Redirecting: Finding Balance In This Season

Those who have been reading my blog for a while may have noticed that I am not posting as much as I used to. There are several factors for this; I could list them all but it will make this post much longer than it needs to be. I can get rather wordy. (And distracted.) ;-) I can already feel my mind going into many directions, thoughts, details, explanations, stories, etc … I do not want to pull you into the labyrinth that has formed to help me make connections and solve puzzles to bring me peace of mind. No, I will spare you this time. I have plenty of “mind-dump” posts that do that. However, I make no guarantees that this post will not be wordy. Ok, I will tell you a little bit because it will help to understand. Over the course of about a year and half, I have found that I have lost interest in some of my most prominent special interests.

They have been replaced with new ones.

I have some that get triggered into a great obsession for a few days, but then I am satisfied and go back to my new ones. However, my special interests have become much more balanced. I find myself utterly submerged in absorbing information, taking in details, studying every aspect to fulfill my need to feed the insatiable desire to answer every last question that pops into my mind then, suddenly I am awakened to daily life. To my surprise, I have been able to pause my thirst for answers until I am able to devote the time I long for. This is new for me and for a period of time it left me with a mix of emotions. I felt lost. I felt as though I had lost some part of my identity and it made me feel sad. Who was I if I did not have the unquenchable desire to go on a quest of questions, answers, connections, constant RESEARCH??

I felt confused and bored.

My thoughts had been in is such a state of frenzy for so long I could only label what I was feeling as being bored. The boredom I speak of is actually a state of mind that is good. My mind was calm, though I never stopped thinking, connecting, consuming information and details about my interests and all around me, I still felt something that I had never felt before. My thoughts were finding their place in my file folders tucked away, organized properly, in the file cabinets in my mind quicker. I was not looping as I used to, I still looped but it was different. I still loop, but it is not a painful agony. Literally, when I would go through some of my loops the heart ache from confusion or not being able to have answers drove me into the stages of grief that you feel when your heart is broken or you have lost something or someone very dear to you. It hurts terribly.

Don’t get me wrong, I still struggle with this and some triggers are far worse than others, but it has not caused me to shut down for days or weeks like it used to.

I have been able to figure things out on my own without the need to talk it through with David, or write about it the way I used to. I believe much of this has to do with all of the positive changes that I have made in my life. This summer, I have spent a lot of time with my kids. I have always spent a lot of time with my kids, A LOT of time with us being together so much that in a way it made me lose connection. I was not fully engaging and enjoying them the way that I wanted to. I was here and not here. So I have made it a point to stay off the computer more during our summer break. I have had my days where I needed to decompress and venture into my virtual world, but it made me see how much I was using it to try to deal with things.

It did help me and has helped me on many occasions, but I realized that I need to be more present mentally with them.

I am so proud of what Daniel has accomplished this summer in his summer enrichment program. He is such a happy fella and has enjoyed himself a great deal. He has become very affectionate which is new. He is explaining his thoughts to me this is new. He is trying new things and initiating conversations with people, those he knows and strangers without demanding that I talk to them and ask his questions for him. There are so many things that he is doing that I did not realize he was not doing — if that makes sense. I am proud of Ariel and Joshua too! I would brag all day long about all three of them, but I won’t. Of course, everyday is not like that, but I am sharing the positives because in the past I would not have been so much in the here and now that I could truly appreciate these things. I would have moment of joy and thankfulness then, I would quickly jump to the next distraction. I was so overwhelmed and just trying to get through my days using unhealthy coping mechanisms.

I did not do this on purpose; it was the only way I knew how to cope with all that I was trying to process.

There is so much for me to process on a daily, hourly, second by second basis that it is hard to keep a clear and calm direction. I had to go down some deep dark paths and face my past — I needed to accept who I was in order to find myself and accept that I will continue to change and grow. Logically I knew this, but I continued to have lurking thoughts that one day certain things about me would stop if I just found the right thing or the proper rule. I used my blog to help me and for the past five years it has been a life saving platform for me. It truly was my solace, my hope, my direction, and my identity. Now when I go through something I still write it out, but I do not publish all the time. I read other blogs that give great information and insights and think I really do not need to jump on that train. I no longer have the time to try to edit and reread what I wrote.

I am doing so many things that I cannot keep up with writing, sharing, or put in the time to do social media.

I wasn’t good at that to begin with now I am lucky to make it one to two days a week to visit blogs and facebook pages. After thinking about all of this for several months, and being stuck on the couch because of vertigo for several days, I decided that I need to keep this redirection. Because I was unable to look at a computer screen without getting sick, and I could not move off the couch because I would pass out or almost pass out, I decided to try and get the kids first semester of school ready. Thankfully, I was able to do that. I got all of the lessons prepared, created a new organizational system that I think will work great for all of us. As I got a little better each day, I created a calendar for new adventures that I have planned. When I was able to read the curriculum it occurred to me how much more attention they are going to need from me. I am going to need to be more creative in ways to help them and to cultivate their learning independence. It was then, that I decided that I was going to take it easy from blogging.

I already have, but I needed to make it official in my mind.

I plan to write and share when I feel like it. There are so many great things that I have planned for them and myself this next year that I want to make sure I get it on here to help me remember AND to share with those of you who read. The funny thing is every time I think I am going to take a break from writing something usually happens and I end up writing a ton of posts. We’ll see what happens, I am not stopping I am just cutting back. I feel a real need to devote more quality time with my kids. They are getting to that age where it is going to go by so quickly and I want to savor as much as I possibly can. I am looking forward to this year. I am excited about the new school year, I wish it was a few months away, but I am excited. Again, we’ll see how the start of the year goes with new teachers and working with therapists.

I am hopeful.

Goodness, I tried to make this short! To finish this up, I am redirecting and focusing on my home life. I have a couple more races before the half marathon. I will be training. I am still studying for my group fitness certification, hope to have that complete by September now. I had to push it back because David is going to be out of town much more during August and September. I am trying to find ways to get funds for Daniel to continue with the school that he has been going to. They will be offering an after school program, but it is such a large chunk of money I am not sure how we will be able to do it so I will be focused on trying get grants. That takes so much time. I cannot recall the other things, you get the point. I will end this post here, and say thanks to all of you for reading and sharing in our journey.

It will continue just not so frequent, I suppose. Until next time, best wishes!

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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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Our First Fireworks Display!

This has been the summer of new adventures, no doubt, but last night was one that I never thought would be possible. Every Fourth of July has been a nightmare for our household. I personally, get so nervous, anxious, and overwhelmed with the noise that it is challenging for me to enjoy them, but I do love watching the colorful blasts explode filling the black sky with wondrous sparkles — I do love that. The kids love that part too, but the unexpected, loud, booming noises have been too much for them. I believe it was last year, that Daniel was able to watch them from inside our home without going into a panic. That set the stage for this year and his desire to go to an actual firework display.

Ariel and Joshua have wanted to go for so long, but they too are overwhelmed by the sounds.

Since so many new things have gone well overall, we decided that we would try it this year. The kids were excited and overjoyed. The kids and I were outside most of the day as they played in their pools. David took a much needed break from work inside the quiet house. :-) I made a traditional (to my family) type of celebration meal with hotdogs, hamburgers, potato salad, deviled eggs, (David’s favorite) and other veggie sides, plus a strawberry pie! (Recipe here Spring Fruit – Strawberries, there are several recipes on that page, but I only made the pie. I did not have time to do the nut crust so I made this one instead – coconut flour pie crust, I used coconut oil instead of butter.)

It was a lovely day. 

When the time came we ventured downtown to see the fireworks. The pros of going somewhere to see fireworks is that it eased my anxiety a little because I knew when they are going to do them, what to except for the most part, and when they would end. I had a script from my childhood, I also went to the website to see their agenda. This helped me prepare the kids too. When we stay home we are at the mercy of the people surrounding our entire neighborhood. We never know when they will set them off. How long they are going to set them off. What types of fireworks they will set off — people around here like to buy illegal ones that are like mini-bombs that have no other purpose other than to be very loud. I really dislike them. The place was crowed and that always makes me nervous. I do not like being surrounded by crowds just in case we have to run out of there. I have always been like that, not only with the kids.

My whole life I always have multiple exit strategies within seconds of arriving to my destination — even family events. ;-) 

To make this short and sweet, we found the perfect spot for us. We were not too close, far enough away from the crowd, but close enough to see the fireworks in all their glory. The kids loved it! They were so excited and had smiles on their faces the whole time. They all wore their sound reducers, which I believe made things much better. Next time I am wearing some because it was really starting to get to me, the booms were invading my body with such rage that I became irritable shaky. I was able to enjoy them for a while and the happiness on the kid’s faces helped me at times, but all the people, smells, crackling speakers, flickering street lights, and all the other things that I absorbed became too much. I hid it well for the kids, but I was shutting down by the time they were over. I convinced the kids that we needed to run as fast we could to get to the car.

I REALLY wanted out of there. 

I made up some sort of story about needing to escape the crowd, just being silly. David joined in my imaginations and the kids played along for a few blocks, but then tired out. I got us away from the suffocating mass that was coming up fast behind us so my plan worked for the most part. ha ha ha The kids told me all about how much they loved it and Daniel asked questions the whole way home. The poor cat was frazzled and scared from the neighborhood fireworks. He is still recovering and is very skittish. Today we are all feeling the effects of the experience. David and I have been talking quiet all morning and Daniel keeps getting upset at us, insisting that we are too loud. He is in his room playing at the moment — getting peace and making his own noise.

Ariel and Joshua are feeling it in their own way, but they are playing together with Sonic and friends plush toys. 

I am writing this to help process and to ensure that I do not forget this “first” that turned out great too. We are all tired, a bit cranky, processing all the information and sensory from last night, and in recovery mode. Today I decided that I am not going to clean the house or do the laundry as planned, I am going to play outside with the kids and allow myself to recover — hoping that the stress of the house and laundry to not overcome me. I can do it all tomorrow, right? I hope that for my fellow Americans that you had a wonderful day that was not too overwhelming with booms and blasts. I will leave with some pictures and wish you all a fantastic rest of the weekend!!

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Joshua’s Birthday Weekend Bash!

Joshua is 8 years old today!! Yay! The last two weeks have been a whirlwind, but now that I say that I realize that I have been saying that for at least a year. This year has been nonstop with all sorts of new adventures, changes, and our everyday life is so full. This is much different from when I first started this blog. Onto this past weekend, well Saturday I had planned a birthday party for Joshua. Unfortunately, every year Joshua’s birthday falls on a weekend that tends to be busy for everyone. I tried to get more people to come and plan a party, but things just fell apart. I was more concerned with how Joshua was going to take the disappointment because he can take things very personal — if not reminded of the actual circumstance he can fall into thinking that people did not want to come or that they did not come on purpose.

I came up with a plan to try to make it not so disappointing for him.

He also, wanted another Sonic cake which to be honest after the past two weeks the thought of trying to do that was overwhelming. Instead, I offered the idea of some gourmet cupcakes. After I told him what they would be he was “ok” with that. However, when he saw the tasty treats that I made then, ate them he said, “I am so glad you talked me into these cupcakes mom! They are SOOOOO good!” Score! ;-) I planned a family party with just us and offered to do it in the morning so he would not have to wait, another SCORE for me. Another good thing was that my dad and step mom were town for her family reunion and they were able to come over and visit for a few hours. It was really pleasant and all of the kids were happy to see them.

Chocolate cupcakes with a marshmallow frosting!

Chocolate cupcakes with a marshmallow frosting!

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(Recipes here Paleo Chocolate Cake with Maple Peppermint Chocolate Frosting and Marshmallow Frosting)

On a personal note for me, I am finally good with the relationship with my dad. 

I am at peace, I am glad that I told him about being diagnosed Aspergers and was able to explain to him about how I think and what I feel. It did help a great deal in my anxiety levels with having them come over because I did not feel as if I needed to hide myself or that I was keeping something from them. Good all around. I digress! This is about my Joshua. To ramp up the jollies, I added another cool thing to the mix. I told him that on Sunday we would go to a pizza buffet that had bumper cars and an arcade! Big time score. The majority of his gifts were Sonic items — his current special interest. He did get a couple of Lego’s, but he was an excited and happy fella with the gifts and the cash that he got from his Grandma K. (David’s mom) and my dad and step mom. He is buying more Sonic items. :-)

I wasn’t sure how the arcade place was going to be, it is something like a ChuckECheese. 

It was very loud in the arcade part, but where they had the food and tables it was not too bad. Daniel and Joshua both wore their sound reducers in the arcade. They all had a blast and they even had gluten free pizza so Daniel and I got to eat too. It was very good pizza by the way, I was pleasantly surprised. Daniel told me, “I love this place.” Then, he asked “Can we come here every Sunday?” Um, no. I should have worn some sound reducers too it took a toll on my auditory system and made me fatigued the rest of the day. Not just that we are all fighting off some sort of cold that is going around, even when I am having a good time being social takes a lot out of me, and the whole experience of planning a party only to have it fall apart took readjusting. Even still it was a fabulous weekend, we are all resting and recovering — Joshua is not resting so much he is too busy to be sickly!

He is playing with his new toys. 

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I know that I got something right when he tells me that he has had the best day, he has said it two days in a row and that is record for him. He can get derailed if the slightest thing goes “wrong” so I am extremely happy that he has felt that everything has gone well. Daniel and Ariel got a little something too. Ariel asked for a human skeleton model, a tarantula, or a frog skeleton model. We got her the pregnant woman model to go with her pregnant tiger model she currently has. She wants them all so she can study them and learn to be prepared for when she is a doctor/veterinarian. Daniel requested solar powered flowers to go with his collection. He plans to build his own house one day and have it be completely solar powered. He loves solar power!

Here are some more pictures of our festive time!  

 

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Struggles With Body Dysmorphic Disorder, Eating Disorders, & Sensory Processing

If you are not familiar with Body Dysmorphic Disorder here is the definition:

Body Dysmorphic Disorder is a mental disorder characterized by a  a preoccupation with a defect in  the person’s physical appearance. The defect is either imagined, or, if a slight physical anomaly is present, the individual’s concern is markedly excessive. The preoccupation must cause significant distress or impairment in social, occupational, or other important areas of functioning. Last, the preoccupation cannot be better accounted for by another mental disorder (e.g., dissatisfaction with body shape and size in Anorexia Nervosa). ~ Body Dysmorphic Disorder Symptoms By PSYCH CENTRAL STAFF

My dysmorphia fed into my later developed eating disorder. I have come very far in my recovery with my eating disorder and my BDD (I am not “officially” diagnosed, but I do seem to fall under the criteria. Having a name for it has helped me in recovery even if I am not officially diagnosed.) however; I confess there are times when my mind is high-jacked into obsessive thoughts about my perceived defect, in my case this time it is my stomach. I have had different parts of my body be the object of obsession; I have overcome several such as my body hair, my nose, and my birthmark. Those were long lasting, but I did have others come and go such as thinking that my skin had a green tint and I thought everyone could see that. It was one of the reasons why I went to a tanning bed so much in my past — I thought that when I was tan the green tint went away.

I still struggle with my arm hairs, thinking that they are gross, thick, and I feel much better when it is summer time and they are blonde.

During the winter, they turn a slight color of brownish blonde, but to me they stand out and I think that I am hairy like a monkey. I am not kidding. People have reassured me over the years that my arm hairs and any other hairs do not look as what I describe seeing. (It doesn’t change what I see.) I have had obsessive thoughts leading myself into downright sobbing at the sight of the hair on my body or face. I am told that people do not notice it all. I do not notice these things on others. I am not sure if other people who also struggle with BDD do not see anything wrong with other people, only themselves, but that is how I am. I have spent countless hours thinking of ways to “fix” these flaws or what is worse; I have spent my time on wondering what everyone else sees. I imagine all of these people finding me grotesque and in the past there were days when I was afraid to leave the house for fear of being stared at. I was terrified to share my picture on here or my facebook page. (I go back and forth on my personal page with family and people in town. I always feel nervous when I post a picture of me.)

What I see and what they see is something entirely different.

Of course, I know that not everyone will find me attractive, but that is the thing — I do not know if someone does or not. Why are they looking at me? I assume it is because they think I am ugly because of past encounters and social confusion. I cannot say that I have always felt that I was ugly or that it was a concern to me. I do not think about it much. Have I wanted people to find me attractive, yes. Have I been surprised when I found out someone did find me attractive, YES! Does it feel good to be told that I look good, yes. However, I do not spent my time seeking after that or wondering about it. Mostly because no matter how hard I try I have no idea what I truly look like, it is just frustrating and I have many other things that I would rather spend my time on. The times when I was concerned with it has been when I had friends who primped and focused on their looks. I would adopt their perceptions and believe that I was supposed to feel and act that way too because I did not understand.

When I did not think about it or shared that I felt ok, I was corrected in ways such as, being told that is what “men want, you have to look good to keep a man.” 

I was led to believe that I needed to look a certain way in order to get and keep a man. This was the message I received through media and social circles. I would do it for a time, but I would grow tired of trying to figure it all out. It was too confusing. If I said that I was ok with myself then, I was conceited and full of myself. There is no winning. I can trace each of my body fixations on words that were spoken to me. I cannot give an exact statement for each of them, (I can for some) but I have visuals of events and people surrounding the moment when I began to notice a flaw. My birthmark is obviously the biggest one that led to many others; my family does not understand what it is like. When I bring up that someone was gawking at it or made a rude comment they dismiss it and say things such as, “I don’t even notice it.” Since I am thin and they consider me attractive they act as if I have no struggles in the area of appearance. Although, in a way they are correct. I do not put emphasis on it like some of them do.

I am not saying that is bad, they enjoy getting dolled up and looking nice every day.

I enjoy it on occasions, but I also feel fine without doing it. (I am speaking about the women in my family.) I like people more natural anyway, it is my preference. I used to think of ways to try to fix my flaws and make them go away. I have thought about getting surgery for my nose, laser treatments for my birthmark, a tummy tuck because I think the skin on my stomach is so gross. Those thoughts have come on my worst days. On my absolute worst days, I have researched the procedures to see what they entail and how much they cost. I decided in my teens to keep my birthmark and not go that route, but I still have my days. Sometimes when I go out and people make “that” face, the shocked sickly face that looks like they are saying, “What the hell is that?” If my anxiety is off the charts, I find myself fighting back the tears. There are days when I hold it in until I get to my car and the tears just fall.

Thoughts flood my mind from school being bullied, being told how ugly I was, I am that little girl all over again.

But that little girl is one tough cookie, so she cries, feels all of the emotions, and reminds herself how far she has come. I do the same when the others pop into my psyche, but the one that I cannot seem to triumph over is my stomach. I have struggled with it since I was a child. No matter how thin I am I see this huge bloated belly with skin, wrinkly skin! Even when I was 98 pounds my stomach looked so big to me. I hated it with every part of my being. I would look in the mirror, stretching it, poking it, pulling at it, clawing at it. I did workout after workout trying to make it go away to no avail. I kept a lot of my struggles with these self-images in my head because logically I knew that I was not seeing what others saw.

I was constantly being told how thin I was, but I could not see it.

It still happens, and I cannot see what others see. I am now able to look in the mirror, but I still do not recognize my face. My body feels foreign and unfortunately, on my best days I still look at my stomach in the mirror every time I go to the restroom. Most days I am ok. I contribute that to my new workout lifestyle. Since creating a workout schedule with various types of workouts, I feel more connected and balanced to my body, though I still struggle with that too. However, gaining muscle, stability with my vestibular, getting a handle on my anemia, and incorporating so many types of workouts has brought a new awareness and mind/body connection that I have not had in a long time, well ever like this really.

I am mentally more balanced and able to combat these irrational thoughts much better and recover sooner.

So last week when I found myself being bombarded with these obsessive thoughts and binge eating, I thought, I know this pattern — why is it happening. The binge eating threw me because I used to only binge eat when I was limited on funds or when in social settings where I could not eat in front of others so I starved myself until later when no one was around. Then, I would eat everything in sight! I am not an emotional eater as a matter-of-fact I am not a fan of food at all. It annoys me and if I did not have to eat I would not. It takes time away from the things I would rather be doing. I love to cook and bake for others, but for me not so much. Anyway… I took notice of what I was eating and paid attention to what I felt when my brain felt satisfied. It finally struck me, I was seeking some sort of sensory input. I wanted crunchy and I wanted meat –a lot of meat. So my body needed protein, but my mind needed crunchy.

Things that happened:

  1. David was out of town.
  2. Prior to David leaving, he told me his schedule up to October. He shared the out of town trips that he will be taking, which are much more this year. This led me down a spiral of anxiety because it will disrupt my workout schedule and it will be during school.
  3. Daniel was upset all week; it was full days of meltdowns with him and Joshua.
  4. I was not on my regular routine.
  5. The kids were off schedule and were struggling with the change of David not being here. (Not sure why it made such an impact this time around.)
  6. I could not workout on my normal days, so I did not get several of the workouts that I desperately need to help with my stability and deep pressure that they provide.
  7. I began to feel invisible, like no one noticed that I was not around in real life and online.
  8. I was tired.

I suddenly, found myself consumed with chaotic thoughts, anxiety, and fixated on my stomach.

It was an eyesore. But I could not stop eating so I really was getting bloated and sickly. I had stomach problems all week too. I decided to look up binge eating and sensory issues and I found this link, What Is Sensory Processing Disorder?

“When a person’s ability to tolerate certain foods is affected,SPD produces symptoms that are similar to certain eating disorders such as anorexia nervosa or bulimia.” (From above link)

I have written things before about my eating disorder and how it wasn’t really like what others went through. I was anorexic no doubt, but not for the same reasons as most people develop an eating disorder. It makes more since that this is due to my SPD and sensory issues with food, my sensitive stomach, and my anxiety pulling me to be in control of something — anything, when my life feels out-of-control. Food and my body were the only things that I could control. I could not control people; they were too confusing and hurtful. I could not control my environment it was confusing, loud, and unpredictable. I could not control my mind, it would loop, get stuck, become fixated on something and starved for information, emotions, and/or understanding — never stopping or satisfied.

My pattern of controlling my food and focusing on a body part(s) has been with me so long that it can manifest before I know what is happening.

It is much like my relationship loop, something triggers it and the next thing I know I am utterly confused by all of the relationships in my life and I have no idea who cares about me. This one does the same thing, I am feeling good, comfortable in my own skin (As much as possible for being the alien being that I am.) and BOOM my stomach has become a foreign entity with skin that I find gnarly and it is GROSS! I feel ashamed to wear a bikini in my backyard afraid of the neighbors seeing me. I will not wear a bikini out in public, partly because of my stomach and partly because it makes me feel uncomfortable. At the beach it felt different, I was far away from people, but at the pool it feels too closed in. ???

I caught my thoughts and reminded myself that what I see and what others see is not the same.

With the mirror, I tried to not focus on my stomach. When I do look in the mirror I normally look quickly, I tend to focus on one area anyway because I cannot comprehend the “whole” of me. My face is always a surprise to me, I never know it, but at the same time it is familiar. I have no idea how to explain that. I do not like looking the mirror because I can get confused by my inability to recognize me or try to deal with the constant struggle of not knowing what I look like. My body always looks misshaped and odd too. The only gauge I have for my approximate size are the clothes size I wear, but those too are various so I really have no clue.

On a day-to-day basis my struggles are nowhere near what they used to be.

I do not spend time being confused like I used to be because, honestly, I no longer have people in my life who make me feel badly about myself. I stay away from people who give off that vibe. I feel really good most days too; my body does not hurt (usually, except my knee it is acting up, :-()and is not sickly a lot. I am not as fatigued, unless I have been overly social. My mind does not feel out-of-control like it used to either. I still have days when my thoughts and anxieties can get the better of me, but the majority of the time I am good. I take this past week, as a learning experience to help me for the next time. I am not making myself feel bad and I do not have shame about any of this. I admit that I did last week, and I did feel embarrassed too.I was wrestling with thoughts about why can’t I be over this? and why is this so hard? 

BUT these other things are huge in my recovery. 

I may always have these struggles, I may relapse into old patterns, but I came through this one with more answers than I had before and more understanding about myself. I came through this comprehending a little bit more that my eyes are not accurate when it comes to my body that is ok because I feel good about me anyway. If you struggle with any of these things please talk about it. Share your story with someone who you can trust, even anonymously online, if anything write it out for you. Do not feel alone in this because you are not. Find help if you need it, get the support that will help you. You have nothing to be ashamed of or to feel bad about. Feel free to comment if you too are struggling or have and can offer some insights! Each day is a new one, some are good some are bad, but you can learn and grow through all of them. Here are some things that I read and other resources.

Past posts that I have written about this topic. 

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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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