslexia

(Click images to enlarge)

 

http://helpingchildrenwithdyslexia.com/blog/

http://helpingchildrenwithdyslexia.com/blog/

http://www.tes.co.uk/teaching-resource/Dyslexia-Difficulties-Mind-Map-6328548/

http://www.tes.co.uk/teaching-resource/Dyslexia-Difficulties-Mind-Map-6328548/

I believe that nonverbal learning disorders are not considered nearly enough.

  • Nonverbal Learning Disorder (NLD), also called Nonverbal Learning Disability, is a developmental disability which all too often goes undiagnosed. Individuals with this potentially debilitating disorder generally suffer in silence. ~ NLD on the Web!

This is not exhaustive, but I tried to give more information to help bring to light the many challenges a child who needs an IEP can have.

Knowing this information can help you know what to look for and what to ask for in the meetings. If at all possible, ask your child about their experiences. Try to learn through their communication what their needs are. Once you realize all of the factors that are or can be contributing to making it more difficult for your child the more equipped you are and the more understanding you can become toward their needs. Instead of thinking of everything as a behavioral issue reconsider the responses of the child. (Challenging behaviour in children with an ASD) The world can be very confusing and lonely to those who think and operate differently. It is a matter of breaking each one down for your child that applies and write out their challenges and strengths in the areas that apply.

Learn as much as you can, I suggest trying to get out of the mindset of thinking that it is all autism related and that the need is to fix or stop behaviors.

Though we are greatly enhanced or hindered in areas because we are Autistic, we also have comorbid coexisting with our ASD diagnosis, (COMORBID DISORDERS WITH AUTISM & ASPERGERS) that can range from social anxiety to dyslexia. Our kids should be given the respect of being thought of as curious, thought-provoking learners. There could be other reasons for their responses, they could be bored. That may be a hard to grasp sometimes when you can only “read” their outward expressions which carry very different meanings to you as to them, I too misunderstand my children’s expressions, but I try to keep on learning. I share more sites below that should help you obtain information to know what is available in your state and maybe accommodations you or the IEP team may not have considered. The first one is specific to ADHD, but the accommodations listed can make the learning environment for special needs and learning challenges much better as well.

I had to stop because it was getting too long and I think I covered a good amount in these posts – I do hope they are helpful. AND thank you for reading! Feel free to leave a comment, insights, whatever your experiences that are beneficial as well. :-)

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IEP: Components to Consider When Seeking Accommodations II

Continued  from: IEP: Components to Consider When Seeking Accommodations

To give clarity about these posts, I am giving suggestions, insights, and trying to bring some awareness that the needs of our children and their goals should be based upon their specific strengths and challenges. This is supposed to be the purpose of the Individualized Education Plan (IEP), but I have observed from reading and interacting with parents that many times terms are blanketed into one thing such as working on motor skills, but no one has looked into dysgraphia, in some cases they have not even heard of it. If there are issues with following instructions, unable to follow instructions, disorganized, repeatedly looks as if they are listening, but do the opposite or their attempts are different from what you told them some claim these to be behavioral problems.

Or automatically ADHD, there could be other things to consider — dyslexia, executive functioning dysfunction, or even taking time to observe/ask about sensory sensitivities.

To take it one step further, ask or observe if there are any social issues that may be happening. From my personal experience, I have had moments when my mind gets so confused by a social interaction that I cannot focus or discern what I am being told or asked. This happened to me as a child and many times I was able to recover quickly when I was (am) able to understand the situation. Of course, this is not going to be all the time and every situation is different, but by adding accommodations/goals to an IEP for social circumstances could benefit a child and teachers greatly. If they struggle with math has dyscalula been considered? When they become overwhelmed with sensory issues have the specific ones been broken down and was accommodations/goals written for them. I go through those and several others in my next post.

This sounds like a lot and it is, but consider what the child/person is going through. 

We have to navigate through a world that most people around us can filter through much easier and comprehend their surroundings much quicker. This is not quick and easy for anyone and I loved this comment that Shelien left on my last post.

When I first began teaching I found it very overwhelming when I’d read an IEP with 15+ adaptations. What helped me was to have the parent/child identify the most important 2-3 for me to start with. Then, once I’d incorporated those it got easier to add more. Testing accommodations were often a priority to start with, and then we could work “backwards” to ensure student got practice using the accommodations on a daily basis. And, once you’ve gotten familiar with each accommodation it becomes a lot easier the next time round!

It is a lot to consider for teachers as well, which is why the IEP should be a team effort with everyone’s input. For the teacher meeting your child for the first time or working with an IEP at first, maybe limiting the adaptations to focus on the most crucial that will make the most impact for the transition. When it comes to an IEP it can become systematic causing the identity of the child to be lost and wrapped up into goals, accommodations, frustrations, and yes, even intense emotions — if you have been doing them for a long time, or feel defeated in fighting for your child’s needs or even being a teacher feeling your own set of frustrations possibly this will give some reviving thoughts. I don’t know, I am just sharing my thoughts and hope that they are helpful in some way. Before I used virtual school, I home schooled on my own. I now use Connections Academy. I am not sure how they are for each state, but for us they have proven to be exceptional thus far. When I was homeschooling on my own, I knew at some point I may need to enroll Daniel into a charter school, public school, or some sort of alternative school.

In order to help me understand somewhat the process of an Individualized Education Plan I created my own using information that I found online that explained them.

I did find these for those who are homeschooling or considering it. HOW TO WRITE THE SEP
Step by StepHomeschooling Your Struggling LearnerQuestions and Answers for Parents of Special Needs Children I wanted to observe Daniel to learn his needs, ways to use his strengths, document his challenges, and create goals. Of course, I accommodated him, I do every day that is part of our daily lives as special needs parents, but doing this process surprisingly helped me. Not only with understanding myself much more and making sense of my school years, but it gave me more confidence to know Daniel’s and it helped equip me to know what to ask for when the time came to create an IEP through the virtual school.

Since I had never gone through the process with an actual school I was concerned whether or not I understood or had enough knowledge.

I always do that though, hence, why I research something until I feel that I have enough information – that can take hours, months, even years (decades!) depending on the topic. I was open to learning more from the process and wanted to learn as much as possible through it. I did learn a lot from it, from the teachers and the therapists too. I am still learning, love that! From the beginning with homeschooling Joshua through kindergarten I knew that he was struggling in his own ways. I made my concerns known with his first grade teacher after several weeks into it. I felt that my requests were unheard and my concerns were invalidated by his teacher. She assumed that by repetition and constant practice that he would improve. I tried those things and it turned into a nightmare for him and it was tough on the both of us.

I did my research and found ways to help him on my own.

I knew that he showed many signs of being dyslexic, as well as dysgraphia, and Aspergers. I also, I knew that he would need additional help. I told her my concerns and still my concerns went unheard and she seemed dismissive. I mentioned my concerns to Daniel’s special needs teacher and thankfully she listened. At the beginning of this year, we went through the process for Joshua obtaining an IEP that has helped him so much this year. Both boys have had an outstanding year. However, I was specific and detailed in my requests and in explaining what their challenges and strengths were. This has taken time, but well worth it. This brings me to my next point, you know your child(ren). You have the ability to share with their educators/therapists their needs, however, you may be in the same position that I was in for a while which is that I could explain responses, stims, behaviors, triggers, but I did not know why they were happening or what to call them.

Because of my limited knowledge, many of the things I observed I considered behavioral until I started to break down and journal my observations. 

This does not have to be long and detailed. You can get a small calendar or a composition book and date the pages. Any time a specific response happens, when you get a moment after the fact, jot down a quick note. Anything you observed, remember it does not need to be exact details, but just those things that pop out to you. Food, smells, people, new situations, specific homework, the mention of homework, the act of writing, thinking about a question, sights, sounds, anything. You can even make it as simple as one word as long as it is something that can help you and possibly detect a pattern. This information can lead to deciphering what is happening and why it is happening. It can give the information you need to go into the IEP’s feeling that you are confident in what to ask for and working with the IEP team for your child.

For me, I was unsettled with generalized definitions.

There are many times with Daniel that there can be several challenges overlapping and triggering each other, it is difficult to distinguish between them. Sometimes the accommodations can parallel in helps so you are not exactly sure which one the accommodation is helping, this can also trigger hindrances when they work against each other.  However, once I understood Daniel’s comorbid challenges and discovered his learning challenges I was able to find words, definitions, traits and symptoms to help me understand his responses and see how I was setting off his triggers at times. (It is not all Autism and behavioral problems.) It gave me more insight into his strengths as well and ideas on how to use them to help him. Gaining this information helped me to explain to his teachers and therapists how to work with him. It helped me gain knowledge in distinguishing when Daniel is having physical problems causing him to be upset or if it is the actual tasks, directions, situation.

Some days I still cannot tell, especially, when he is unable to communicate. BUT I do know that the majority of the time it is not behavioral. 

It is challenging to distinguish each day; I am not going to say that it is not. We have some seriously challenging days. Daniel can have different challenges or strengths on any given day, but it has become a little easier to know when to try to motivate him to do more and when to let it go. His sensory struggles are not always consistent; the only one that is the same each day is sound. He is highly sensitive to sound and if one slight noise affects him the rest of his day is a whirlwind of triggers that set off different sensory, anxiety, specific need for routines that he has transitioned from, and/or elimination of certain foods, again. It can be a gamut of things that I try to help him with. I am not sure if this is common for other Autistic children, but there are probably a number of you who can relate in some way.

Joshua and Ariel are fairly consistent. 

Anything that changes is usually triggered by some sort of social dynamic, but there are days when the boys trigger each other and it takes time to bring balance. These types of things, I can somewhat control in our learning environment. I can determine how much and what type of schoolwork they do. If you do not home school, how do you get that too for your child? With Daniel’s therapists and when he needs to speak with his teachers I email them ahead of time and tell them about his day if need be. If there is a thunderstorm I tell them because they make him in a frightened/anxious state. If he was frustrated about anything and could get easily upset I tell them. I do not expect them to stop what they are doing, but it gives them an idea of how he is feeling and lets them know not to push too hard or do things that require too much processing. I am not sure if schools do this or not, but if it were possible to make a quick reference of how the morning before school went, any heightened sensory issues from the morning, or giving a quick note if they did not sleep well the night before etc … could be helpful to both the teacher and the child.

Ask the child as much as possible; observe their progression and feelings about what they are doing. 

For instance, when Daniel was nonverbal traditional PECS did not work for Daniel. He did not get it or like it, but when I changed the images to “real life” images and sang sentences, questions, and answers in tunes that he was familiar with like “Twinkle, Twinkle Little Star” Daniel was more responsive and interactive. His communication was not verbal, but it was musical. If you know these things about your child communicate it to the team and see what can be done. Come up with specific goals, if you were their teacher what would you want most for them? It is going to look different for each child and each age, developmental delay, language delays, and different forms of communication are to be considered there is no way for me to give exact goals or accommodations ideas. This is for the parents and the IEP team to decide. I would suggest implementing a plan on learning and seeking their way of communication along with teaching.

At home, I am to control the sensory environment and make it as accommodating as possible in many cases that cannot happen in a public school.

My kids walk around, take breaks, do school on the floor, sitting on exercise balls, holding hand weights, are aloud to talk, and engage in a lot of movement while doing school. This has proven to help them very much, but it is not realistic in a public school setting. So what can you do? My suggestion would be to think about when your child is most relaxed, at ease, and seems to feel happiest/safest, share that with the IEP team and see what can be done. Outside of the IEP, consider what you can do to make them more comfortable before going to school. On particularly, challenging mornings will comfortable clothes or their favorite clothes make a difference? I know it may sound silly, but when Daniel is hypersensitive and we need to go places or try new things I put him in green colored shirts or shorts. Green is his favorite color and automatically puts him at ease, he may still be hypersensitive and could very well have a meltdown, but he recovers sooner and feels safe. Are there any toys, items, some kind of object that will bring them peace throughout the day? Can that be allowed to stay with them?

This may sound a little off, but for me one of my stims that I had all through school and still have is chewing gum.

I had gum and do have gum in my mouth practically all the time. I used to sleep with it! Not suggested. I learned to hide my gum because my teachers would not allow it and when they made me throw it away I would spiral and become disruptive no matter how much effort I put in trying to not to. I know that you cannot get exactly everything, but if worded correctly and placed in the IEP there is the possibility of getting fairly close. I cringe at even suggesting that you write anymore things down, but we all have mounds upon mounds of paper work that we have filled out for our kids. Binders full. We have answered so many questions until we cannot think anymore. Many of us can write down virtually every single thing at this point blindfolded. (Some of you may be just starting out on this journey, try not to get overwhelmed. Take breaks and focus on what you can, reach out to trusted people or even to those like me who are blogging.)

Unfortunately, what can happen is that we can become disconnected from it.

It is like when we become overexposed to something we can no longer have a response or are able to have clear thinking about it. It is exhausting going through it and if you have been going through it year after year even if things have gone well it can become like a task to check off a list. If it is a negative it can be a source of great stress, anxiety, anger, and frustration. Maybe stepping away, or finding someone with a different perspective can help you see things that you can no longer see would be helpful. After that, maybe you can go back and consider things that suddenly pop into mind that could be a trait or symptom of something that you have not considered. This does not have to be taxing or stressful, go with what you intuitively know about your child and with what you have observed. You can do this and I am most certain that it will build your confidence in knowing that you do know your child.

With everything that you see as a challenge, next to it write out strength about them. 

Remind yourself of the qualities that you love the most about your child(ren). Speaking from my experience, be ready and willing to accept that you may have misread, misunderstood, did the absolutely wrong thing at some point, and that you may need to change your perspective in what your child needs and how they need it. It’s ok, accept, change it, and move on. Empower yourself by wanting to learn new things and by looking at whatever the special need and/or learning challenge(s) there may be in a new way, step back, and try to think differently. Challenge yourself and your paradigms, think of any negative associations and try to work through them — face them. All of this is a journey that is not only about your child’s educational needs, but their emotional needs and your relationship. What they receive now and how they are treated by you, their teachers, and through the IEP process will impact how they feel about themselves and who they are for the rest of their life — yes, it is that important.

How they are perceived and treated by the adults in their life can set the tone for how they are treated by their peers. 

Next post: IEP: Components to Consider When Seeking Accommodations III (Breakdown of sensory processing, learning challenges, behavioral considerations etc …)

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The Relational Loop – Panic Trigger

I was doing fairly well last week, I had a lot going on so I did not have much time to consider the other things that were silently lingering in the back of mind. There was another silent, but loud at moments, thing that was going off in the underlying of my mind. It was the thought, How many times do I have to loop about this? It has been since childhood! Of course, it ruminated for a little while and the more it trickled its voice into my head the more that the internalized triggers and outward triggers started to explode bombs through my amygdala. The additional information from emotions, sensory, and environmental change were also at play. We have had terrible storms come through, but it was beautiful and warm for several days as well. I love being outside in the warmth, when it is nice outside that is where you will find me.

However, when the weather suddenly changes, pressures get all out of sorts, the temperature drops my mood goes with it.

(Daniel gets affected by weather changes too and his anxieties rise.) Even during some of my most anxiety ridden or challenging depressive times, I would find some hope and peace in the great outdoors, I love the sun. Weather changes make a huge impact on me. This year has been a mess of hot and cold and unpredictable weather patterns which, is contributing to my anxiety. I am also, “silently” processing in certain parts of my mind the fact that I finally openly shared on my personal facebook page with family and older friends that I am diagnosed Aspergers. I went further and emailed my dad as well. Those alone are lingering anxiety webs that are attached to many triggers no matter if the outcomes were to be positive, negative, or neutral – there is no way around me going through anxiety with that. Overall doing that has been good for me and given me a new confidence.

 I can tell you all of this.

I can logically and rationally explain to you that it was all contributing to my panic attacks and sudden bursts of hyperventilation almost complete sobbing moments. There was nothing I could do except remind myself that I was in an anxious state. I have written about my anxious states before, but I am not sure I have explained this particular one. I probably have when I am in that state or recovering from it my memory is lacking on those particular things, but I can remember in great detail a conversation David and I had 10 years ago! I have different ones, some have to do with my inability to get things done. Sometimes I have separation anxiety even though I do not necessarily want to talk or be around people I still need them here with me. I will get anxious if David has too many meetings. It is mostly due to routine change. When I feel things are out of order, my house, our school schedule, my work out schedule, my shopping schedule, those types of things.

My anxiety can manifest in different forms and is triggered from specific situations or past traumas.

This one I am referring to is my relational anxiety loop, however, it can parallel my other loops — such as what I call my executive functioning chaos loop. I go through cycles of being incredibly organized, able to multitask, and complete a ton of things. Then, I spiral and seem to lose any and every executive functioning skill I have. My laundry piles up, the completed schoolwork sits in piles needing me to file, I forget scheduled meetings no matter how many times I look at my calendar, I lose track of time, the house is overflowing with toys everywhere, I cannot think of things to make for dinner, you name it my mind is disheveled. This chaos for me can enhance my relational anxiety loop and vice versa. When I am triggered into a relational anxiety loop any social skills that I have learned are basically gone.

This makes no sense to people because one day I am able to talk and seem to “fit in” or at least I am more at ease.

On these days, I can go into a protection mode that I adopted as a coping skill at some point in my life, which is to point out all of my “weirdness” and whatever is in my mind comes flying out causing even more anxiety and creating more loops. I have been trying to work on this, but it takes time to change old habits. I know that Mother’s Day, triggered me in many ways. I can prepare for some of my known triggers, but others I seem to set off on my own without realizing it until after the fact or they leap their attack and blast my mind into confusion. I sit in shock wondering where that came from and what the heck it is. They are invisible attacks without clarity. They take time to dismantle and are normally linked to an entire chain of other triggers. My mind goes into detective mode and I pull a Sherlock on my responses, behaviors, emotions, thoughts, and sudden new or revisited special interests.

I pay attention to the music that I am drawn to, the poems that pour through my fingers and the images that my mind finds comfort in.

They all lead the way to some reason for the sudden burst of anxiety bombs and PTSD symptoms that manifest, that many times leads to depressive thoughts, but even after all of that there is still a vortex that spins with a constant unknown. It is the allusive anxiety entity with no name, or pulling from a biblical reference, Legion because there are many. (Not demons, just many anxieties traipsing around in my mind.) I tell you all of this, I can write everything out in great detail and explanation, but it is still there. I did well this time around with a few hard core moments. When panic strikes me it is different than anxiety. My anxiety started to stir, fester, and by Sunday I was fighting tears all day long. During the bouts of anxiety the panics would burst through. They come on fast, hard, and feel like they will never end. I have learned that if I feed my panic I make it worse and it causes even more tightening in my throat and chest, dizziness, fainting feelings, and nausea. (among these other symptoms link here, you can image how terrifying it used to be to have this happen and not be aware that panic attacks existed.)

The after affects are far worse too, such as my depressive thoughts, negative thinking, irrational thoughts, and emotional/physical fatigue.

I embraced the panic feelings and they were fairly short. I have not had panic attacks as bad as this in a long time. I am so good at hiding them and my anxiety, I trained myself to internalize and fake my way through until I got (get) home or in my private space, from being in school, around family, friends, and work. Sometimes though, I am so depleted that I cannot and they manifest physically. After the weekend, I was an internal mess filled with social confusion, fear, the desire to lock myself up into a room and never speak to another person again. I was overcome with not knowing who liked me, if I had said the wrong things, wondering if my actions and words had been wrong, questioning everything about myself. There are times when I do need to step away socially.

I need that break in order to find my balance.

There are other times when I need to push myself to continue to be social so I do not cause myself to wither in anxious thoughts and isolation. I started telling myself maybe I should stay home from the Y and not interact with anyone. I knew this was not the best for me, but that has taken time and I admit it takes a lot of effort to walk out the door when I am consumed with anxiety and the threat of panic at any moment. I do not want to break down in public! I felt as if I was overcoming some major fears this weekend and that it was important that I was around people who have been positive influences. Many of them have been at the Y. The best part is that I do not have to socialize too much with conversation. We are there to work out so I could smile, laugh, sing music, and be physically active all of the things that my brain needed. I did struggle.

I had panic attacks all day on Monday from the simplest of things such as when I “liked” something or commented on face book.

I had a panic attack after I was finished talking to the boys OT, I still do not know why. I had a panic attack about whether or not I said something that was ALL about me concerned that I was not being empathetic, but only talking about myself. I was hypersensitive about being selfish, that trigger was one trigger that manifested from childhood related to Mother’s Day. I could not tell, my mind could not perceive if what I was saying was focused on me or not. When I am trying to show empathy and support I tend to use personal examples, but when I am full of anxiety I am unable to interpret my words and other people’s words very well. My mind races, it scans over everything I did and said for the day and I can sink into depression. I get worried that I am not being sympathetic enough or that I have hurt someone’s feelings. I made a comment in the morning during my TRX session saying that I was not going to buy a tan.

I meant no harm, I literally meant that I was not going to pay to go to a tanning bed.

Everyone else knew that I did not mean anything by it; as a matter of fact most people just let it go. Not me. I thought of the people who may have gone tanning, I thought of my aunt who was there and goes tanning and I felt awful wondering if she took any offense. I logically knew that she did not. I knew that she probably did not think twice about it, however, all day the scene continued to play through my thoughts and I felt bad. I felt so bad that when I saw her again later at the cycle session I told her so that I would stop fixating on it. She confirmed what my logical thoughts already knew, she did not even think about it. All day I was hypersensitive to what I said and what I wrote. I felt fear and panic race through my body. This panic mode also makes me feel like my heart is broken.

It is that feeling when you feel crushed emotionally and you have physical pain, it is like that constantly.

I feel sharp stabs in my heart area when I read people’s words or they say something I cannot understand. When I am in this heightened state social confusion does that to me. Anxiety spawned by social confusion does that to me. Panic attacks triggered by this do that to me too. After all this time, I have gained much understanding and new ways to cope, but it still happens. I continue to find myself struck with panic over no “real” threat. Through the years for me social confusion, misunderstandings, misinterpretations, inability to understand my social environment has felt like “life threatening” situations. It attacks the very core of me, my identity, and all the things about me and when triggered my flight response manifests with intensity. However, when I have been in situations where my physical being was in jeopardy my fight response came full force, but it had to be a threat of physical violence if it was emotional or in a sexual context (which my mind has categorized as social confusion) I sank into the depths of my internal world taking flight to my place of escape in alone solace.

This time around with this loop I did find it pass much sooner.

My mind was able to find more moments of peace and rational thinking. I refused to let negative thinking overcome me by trying to remember all of the positive social interactions and relationships that I have now. It did help, it was not as painful, the depression has not become all-consuming and I have found that I feel a little bit stronger. I am not sure this will ever go away. I have written so many things about anxiety. As I sat down to write this I wondered if it was pointless, are people tired of hearing about my constant social confusion and anxiety? Then, I thought about all of the people who continue to write about their situations and how much it helps me so here is the post. Now that I feel more balanced I hope to get on with that IEP post I have been working on! Thanks for reading folks it means a lot to know there are people out there.

Related posts: 

 

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What Do I Want?

This post is a trail of collaborated thoughts spawned from various things I read and personal interactions recently. My mind has meandered into the question “What do I want?” Since I was a child there has been a longing, some sort of gaping hole that I felt in the metaphorical place that people claim certain feelings lurk within our bosom. My heart pounds rapidly, deeply, the thumping of a drum that continues to be fluid except for that one off beat skip, a silence then, an echo back to the proper rhythm where I feel content. I do not recall a time in which the hollowness was not there. I cannot remember a time that I did not feel the brum, brum, brum, PANG, brum. What is that emptiness that cannot be fulfilled? I have tried so many things to sew up that painful lesion.

Many addictive band aids of all sorts, religious type glue, and even attempting to tear it wide open.

My hidden cavern tucked away — a vacancy that gives the impression that I am the only one who feels this. That I am the only one who knows what it feels like to walk in the trenches of a wasteland. I hide it well behind my eyes and my smiles. It is covered up with my laughs and silliness. But it is always there. The smiles, laughs, and silliness can be real, but the chasm is still there. Many times I am perfectly fine; I have made friends with the hollowed portions of me. We are good. I am not afraid of it. I find comfort in my favorite poets during these times. I recite Edgar Allen Poe’s Alone with a glimmer and a spark. Sometimes it feels black and void, but I am not afraid of darkness … there is not a lot of things that I am afraid of. If I were to narrow it down my biggest fear is rejection and being invisible, I have mentioned that before.

I think my wounded hole manifests its existence more so when I am anticipating rejection or confused by social situations.

I find it spring its prickly, pointy, stabbing attack on me with shocks of pain and I am at a loss for the exact reason why. There are usually many and it takes time to process. I have felt it clawing at me for weeks and I have done all the things that I have done in the past to sooth it’s torturous gnaw — to no avail. So I asked, what do you want? I seemed to get caught up in a time warp this morning, I went to put laundry away and a bag of pictures of me and my childhood called my name. I picked up the bag with the name Angel written on it. There was a bag of pictures that my mom collected and stored, of me. My entire childhood with a few teenage life in a gallon size zip lock bag — a gallon sized! My childhood fading into orange, ME; what little connection to the face that is my own slowly fading. The memories trapped inside my head have not grown a goldenish yellow with reds and light greens; they are still there lingering about and somehow confirm the familiar face and body I see in the images.

My happy faces, my bruised up faces, my staring faces, my blank faces, my goofy faces, all collected with family members that I spent time with, but feel no connection.

Even in the pictures I look to be an observer. I am there, but not there. I exist, but not in the same world. I am floundering in a dimension where people can see and talk to me, but we are speaking different languages, we are not on the same plane. It is like a Twilight Zone movie that never ends. As I looked through the photos of people, I stared a little mournfully at the faces that were mixed in — those who I did not know at all. People who were somehow a relation to me, but either I never met or I was too young to remember ended up mingled with my photos. I wondered and asked out loud, what are you doing here? Who are you to me? And then, I thought the same thing about people that I have been in contact with my entire life. And the question popped through my head again, “What do I want?” I have no answer to that question.

Maybe that is the gaping hole that comes around and hits my arteries skipping through my blood cells to awaken something bigger in me. 

Maybe it is the purpose of my existence, to continually chase after it though it will never be answered. It is the quest, the journey, the desire to keep on going and looking for that unattainable thing. I found myself lost in thoughts as I sat on the floor with my childhood in hand, and I found one picture that was different from the rest. I have seen the face a million times. I still make the face for pictures, but who is she? And why was this image that was collected through a lens so much happier than the rest? Why were my eyes brighter? Why did it feel so natural? What was it about that moment in my life where I looked to be the real me? I vaguely remember things about the picture. My mom made the dress, she let me wear her turquoise earrings that were my favorite at the time and it was a big deal that she allowed me to wear them. I remember that I wanted to wear my hair up in a bun just like my mom.

However, it did not look as neat and pretty as hers always did.

I had frays straggling about and on any given day I still do when my hair is up in a bun — if I make it that far it is normally a haphazard bunch of flop tied into a scrunchy. I remember giggling and frolicking about in the dress, but that is all. I know that it was before I was 7 years old because I had baby teeth and no scar on my left arm from when I broke it. I broke it around seven or eight. I wanted to pull myself out of the picture and ask her, who are you and are you still with me? Of course, she is. I have not lost that part of me, but it looked as if my tiny little heart was not pierced with emptiness. It could have just been a good day. When I have good days it can wipe out all the bad ones then, when the bad ones come so do all of the memories and negative associations that are latched onto them. I also have days like today, they feel like I am in limbo. I am neither happy nor sad.

I feel content, but restless too.

I have so many thoughts that my mind feels like a radio station on scan mode. It will not stop talking, playing music, gathering vibrations from nature and humans alike. I feel connected to nature today, it makes me feel whole. The weather is strange, the pressure is changing it is cool and hot with wind. The sun is beating down on me and clouds continue to float overhead giving my skin a break from the heat. Birds are loud and fluttering about, ants are creeping on my toes. I feel at peace, as though I have come to some sort of resolution, but I haven’t a clue what it is. Still I have the flicker of the question, “What do I want?” I hear the answer pounding loudly between my skull, I want to be me! This stirs other questions and thoughts. Such as, who am I anyway? Have I ever had a figure that I used to gauge who I wanted to be like?

Who or what have I used to help guide me into an identity of my own?

Have I ever had a person who I wanted to be like? Have I ever desired to be just like so and so? The answer is no. I have not had heroes or mentors. While growing up I recall me saying to myself “When I grow up I am not going to be like my parents, or any other authority figure in my life.” I collected, categorized, and infused all of the negatives so that I would make sure I did not do them. I made rules for myself and if my behaviors or attitudes were remotely close to those negatives I would panic and quickly change my ways. I confess, I still do this it is hard not to — I try not to fall into that pattern of thinking. I also, pulled from their positive qualities, but my motives were always to “not” be like so and so. When my friends had things that I desired, I wanted to gain it for myself. I would think of ways to work for them or achieve them.

I did not do this with appearance.

I do not think about those things. I would automatically assume that I was unattractive so there was no reason to waste my mind on desiring to look like someone else. I do recall longing to have a family like several of my friends had. I observed and stashed away the great things that I witnessed with happy families, waiting for the day that I had my own. I did not desire their material possessions too much; most of them let me borrow those things anyway so it was like I had them. If I wanted something that badly I worked for it and got it myself. I did not want to be better than, anyone else I wanted to be the best me. I am happy with me and somehow it feels wrong to say that. I desire to be connected to people, but if that requires me to become like them to be their “normal” than, I can’t.

I have no desire to do that, mostly it is impossible.

I will mimic for a while, but it will not last and sooner or later I will realize what I am doing. Ultimately, becoming confused about my role in the relationship with them. It goes back to my lingering hole and the question, what do I want? I am still not sure how to answer that, but I am certain that I will continue on this journey of seeking the answer and in the process I will keep growing and changing. And for me, I think that is an excellent way to live life. I have a fearful feeling when I encounter things that I fear, but it does not stop me from tackling it. I have known fear so long and have had to do things by myself for most of my life so to me there is no other option, I have to face them or else my life will stop moving forward. This hole has  triggered a little feeling of fear so I shall embrace it and see where it takes me. I would surmise that I want to no longer be fearful of sharing me and embrace that each day I may discover something old, lost, and/or new about myself.

The echo that I feel is a journey that I never want to end, while embracing all of me in each moment of time. 

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State Testing Was A Positive Experience!

I wanted to share what a positive experience state testing was for us and why. I especially wanted to share because last year I had a minor panic/meltdown leading me into anxiety driven research mode about state testing and I ended up writing two posts about it. (State Testing, IEP, Accommodations – Concerns and State Testing, IEP, Accommodations – Questions!) My anxiety induced research modes can be quite useful and fabulous for staying fixated and on task, so I am thankful for them many times. This research mode helped a great deal in finding out what accommodations and requests I could make for Daniel and Joshua not only for state testing, but for their IEP’s. I had hoped to gain knowledge, wisdom, and insights from other experiences that parents had, but I did not find much on the topic.

I did not hear from many people either, so it left me to wonder if I was the only one.

I knew that many parents before me had gone through the state testing process, but I had not found anything from them nor did I receive much feedback from my posts. I am not sure why, but now I feel that for those who may be experiencing similar feelings or who do not know how to handle state testing I will share our experience. I am also, working on a post about IEP’s — I hope to have it finished this week. I went into the IEP meetings with all of my requests listed for accommodations for Daniel and state testing. I had an understanding and knew what I could receive for him.

I had already made up my mind that if his needs were not met that I would opt out.

However, I wanted him to have this experience. I was concerned for Ariel as well because she has such intense anxiety with new experiences. Her social anxiety can become overwhelming for her as well. She shutdowns and cannot think very well when she is in anxiety mode. Still it was important for us to attempt this to stretch ourselves and also, for us to engage on some level with the local kids that also attend the virtual school. You never know where you can meet kindred spirits or engage in a new social encounter good or bad. It is good for me too because it helps me to overcome my own anxieties, meet the teachers in person, and interact with other parents.

Ok, ok how was it positive?

Environmentally, the place they chose was a local business college where the rooms were quiet and cozy. It was a comfortable atmosphere not loud. There were some buzzing fluorescent lights, but they were not too distracting. (The break room where I was at was another story. I had to wear headphones and listen to loud music the days I was alone in there.) The chairs were soft and comfortable and the desks were a nice calming shade of grayish blue. The walls were clear of distraction. It was not busy with people in and out. The phones were not ringing wildly. The teachers were pleasant and did an excellent job at keeping everything organized and timely.

I would say it was a safe and positive testing environment.

Personnel, as I mentioned the teachers did an excellent job. However, they started weeks before this. Their homeroom teacher prepped them with live lessons (virtual sessions) by going through similar questions that they would encounter on the tests. I was concerned with what they considered “prep” for state testing because I did not want the kids to spend the better portion of their schooling simply learning how to take tests. I found their methods to be supportive of building up the children not solely based on the tests themselves. The sessions were engaging, interactive, fun, and made the kids familiar with what it would be like. The attitude with the school and the teachers was to make the children feel good by reiterating not to worry about if you get the answers correct, but let the tests show what they have learned.

There was no fear, pressure, or demands put on the kids to perform well. 

This is not what I remember from my state testing years. Maybe it has changed, I do not know. With the way that everything has been worded it feels as if no matter what the scores the children of the school will not base their smarts or self-esteem on the outcomes. I hope. I suppose that can have much to do with the parents as well. The preparation was positive. The teachers for all rounds were enthusiastic, positive, motivating, entertaining, engaging, and considerate of anxieties and fears. They allowed the kids to have fun during breaks. They were able to walk around, play games, talk to each other, and come to their parents for each break. This helped Ariel a quite a bit The first test she was so nervous because of the test, but after she took it and was able to come see me I could see her anxieties lessen.

By the end of the tests she was giggling and playing with the other kids.

That was for the first and second round. The third round Ariel was more socially anxious. I did not know that at the time, she told me later. I wondered why she did not talk much to the girls and wanted to be with me most of the time. It had been so long between seeing them that she no longer knew how to interact. Plus I think she was over the whole testing thing — she is ready for school to be over. For Daniel, he was with his special Ed teacher who he adores. He was not concerned with the tests one bit. He did not want to do them, but he did do them for her. She is an amazing teacher and has been a wonderful advocate for us. I treasure my experience with her.

The teacher’s attitudes, organization, and comforting personalities made for a smooth, less stressful experience.

For Daniel, there were specific accommodations to make his testing as pleasant and anxiety free (less) as possible. He qualified for the test that is only multiple choice. He tested by himself with his teacher. He was allowed to have her read to him. He received extended hours and breaks when needed.  He could have fidget toys and any other items that would help him focus, process, and he was able to stim in whatever ways he needed. He could walk around when needed. He had his noise reducers and was also given the freedom to chew gum if he requested it, as well as have crunchy snacks. He did not want them except during his breaks, but he knew that all of these things were available to him. They tried to make the environment and conditions as resembling his home learning environment as much as possible.

It worked!

Daniel did incredible. He completed his tests and left there both days feeling excited and proud of all that he had accomplished. He was happy to have that one-on-one time with his teacher and he talked so much I was amazed and ecstatic at how much he stepped out socially with different people. He does not normally go up to people he does not know and start asking questions on his own, but he did on both days. :-)  It was pleasing to my heart to see him so happy. I do not know what his scores are and I really do not care. He did pass his reading test several months ago so there are no worries about him being retained. He will be moving forward to the fourth grade. We have our IEP end of year meeting on the 15th and will go over everything from this past year.

I cannot give enough praise to this school and the special Ed teacher. 

She has made it so validating and relieving for me with both Daniel and Joshua. The kid’s homeroom teachers this year have been accommodating and have given me fantastic ideas when I have gotten stumped. My worries subsided about the testing accommodations after our IEP meeting at the beginning of the year. I was listened to, respected, and most of all Daniel was everyone’s main priority. His success was and is our goal. It makes a huge difference to have that support from the teachers and the school. This is a testimony that if we work with our children they can thrive. Both of the kids left from the experience feeling good about themselves and about state testing. They have no dread or anything negative to say about it. I left with a sense of relief about all of it and I even had a fabulous time talking to a few of the mothers.

I admit, I never thought I would say that our state testing experience would be so grand. :-) 

Side Note: All things went well for the testing portion, but Daniel needed to decompress after each testing experience. No matter how well things go whenever we participate in something new, process large amounts of information, meet new people, go to new environments, change our routines, etc … we still will have some sort of response. It can manifest through meltdowns, shutdowns, stimming much more, being highly sensitive with our senses and emotions. When that happens we need to feel safe, accepted, and routine needs to be maintained as much as possible. While this may not apply to ALL Autistics, I am pretty sure many will agree with me. Patience, extra accommodations and sympathy at home, and being mindful of these things can make a big difference. Even after having many positive experiences, one negative association to a new experience could erase it all and trigger negative responses in the future.

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Many Facets of Expression: Expressions of PosAutivity #AutismPositivity2014

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Today I am participating in the Expressions of PosAutivity, I was not sure if I was going to be able to express what I had hoped to … I am still not sure I did, but I do believe I share my positive experiences with expression and how important it is to not only be flexible with other’s ways of expression, but for ourselves as well.

Silently Spoke

I had words,
but could not speak
my eyes misled,
my smile inappropriate,
this body danced,
it pounced and pranced — I spoke

I had many words without a useful mouth,
lips tied; double knotted, invisible string
eyes blinked immeasurable worlds
ears that sang colors for no one to feel
my hands stroked brushes in minglings,
emotions without voice — I spoke

my own personal meltdowns,
shutdowns raging in a stoic face,
masked and cradled in between scratching hands,
nails penetrating flesh,
scars coated in silenced words,
erupting to speak out,
words aggressively broke free,
these fingers glided letters in form — I spoke

~~~~~~

I shared a poem first because many times, it is my only way I can express myself. With poetry, I find that words flow out easily – they are the parts of me that are stirring, but I have no understanding about them. I can write out in bursts of words, then it can take hours, days, weeks, and yes, even years to finally grasp what my mind and/or body were trying to tell me. When the words come, in that moment I feel deeply connected to myself and others who may be in my thoughts. I may not have the fullness of why, but I do know that in that moment the expression makes perfect sense and will manifest answers or connections to other things at some point in time — that brings me peace and comfort.

I think that the Autism Positivity flashblog has been an incredible source of enlightenment.

I personally have gained new insights about how people communicate and express themselves since it started. As I have experienced the various ways of expression within our Autism Community in general over the years, it has given me insights into my children, my husband, and myself. Reading from so many perspectives and personal journeys has opened my mind and heart even more each time people share. I have enjoyed reading the posts shared in our community from Autism Positivity and find such a comfort when reading the posts. This year, I am very excited to read what others have to share about expression and more from their unique points of view.

As I thought about the inspiration, my heart flowed with what I have been experiencing over the last few months.

I have been more observant and mindful of the different ways that people communicate. I have been studying how to read facial expressions, the environmental and emotional reasons for their responses, the purposes and motives for communicating, and gaining new understandings about how communication is expressed in such vast ways. I had an understanding of all of this, but I had not made many connections nor did I fully comprehend how powerful it was to accept, motivate, cultivate, and encourage each person’s means of expression. There is so much that affects the way we communicate. As an Autistic adult, I still struggle with finding ways to communicate, but in the years since blogging and creating/sharing my poetry blog, I continue to press through.

The more that I have been flexible with finding ways of expression for myself, the stronger my identity and voice has become.

As a child into adulthood, one means of communication was dance. However, I did not understand this and I know that others did not either. In the midst of feeling overwhelmed, feeling a meltdown or shutdown coming, I would turn on music and flow with the words and/or tune. I had no idea that I could actually use this to communicate to others. I only used it as a means to “get out” all of the emotions that felt trapped within my mind and body. Several years ago, I allowed myself to try new ways of expressing myself through art of various kinds. I never thought I could paint or draw anything — I did not allow myself to try because I had been labeled non-artistic based on my art grades in elementary school and from the discouragement of my teacher.

My form of expressing art was not traditional.

Since I learned to write as a child, I found that it was what came naturally to me and it was something that I could keep hidden from everyone. Though the physical act of handwriting hurt and still does (I have dysgraphia), it was something that I HAD to do. The pain was worth it to write out all of the things, worlds, ideas, thoughts, that I had in my mind. I ached to share, but I did not receive positive feedback. I was even told by loved ones that what I shared did not make sense to them or it wasn’t their thing. That is discouraging to hear, but it did not stop me from writing or creating poetry. After so many years of hiding my forms of expression, I decided to write openly to an invisible audience without any idea what would happen.

For me, there were several reasons for beginning my blog.

If I were to narrow it down to the most simplistic reason though it would be that I was seeking an outlet for expression. I was seeking some way to communicate and connect to others and myself. I longed to be heard, but my voice had been trapped for so long that it was a struggle to find my words through any means. I had long given up sharing the most hidden parts of my mind, feelings, thoughts, and views. I had learned to mimic and mask, though I have always been an outspoken person for others. That is one reason why David was so surprised by many of the things I wrote in the past, I was so good at not being me that for him to read my inner workings was a little bit of a shock — for the good, but it took him time to process. However, for me I felt I had no way to share without being corrected, judged, condemned, misunderstood, or worse yet not being heard, thus reiterating my fears and pains of feeling invisible.

I wanted to share about my journey and share about our Autistic life, but what transpired was more than, I could have ever imagined.

Thanks to our Autism journey, I have found many answers to my past. After Daniel receiving his ASD diagnosis, I chose a path of working toward helping him in whatever ways were best for him. I had no idea that seeking answers and helps for him would also help me. Through my parenting journey, I realized how important it is to me that my kids all have a way of communication so they can share what they feel and what they think with us and the world. I did not know that an Autism diagnosis would lead me to finding my voice (Aspergers/Autism Has Given Me a Voice) that I had long tried to suffocate in order to make it through another day, nor did I realize how many people had stifled me causing me to feel as though my way of communication was wrong or did not matter.

While Daniel was completely nonverbal, his main source of communication was a way of aggression.

He had no other way of expressing himself. He was not punished or forced into other responses. I am not saying that was or is an easy task, but I feel as a parent I can control my responses and be more understanding, so it is my responsibility to do what it takes to help him. Some may not see this, but for me I feel that exercise/working out is a way to express emotions or things stuck inside me, such as frustrations and anxieties that I cannot find words for, those I try to store them up in an imaginary box. I save them for the Saturdays at my Kravfit class then, I put on my boxing gloves, punch and kick it all out. I am usually screaming and yelling too as it is an appropriate environment to do it. So I knew Daniel was telling me something when he was physically aggressive.

However, it took many guesses and long periods of time to figure it out.

It was frustrating for both of us. I will be honest we still have these days. By seeking ways to help him express himself, such as creating books all about his likes, dislikes, days, events, and adding social stories, he gradually learned more ways to express himself. He has since been able to express himself more so through verbal communication and at times he will attempt art, but throughout his life one of his main forms of expression has been through music. He has always made a beat – thumping, tapping, pounding, whatever he could use to make a rhythm. It took a while to figure out, but what I recently discovered is that many times Daniel is expressing his mood through beats or rhythm.

Was he telling me these things when he was nonverbal?

I would say most likely and I missed it. I do not see this as a lost opportunity, but as a new positive that can manifest even more ways for Daniel to express himself. I wish I had known at the time, but I did not. Now that I do know it opens up new thoughts, ideas, and possibilities to explore. Music helped him learn words when he struggled with them in the conventional ways. Music is helping now in music therapy – he is gaining more confidence in his own thoughts and voicing them. We hope that on those days when he loses his words that using the keyboard or iPad to share his expressions will give him the outlet he needs to express himself. He could find that typing out his words is much better for him.

He may use that as his main means of communication — we are flexible with that.

If that will work best for him, so be it. It works best for me! Learning more about how others communicate has helped to bring healing to my marriage and to our relationship. Since David has become more flexible, he has gained more understanding in how to communicate with the kids and I. It has opened up a relationship between he and Daniel that is amazing to witness. David has his own ways that seem foreign to me and I to him, but being open and willing to learn has allowed us to find ways to communicate better, clearer, and with more empathy. Ariel expresses herself through drawings. She tends to shut down or if she is deep in thought, I find her drawing out elaborate illustrations and pictures of her thoughts.

Joshua builds his expressions or he uses objects like tape, metal items, cuts up paper, and empty boxes to share his thoughts, ideas, or feelings.

I see this in our Autism community as well. We all have our own voice, our ways of expressing ourselves, our individual creative outlets that are a spectrum of greatness. Not everyone can communicate or has found their way to communicate in our community. Some of our children do not have a way to express themselves and even our adults who are so quickly forgotten. As a community, it is vital that we are open to flexible ways of expression. We need to be on the cusp of seeking out inventive ways to make it possible for those who cannot speak traditionally to discover ways to express themselves and share. I believe the future does hold a lot of promise for the generations to come, but we also need to be focused on the here and now.

For the parents who long to know what their child wants, needs, and the thoughts that they have to share.

For the Autistics now who desperately want to be heard and understood, we need to be mindful and observant of what responses are truly speaking instead of assuming or expecting everyone to express themselves in the same ways. I am not sure what to look for, but being in such a multiplex of ideas, expression, perspectives, and talent has broadened my awareness and understanding of my own ways of communication. It has given me an appreciation for how and why people express themselves the way they do. It fuels my desire to want to see everyone find their own way of expression and feel accepted for it. I see such value and importance in being flexible because it could be the key to helping someone who felt as though they would never be heard or overcome with feeling invisible the opportunity to express themselves and let their communication be loud.

Who knows what sort of wonderful ideas, thoughts, person we could be missing out on simply because we have not been flexible and accepting of their way of expression.

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