Tag Archives: social anxiety

The Kid’s Half Marathon: They Did It!!

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Wow! September whisked by me before I had a chance to realize it. The last two weeks had been rough, but good things did come out of it. I haven’t the time to write about it now and I want to stay on topic. There were times this past week when I was not sure the half marathon was going to happen for me or for Daniel. Everyday seemed to spiral into stressful experiences. (Anxiety triggers, weather changing, thunderstorms, routine change, not being able to get words out, allergy issues, stomach problems, sound sensitivity, and countless other things that were going on gives you enough information to know that we were all having our struggles here.) However, on Friday it took a turn for the better and we all had a fantastic day.

I was so happy because that was the night that the kids were to finish their last mile in their half marathon.

They were full of excitement and ready, when we left the house it was a little chilly, but by the time we got there the winds had picked up. The temperature dropped significantly. It was FREEZING! I was not dressed for it, the kids were not dressed for it, David had to go back to the car to find any jackets or coats that I had in there. Thankfully, I always have things because I am usually cold. I was in such a heightened state of excitement and social anxiety that I was not thinking in my usual overly prepared sort of way. We got there and huddled together as the crowd formed. I planned for David to walk with Daniel while I ran/walked with Ariel and Joshua. Daniel did amazing in this setting; we were surrounded by loud, hollering kids who were full of excitement and energy. He had his sound reducers on, but lately they have not been enough.

I wanted him to have fun more than anything.

If it got to be too much the plan was for David to take him somewhere like the car or back into the building. He was not sure what to expect, either was I, but I prepared him as much as possible. He knew that if he felt distressed or overwhelmed that he could leave, but he did not. He stayed with us in their age group then, right before we were to take off he had to use the restroom so they started later. I was not certain if they were going to do it, but Ariel, Joshua, and I had to take off. The wind was so intense it was pushing my little Ariel back. I held her hand to guide her along a few times. We ran, walked, ran and walked; Joshua wanted to run so I told him “Go for it!” He did, I was amazed because in all of our walks and runs he got tired first and would sit in the road – good times. ;-)

He ran faster than us and stopped to wait for us.

I yelled out to him, “What are you waiting for?” And He said, “I am waiting for you guys.” I yelled back, “Run, buddy! If you want to run, run!” He said, “Ok!” then took off. It was great to see him take off smiling and running across that finish line. Ariel and I were a few seconds behind, but the wind and the cold was really getting to her. She wanted to stop, but I told her, “You have worked so hard for this, you can see that finish line, don’t give up now we are almost there.” It was kind of freaky to see her face because it looked just like mine from the pictures they have taken of me in some of my races. Her eyes were set, her face was focused, determination rang through her body, and she went for it.

She did it!

My aunt was the mc and warmed up all the kids before they started, she was also at the finish line. As they ran down she was cheering them on and encouraging them to keep going. I made sure they were ok, got them their snacks and drinks and then focused on looking for David and Daniel. I started to panic because I did not see them anywhere and I was concerned for Daniel because he has had such a hard time lately. I went running back down the mile stretch, they were nowhere to be found and I did not see any other kids. Finally, I saw a mom with her little girls and asked if she had seen anyone else back there. She told me there was one more, I asked, “With headphone looking things?” She said yes, and I RAN!

I found them around the corner around the half way mark.

Daniel was walking and pointing to all the shiny black veteran memorial tiles in the middle of the bricks on the pathway. I was overjoyed to see him and I had a moment of cherishing how much he loves shiny things and details. BUT we had to get to the end, everyone was waiting and he had put in so much effort over the past two months – I wanted him to get his medal. I grabbed his hand, David was holding his other and told him, “Daniel look there is the finish line, we have to run.” He started to run a little, but was still hesitant. Then, he heard my aunt over the microphone hollering for him and telling him, “Come on Daniel you can do it!”

The cheers of the crowd could be heard all the way where we were, he was smiling and running.

I looked down at him and said, “Daniel, you just stole the show!” He ran, leaped, and had the biggest smile on his face all the way to the finish line. I was almost in tears, it was such an emotional experience to see and hear all of the adults and kids cheering, and hollering encouragement and Daniel’s name. He ran straight into my aunt’s arms and gave her a huge hug. They got a picture of it and you can see his face, I can’t share it yet until I purchase it, he had the biggest smile. I was (am) so proud of all three of them. They did amazing! We walked/ran 22.21 miles before their last mile. It was good exercise and bonding moments because we talked and explored as we did our miles. David went with us on several occasions which made it a fun family activity.

They each received a finisher medal AND it was the same one that the adults got the next day.

I thought that was such a wonderful thing, all the kids who participated put in a lot of effort to do their half ahead of time — they deserved one too! I was excited to tell the kids that all of us would get the same medal; it was a bit more special to share that together. The best part was how proud all three of them were of themselves. We set out a goal, we went above and beyond, (they only needed to do 12 miles before the race) and they finished! I was ecstatic that Daniel could enjoy himself. I asked him how he felt about the people cheering for him, he wasn’t too sure, but the rest of the night he kept showing me his medal and was overflowing with happiness. He did so well, we were also able to go over to my aunt’s house after my half marathon the next day for over five hours.

He is still chipper today and full of all kinds of energy.

Tomorrow, school may be too much so we will ease into it. If they are up it for we will definitely do that again next year. It was such a positive and fun experience. Ariel and Joshua said that they want to do a 5k with me so … I guess we will train for one. Woot!

I am posting about my half marathon right after this one. :-)

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Fall Brings On The Loops & Feeling Blue

Many of you who have read my blog for a while know that I have a huge challenge with understanding relationships. I have improved in my understanding in many ways and it has helped me with settling certain fears, confusions with some of my relationships. My sudden anxieties, confusion, fears about uncertainties of relationships, and panic attacks about what I have said or done have not gone away. My panicky loops, heart crushing feeling, lump in my throat, nausea filled thoughts are still there. Yep, they are still here lingering, waiting, and looping whenever triggered. When it happens, I feel a sudden blackness fill my mind.

My heart feels like it has been slivered into pieces – its glass shattered all over the place!

I have a lump in my throat, that at times manifests into tears, or hyperventilating episodes. I close my eyes tightly, clutching every muscle in my body desperate to try and make my mind make sense of the situation. It’s like I can literally feel my neurons get blocked at pathways, they cluster at some road block and no matter how hard I try to understand what is going on I cannot. With all of my relationships, I have no idea what “we” are anymore. It does not happen as frequently as before, but when it does happen it is frightening. It is a frightening feeling to be in long-term relationships with people, especially, people you are related to, live with, or have been in a relationship with for several years. It is confusing for those in my life who care so deeply for me … who I have been able to express this to through communication, mostly written.

They cannot imagine feeling this way; I cannot imagine having the feeling of “knowing” in a relationship.

If I am not in constant contact with people who I do not feel are steady in character I get thrown by the relationship. What I mean by “steady in character” is that they are consistent in their behavior with me and with others (they do not blow to and fro with emotions, decisions, ideas, how they treat me, their beliefs, etc.). People who seem unsteady to me, make me anxious with their ups and downs that seem like progress, but then I realize that they haven’t — they’ve merely refashioned old patterns. I saw this many times growing up, and throughout my career, church experience, and other social situations. Yet, I did not understand it.

I believed it to be me that was a problem — it very well may be.

I am not suggesting that how I interpret people’s patterns and behaviors to be correct. I am suggesting that I may be incapable of being in relationships with people like that because they cause my mind to have too many “why” questions. They lead me down unhealthy, obsessive paths to try and figure what they are doing and what our relationship means. I need to solve this great mystery as to what they feel about me — although, even if they did tell me I may not be able to accept it anyway — no matter the response. There are certain people though who once we reach a certain place in the relationship, the anxiety and fears do not last long. I can usually trace the triggers sooner. These are rare and have happened through continual consistency, balance in the relationship, and mutual communication.

The communication does not need to be every day, but it is mutually interactive in constant behaviors and understanding of what we are saying and what we mean.

They do not manipulate with emotions. They do not use me for their emotional needs only to toss me aside when they have found someone else for their fix. I am not going to say that I have come so far that I can figure out who is doing this and who isn’t right away. It can take me years to figure out that someone is(was) doing this and when I do figure it out, I find it challenging to let them go. I want to believe the best in everyone and I do realize that many people, including myself, operate in behaviors that we have adopted from our environment, upbringing, and cultural influences, patterns that we have learned and adapted for ourselves to help us cope in this world. I get that, the hard part is realizing and accepting that some people are just not meant to be in your life.

My life, has been so filled with loss of relationships that the thought of letting people go is painful, so, so painful for me.

I feel as though I am rejecting them, when I am not — I am releasing them to find people who are a better match. The issue is that I have never been good at closure — I just leave. I stop communicating after a while. I give up and have learned that most of the time those people have not noticed that we are no longer in a relationship. After thinking about it, I realized that some of the people who have done that to me were probably not good at closure either. I bet they caught on much sooner that we were not a good match. People look for similarities, many look for people who are similar to them, think like them, act like them, and I have never been able to do that.

No matter how many friends I have I am still a loner.

Some days I feel really sad about this, some days I am overcome with sorrow because I am well aware that I do not fit in anywhere – even in the Autism community. I have said it before, and I will be frank (not a man named Frank, I will be direct) I am in a loop that I am completely exhausted from having to go through it time and time again. I feel like I belong everywhere and nowhere at the same time. I read from other Autistics and I am a mixture of all sorts of traits, patterns, behaviors, and I am also not the same. I feel a sense of loss, loneliness, anxiety, and a hovering sense of fear that has no name. I am tired, anxious about many things, and mentally drained when I feel this way my pattern is to latch onto relationship issues.

However, I also realized that my “loss of friend” loop does seem to be triggered around this time of year.

I feel lonely right now, but I do not want to be with people either. I can’t say that to people though because they can get hurt or angry. I have lost some hope that this loop will ever go away, but instead of dwelling negatively on it I will focus on the fact that I know this is a loop. I understand that many of these things will go away. I have more understanding about why some of my relationships ended, due to me and due to others. In the past, I took all the responsibility for the relationship ending “I felt I failed”, but now I am understanding more that they just fizzled — it was not meant to be, I suppose. I believe that they were able to find friends who were a better fit for them, which makes me happy for them.

Now that all of that is out, I will accept that my “fall time” blues are already rising. 

This year, I hope I can apply many of my new healthy coping mechanisms toward my “blues & loops” and help with my depressive thoughts. I do have another happy post that I plan on writing this weekend — I hope. It seems that I have been able to reclaim yellow! Yes, the color. I will have to explain in better detail in another post, but believe me reclaiming yellow is a big deal and is a good sign for me emotionally. Other good news, Daniel started his after school program this week and is doing great. Of course, there are transitions and anxieties to process, but overall he is a happy fella. Ariel and Joshua have had a great week too, they started going to science lab at the library and have built some more amazing Lego’s creations.

Those are the things I would like to loop about, happy kids and creativity! 

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Family Reunion – It Felt Good To Feel Accepted

This past Saturday was my big family reunion from my dad’s side. It has been over 10 years since we have had one and it has been that long since I have seen many of them. It is a little different for me because I had not lived here for so long; I missed many family gatherings and events that my sisters and other family members had attended. It fed into my feelings of not belonging, and isolation from people I was supposed to have some sort of connection with because of that. It escalated my social confusion and anxieties with them. However, when I would see them again I would feel an instant acceptance with many of them, not all. I feel more uneasy with certain family members that I have had more social contact with then, the family that I am referring to at the moment.

I was excited and nervous about the family reunion.

I was concerned about Daniel, I knew that he would enjoy himself, but would it be too overwhelming? Would I have to run out of there feeling judgmental eyes? Would people treat him like he was odd or admonish me for my parenting style? Would I have everything I needed to feed him? Would I have everything needed so he could have fun and not feel the sting of anxiety? So many questions! And they didn’t stop. I had plenty more for him, and then I had more for Ariel, Joshua and ME! I scripted, I planned, I prepared, I did all that I could think of to make this the best day possible. The good news is that I did not do that for months or weeks, I did start the week of because my own anxiety started to set in.

My anxiety had more to do with seeing my youngest sister because I have not talked to her or seen her in a couple of years.

From all that I have pieced together she either hates me or doesn’t care one iota about me and my kids. Either way, it stirs anxiety because of the uncertainty of the relationship. If you hate me, fine just tell me. If you don’t care if I exist at all, fine just tell me! I am ok with that – I am not ok with the not knowing. It caused me to be in almost hysteric panic state before leaving, but I believe that was just a trigger. I think with all of the schedule changes, school starting, mom coming in town, David being gone, my leg being hurt causing me not to be able to be as mobile as I normally am and the lingering “Oh, my goodness I am going be around people for hours!” the relationship confusion and uncertainty was what my mind focused on as a negative way of stimming.

So I got passed all of that and it turned out she did not come anyway.

I had had several interactions with family members that I do not talk to much on facebook too where I explained myself clearly and was open about being confused by their comment. I told one that I was Aspergers and another one about my social confusion. I had a moment of panic … for a few hours, but then something wonderful happened, they accepted me. They did not come after me with any sort of rude or dismissing comments they either “liked” what I had to say or explained themselves. I have found myself telling people more and more what is actually going on in my mind and explaining what I mean. I have become more open about Aspergers, my anxiety, depression, triggers, and how I process things too.

It has made such a difference to use my voice (in writing mostly).

I know that this blog has been the springboard for my new ability to do this with people in my physical life. (It has taken several years!) My family here, my dad, and step mom who live about three and half hours away have all been trying to be understanding and accepting. I have noticed major changes in how they speak to me and interact with both Daniel and me. I feel that with me being more open and able to explain my feelings/thoughts that it has contributed to our relationships moving in positive directions. It has taken me time to adjust and accept these changes – it is hard for me to trust after so many challenging relationships, but I am working at it. Ok, let me venture back into the great acceptance that we received as a family at the reunion.

Keep in mind; I am not sure we would have been able to go to a family event like this last year.

This summer has been filled with many unexpected “firsts,” for the kids and me. I am not sure that I would have been able to handle going to the family reunion on my own last year; I know that two years ago I would have most likely opted out. The kids did great, none of them were anxious with the fear-type anxiety they were excited/happy anxious. I was too after; I worked through my other anxious feelings. I felt at ease, I did not even think about what others might think or do by the time I got there. The kids and I were all smiles and ready to see people. I had already prepared myself for all the hugging, they are all very huggy and there are actually times when I do not mind hugs when I feel safe and I have prepared for them.

No one forced the kids to hug them and they just let them run around and be kids.

Daniel had to wear his sound reducers the whole time. We had to take several breaks outside so he could have some quiet, but it was good for me too – we gathered ourselves and had the ability to go back in. He was non-verbal the whole day, it was too overwhelming, but he did communicate to me through sounds, gestures, and taking me places to let me know what he needed/wanted. He was incredibly happy. He smiled all day long, went up to people looked at them and studied their eyes. No one got upset or agitated. He walked around to all of the tables sitting down in a chair listening, looking, smiling, or he wandered around the table looking in close at people and smiling at them.

Everyone was very kind.

They did not give him strange looks when he was hand flapping or while he was walking the perimeter of the building inside – we did need to walk outside too. He went to my aunt a couple times when he was getting overwhelmed and wanted her to hold him on her back while walking around or rocking. I normally do that at home or when we are out, it is rather amusing to see. He is almost as tall as me and over 60 pounds; when people say anything I say, “This is why I do boot camp so I can carry him.” Obviously, that is not the only reason – people have strange reactions when they see it so I use that as a way to ease the situation.

Ariel and Joshua had so much fun too.

They ate treats, played with water balloons, ran all around outside, and played with other kids. My aunt came up with a game for the kids to go around to people that they did not, write down their name, and one fact about them. Ariel went off all on her own and I went around with Joshua to help him write the things down. We went to one table and they had mentioned something about Daniel’s sound reducers. They thought they were head phones, I told them what they were and also shared the he was Autistic. My cousin looked at me and said, “Really? They think (insert name)’s oldest boy is Aspergers.” I said, “Well I am diagnosed Aspergers and this little guy is Aspergers too, so it does run in the family.” I smiled at him and noticed that his face lit up.

We were able to speak for a little bit, but not much – I believe that it may have given a little hope or at least peace when I said it.

I am not too sure; I do know that it was a positive experience. When I was saying my good-bye’s he hugged me and said, “I love you.” It was a moving moment for me because even though we had not had many interactions and had not seen each other in a very long time, I knew that he meant it. I actually, felt a lot of love on Saturday in a way that I have not been able to before with my family. I know the kids felt it too and Daniel especially, knew that people there cared about him, accepted him, and loved him. He knows immediately when people are not “feeling the love” so to speak and he wants no part of them or the environment. We had been there for over five hours; though Daniel did not want to leave it was time.

I was still not sure how the rest of the day would go.

After such an event we all need to decompress and sometimes Daniel’s only release is to meltdown. I wasn’t sure if our night, or the next few days were going to be filled with decompressing. I was feeling that and the need to get home quickly, I had to have several people help me out with all of our toys, bags, cups, etc … And all looked grand on the horizon then, by accident and fluke a water balloon hurled across the parking lot and landed right into Daniel’s bin of prized possessions – either electronic or solar-powered, fragile delicate solar-powered flowers and critters. There was a moment of shock and then, I uncontrollably lost it with “Oh, no! Oh, no! Please, God no!”

I grabbed a towel to try to dry off everything.

I was a frantic mess. All that was running through my head was If any of these are broken this day is ruined. All the happiness is gone! I will not be able to calm Daniel down. My night and the next few days flashed before my eyes and it was not pretty. His toys are not easy to get I have to order them online which means that it would take a couple of days to get here. I just wanted him to have a great day; I wanted all of us to have a great day. I wanted a positive memory so we could do it again. I wanted him to keep all the joy that he had. I knew that I had to gather myself, I walked away trying to get his solar-powered flower to work and I couldn’t – I was almost in tears. Then, the next thing I knew Daniel was standing close to my side, he was quiet, and calm.

He reached under his flower and clicked something, it was working.

He looked at me with his sweet face as if to say “It’s ok mom.” We walked back and my uncle brought a soothing calm presence too telling me, “Daniel is calm, you are calm. Everything is ok.” He was right, I apologized to Daniel letting him know that I panicked because I thought it was broken and later at home I explained to him how I was overwhelmed too. The kids and I talk openly about our challenges. Daniel has started to feel more comfortable and less confused knowing that I too have similar challenges. It has helped him even more to know that Ariel and Joshua have also had similar challenges. It has helped their relationships because it has helped his confusion as to why they respond certain ways.

I admit after I got home I struggled with feeling embarrassed about my meltdown.

My step mom texted me later to see how Daniel was doing. (He was doing fantastic and has been. Needs additional breaks and downtime, but we can do that!) I told her that I was struggling with feeling embarrassed, but I knew that it would pass. No one said anything to me to make me feel bad; they understood that it was a response toward other things. They may not have known the full extent, but they understood I was overwhelmed. I have longed for such wonderful experiences with my family. I find myself feeling an array of emotions about all of it, the tears start to well every time I think about it – they are good tears and cleansing tears. My heart swells at Daniel experiencing such love and acceptance; I feel it for Ariel and Joshua too. It is just a little different with Daniel though, I am not sure how to explain it.

I think anyone who has felt what I have throughout my life may understand what I mean.

When you feel that sense of being rejected, not belonging, confused by relationships, one could understand how amazing it is for someone you love to not feel that, especially your child who is already rejected by so many in our society simply because they are Autistic. Because of lack of understanding, denial, personal fears, etc … To be rejected by family because of it contributes a certain amount of pain that I have no words for, and I know there are many families who know this pain. It has moved me beyond any expression to have my family be so embracing of Daniel and us. It has changed something in me and given me a new sense of belonging, I still struggle with that. It is not all washed away, I have years of triggers, situations, confusion, and pain that will not disappear – it may lessen though. That does not mean it will not creep up and linger all sorts of distortions in my mind at some point, the difference now is that I am able to use my voice, even when I feel afraid.

There is so much going on in my mind I cannot get everything out.

I would like to say, if you read this and your family has not been accepting or even open to understanding autism you are not alone. For years, I felt alone and hurt feeling that my family rejected us because they did not understand or want to understand. It takes time to process autism; it makes it more challenging because there are such vast views and ideas. It took me time to work through my own process for Daniel and the process of accepting my own diagnosis. Trust the process, find people who can and will support you now, right where you are at, seek out people who build into you – it may not be family at this time, that is ok. Because I found people online that have supported me in healthy ways, I was finally able to articulate to people in my physical life what I needed and wanted in ways of support and relationships. I cannot give clear ideas sometimes, there are days when the support I need is to be there – no talking or touching just there. It can be in a text, a facebook message, or in the same room.

If you can find people who will support, stay (physically or virtually) with you, and accept you when you can and cannot express yourself, I think that is a good thing.

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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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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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A Day Of Pure Awesomeness!

Yesterday was a fabulous day, it was one of those days when everyone was feeling good and we seemed to be “flowing” as a family. I cannot think of a single day when all of us were feeling at ease and able to do things like we did yesterday — all in one day anyway. Despite the fact that I have had some stomach issues my mental state was rather calm — not feeling overly anxious or as if my mind was in a race with itself! Interestingly, the day before I was in an anxious state that was causing me some serious emotional ups and downs. I was pleasantly surprised to feel so good because we had planned on going to an Easter egg hunt at the Y. The kids have never experienced an Easter egg hunt except when I have done them in our yard. There was a small one at a church we went to a few years ago, but they were still fairly young.

They were very excited and I was excited for them.

I used to love going on egg hunts. My grandmother took me to the American Legion egg hunts when I was little almost every year. My mom really got into those types of things for me too so she always had our home dolled up in decorations and hid eggs and other goodies for me. Now that I think about it I have no idea how she did it because we had no money, especially no extra funds for such things, however; knowing my mom she probably took up some sort of extra work or sewed something for someone to get the extra cash. She always tried to make holidays grand. I digress … I went into a flashback of happy childhood moments. :-)

I was a little concerned about how the day was going to go.

The last few days Daniel has not been feeling too well either and Joshua has had a rough time of it with his auditory processing, more so than usual. I am not exactly sure as to why. It was such a beautiful morning that while I was at the store I decided to get them some bubbles and things to play with outside. I had hoped that this would help all of us with the excited/anxious energy while we waited until later in the afternoon to go to the egg hunt. It worked; we all played outside had bubble fun, and the neighbor gave us a frisbee while the kids played with that David and I had a nice round of badminton. I share that because it is a bit of a big deal to me that David came out to play too. He is not a fan of hot weather or being outside for very long.

After that we geared up to go and everyone was excited, but not too anxious.

The anxiety did not hit Daniel until we got there. He became overwhelmed with all of the kids, the new expereince, he did not understand why we had to wait, or why they did many of the things that they did. I gave him explanations, but the answers triggered even more questions. Because of this he was almost unable to collect eggs. I knew that he really wanted to and would have been disappointed if he did not participate so I finally told him, “Daniel I will answer all of your questions after you get your eggs. I know you want to get some eggs so let’s try and if you want to stop we will stop” He said, “Ok.” He collected his eggs and was glad he did. Ariel and Joshua took off and had a blast.

They had other things to do such as bouncy houses, a petting zoo, and pictures with the Easter Bunny.

While we were walking to the where those things were Daniel started to talk to me, but I could not understand him because he was talking so fast, but quietly. I got on my knees to be at his level so I could him better and he said, “Mom, I think I got overloaded because I did not know what was happening.” This was the first time that he communicated clearly what had caused him to feel anxious outside of our home environment. He has struggled with being able to express himself unless he is at home. I realized that he was also feeling badly about getting “overloaded,” but was not sure where to direct those negative feelings. It was a moment of understanding for myself too. There have been times and still are times when I am so excited and happy to do something, however; when I have no idea or a vague understanding of what is going to happen my anxious feelings overtake my “happy.”

They can cause me to become so frazzled and confused that the thing I wanted to do is no longer a fun thing, but a scary thing.

Growing up I internalized my feelings of frustration, confusion, and attacked myself with negative talk. I would and sometimes still do, breaking patterns takes time, think things like, Why can’t you just have fun? Why can’t you be like other people and just do it? Why can’t you just go with it? I did not have someone there to combat these negative thoughts, feelings, or to clear up my confusion. Quite honestly, I am not sure I could have communicated it which is why this is even more wonderful for Daniel because he did and that makes it possible to help him understand and rightly place these feelings. I expressed to him how amazing it was that he had the courage to try something new. He was feeling upset with himself so I pointed out all of the positive things that occurred.

I reminded him that most people feel anxious or want to know what is going to happen when they try something new.

He was flustered from the crowd of people and kids and all of the kids running around was overwhelming. I told him that many people feel that way too. Lately, when he has been anxious or overwhelmed I have been telling him that many people feel the same things. I give him examples and remind him that he is not alone, what I have seen is a new acceptance in himself. He is finding a sense of peace when I tell him about my own experiences or share others. I shared with him yesterday too on that grassy field and let him know that what he was feeling was ok and that he was not alone. Then, I asked him if he wanted to go on the bouncy slide and all things were happy again. We ran to the slide, but first made a stop to take a picture with the Easter Bunny.

The kids have never had their picture taken with Santa or the Easter Bunny.

It was another first, Daniel was not really into it and kept asking me, “Can it talk?” But he tried, and he discovered it was not too bad though he has no desire to do it again. :-) The kids had a wonderful time on the bouncy slide, they pet animals, Daniel is normally too afraid to touch or get close to any animals except our cat. He actually pet a bunny and got his face close to little goats! He laughed and smiled at the pigs, horse, and the cow. He stared at them with such a jolly face. Ariel and Joshua were having the time of their life. After it was over, Daniel requested to go somewhere else — he wanted to go to the park so he could swing.

We went to the park for over an hour.

Since it was getting into the late afternoon we asked if the kids wanted to go out to eat, I had not thought ahead for making dinner, Ariel and Joshua were all for it, Daniel was not sure until we suggested Boston’s they have gluten-free pizza. After that he was ready to go get some food. I had hoped that all would go well when we got home, but you never know how all of us will need to decompress. It was a lot yesterday and we were all tired. I suggested a bath for Daniel when we got home because I knew that would help him to have that relaxing time. He stayed in there for a while and came out as happy as could be talking and sharing about our day … asking more questions that had not been asked earlier.

David retreated to his room for quiet time.

Ariel, Joshua, and I cuddled on the couch watching some silly shows. We f\each found our calm. Today is going really well so far too, but sometimes the mind is still processing and may need to bring balance in some way that could be in the form of a shutdown or meltdown and that is ok. We need to feel safe enough to let us decompress. We have never been able to do so much in one day. We have never had an entire day expereince where everyone did fine and we did not need to go home, or go home and have a rough time of it for a while. It was fantastic to have everyone participate. I think it helped Daniel by having him involved in the decision making. We gave him (of course Ariel and Joshua too) the choice to try something or not. He was not pressured into doing anything that he did not want to and he knew that at anytime we could go home. He also, made a lot of choices on his own yesterday with positive outcomes. I have no doubt that this built into his self-esteem. That is our day of pure awesomeness as condensed as I could make it. :-)

I will stop and say Picture TIme!

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Experiencing Autism Acceptance In My Community

The first week of Autism Acceptance/Awareness Month has been incredible. I still use awareness because as much as I experienced autism acceptance this week I also, encountered many people who are unaware of autism. Being aware of something implies that you have an understanding, a sort of working knowledge. Several of the people that I encountered do not have this knowledge and they lacked understanding because autism is simply a word to them, or it is a mystery, a complexity to be figured out, and the representation of heartbroken parents and isolated/hurting children. I gave them a face, a personhood, an experience with a “real life Autistic” who could communicate some of the what’s and why’s about autism. In doing this, I was pleasantly surprised – I received acceptance, encouragement, and validation that I have not had in my physical world outside of family members I am close to.

During the months of February and March, I realized that I was becoming more vocal about autism, in regards to Daniel, Joshua, and myself with people.

I was shocked on several occasions when people started conversations with me that eventually led to a topics such as depression, anxiety, ADHD, sensory processing disorder, learning challenges, which I tend to be able to discuss without any difficulties or fear of rejection, but I found myself openly discussing and sharing our personal experience with autism. I even found myself sharing that I am diagnosed Aspergers. I plan on writing a post about why I have been hesitant in sharing my own diagnosis with people in the next few days, but to get to the root of it I have been afraid of how people would respond — I must be overcoming this fear because I have been telling practically everyone I discuss autism with that I am Autistic too! This is a huge piece of self-acceptance for me and it is helping to build my confidence for my ultimate hope which is to share with several of my family members.

Here are a few circumstances that have filled me with hope.

A couple of weeks ago, a woman from my cycle class and I sparked a conversation that started with her going on vacation, leading into seasonal depression among other things, and eventually led into me sharing about Daniel, Joshua, and myself. This openness led her to share about her sister who has a child with severe autism and a specific type of epilepsy. While I do not know her experience, I can relate, empathize, and share similar experiences – it meant something to both of us to share and have that connection. She was very accepting and though she did not say the words “You don’t seem Autistic” I could feel it. I was not offended – I understand that a vast majority of people have no idea what many Autistics go through or what we learned to do in order to cope with social situations and our environmental surroundings.

Quick interjection: I understand that it is challenging for parents/caregivers/family members/people to comprehend that Autistics who can talk or seem “high-functioning” can compare in any capacity with their loved ones or Autistic individuals in their lives who cannot communicate and are diagnosed as severe Autistics. I understand and I am sympathetic; however, I wish we could bridge this gap and find common ground in order to learn from both sides — all of us becoming more aware of personal experiences leading into acceptance and action.

Back to it!

The more people I have shared with, the more that I understand this. I try to simply explain that I can do very well at masking, mirroring, and mimicking my way when necessary, but that it is exhausting and draining. My other hope is to be able to build these types of relationships in my community so I can express to people how challenging social encounters and our environment can be. I know that many of the things I do to survive in social situations are now automatic coping mechanisms that take over. I do not even think about some of them and at times I feel as though I am having an out-of-body experience. I can see and hear myself, but I have no idea what I am saying or why I am saying something. Some of them are good and others are not – for instance, when I start babbling on and on and end up saying/sharing too much. I can work myself into confusion. I am trying to learn the ones that cause me to go into anxious loops or become overwhelmed — the more I am able to identify them and be mindful the more I am capable of having a positive social experience.

Some of my automatic responses caused me intense anxiety and obsessive looping over conversations.

I’ve noticed that my recovery time and looping have shortened the more that I embrace my identity. This is most likely part of the reason for my new openness and ease of verbal communication. I am experiencing a new ability to speak without my words coming too quickly or becoming too jumbled, confused, and frustrated. However, I also know how fragile I can be, so if I have one perceived negative encounter, I could spiral — I know how to process those moments better now, but it still happens. People have no idea. Many would never consider that while I am talking to them I’m spending a large amount of energy trying to be conscious and combing over every word I say in hopes that I am not misunderstood, inappropriate, not offensive, not monopolizing the conversation, or so odd that I get the “look” … you know the look where someone feels uncomfortable and wants to get away from you as quickly as possible?

I have gained a new awareness of these things – it helps with my own acceptance and ability to help myself. 

By saying new awareness, what I mean is that I had no comprehension, connection with mind and body – true awareness. My mind was working so hard on trying to control/understand my social experience that it struggles enough trying to process/filter/analyze/categorize all the sensory, emotional, physical, and the multitude of other non-verbal input. I do a great job at acting when I am having a good week. On a bad week, I usually do not talk, or I am more focused when I go into social settings. I make sure that I am alone as much as possible. People do not know any of this as they only see the hour or two of Angel at her best. It is when I get home that all of that intensity and processing begin to feel safe enough to unleash inside my brain and body. I have not been able to share things like that with people until this week and it has been received in positive ways. A while ago one of the women at the home school co-op messaged me about a woman who was going through the process of getting her daughter diagnosed for autism. She shared with the woman about me and the woman friended me on facebook.

I waited a few weeks for her to contact me, but she never did.

One day, I decided to reach out her. I had no idea about her views on autism so I explained to her about my family and told her that I was Autistic/Aspergers. I shared with her some of our story and experience with Daniel and I offered to give and share any resources I could with her. I approached her with acceptance whatever her views were, but I also made it clear what mine were about autism. She was receptive — we finally met this week and she was wonderful. Her heart is that of a loving mother who wants to help her daughter, but not only that, she wants to understand. She does not want to fix her daughter – she wants to build upon and work with her strengths. It filled me with hope for her family and as an Autistic. She was accepting of me and was appreciative for all that I shared. All week long I have ended up in conversations with people about autism.

The Autism Awareness campaigns around town have put it on people’s minds and it has given many unexpected opportunities to share.

I have found it interesting that several people have approached me with questions. At the home school co-op on Friday, a woman who I had not expected to have any interest approached me with some questions. We had a very good conversation and she shared that she believes that the little boy she babysits is somewhere on the spectrum. It does seem that way after talking to her and I was able to share with her the possible reasons for his responses. She was thankful for my insights and said that she wanted to “pick my brain” (yeah, I had to get past that visual! It was a good thing I understood that idiom). I did not realize how many of the women there had been watching me interact with Daniel. They have said things to me, which confused me and made me wonder what they meant.

I took some of their comments as hurtful and kind of isolated myself.

However, I noticed that after the first initial interaction, they tried to involve me in their own ways. In a group dynamic, especially with mostly women, they sense when one is going astray and will try to get you involved in the group. It can be a good thing sometimes, if I can overcome my instinctive resistance. :-) I was never aggressive with sharing about our lives, but when they asked me questions, I answered them and combated myths in a way that made them think. I was not sure if it truly made them think, but after Friday I believe it planted some good seeds. I did not dismiss them immediately and I listened to their thoughts – I believe this helped make me feel approachable. No question has ever been “wrong” or too much for me, but I do answer as directly as possible in kindness.

Sometimes I am sure that they wished they had not asked me questions about my “special interest” or maybe they did who knows.

In the midst of questions from the woman, I told her that I was Autistic without any hesitation and I explained to her how the Autistic brain processes differently. I used the visuals that flooded my mind in order to help her try to “see” what it feels like — it seemed to help her a lot. I also expressed how each autistic experience can be very different – though we share many similarities, we cannot all be categorized or thought of in the exact same ways for our needs, strengths, desires, or how we learn, express ourselves etc… On Friday, I actually shared with several people about our autism life. I was able to share with people the diversity of autism within our own household, it helped bring awareness of how different autism is for each individual – many people are still not aware of this.

They do not have a working knowing or consciousness of the vast differences within the Autism Community and Autistic individuals.

This needs to be common knowledge in order to bring about the specific needs for each Autistic child and adult. Interestingly, I have discovered several people who are in my workout groups who have worked with Autistics, are currently working with ASD adults/children, or have friends, family with them in their lives in some capacity. It has been a wonderful experience for me after being so hurt and confused by my experience with people and family (Some Of My Story I …) not talking about it or deeming it as a negative. However, I think one of the most reassuring experiences was at Daniel’s music therapy. A couple of weeks ago, the therapist who owns and operates it and I ended up having a conversation that led into me sharing our life and my personal journey of being an undiagnosed Autistic until a couple of years ago.

I had no idea that our story would be inspiring, but apparently it was and she asked me if I would be willing to be interviewed for a video sharing our story.

I said yes without qualms because I have wanted to get involved in our community in some way, but had not found any place that had common autism values. She also shared that she was going to start an autism school in the next school year that uses the “assume competence approach.” I offered to help in any way possible. They are modeling the school after a school in Arizona that uses neurological music therapy. I will not go into it now, but my soul literally sang with joy when she explained to me their plans. Our community is recognizing the need for change, but many people have no idea what that means or what it looks like.

The challenge with any new paradigm is changing the old ways of thinking.

However, I am up for the challenge and look forward to moving forward in helping parents, caregivers, and especially Autistics in my community. Things are fast moving, but there is a lot to do. As I learn and participate more I will share the happenings. :-)  I plan to help with parent support groups as soon as possible. I hope that with David’s community connections we can help this movement in our community from awareness to acceptance, and reveal better ways to take action. This first week of Autism Acceptance/Awareness Month has boosted my enthusiasm for autism acceptance in my community, and ironically it has also given me a much needed boost in my own autism acceptance.

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I Love My Birthday … Well, I Used To Much More

Today is my birthday! I am 41 years-old and I love getting older. After a life of confusion, frustration, so many traumatic experiences … etc. and so forth to be able to celebrate the day of my birth and finally, understand why I am the way I am as well as be able to accept me is a great thing to celebrate. (Long sentence, huh?) I wrote a post in 2011 giving the reasons why my birthday means so much to me you can read it here What’s In A Birthday? It is not frivolous nor does it have anything to do with being a “diva” for the day. I am genuinely thankful to have a birthday because I was a child who was almost aborted. I share some of the story in that post above. However, I will not discuss abortion views or opinions so please do not comment on that.

I cannot say exactly why I am here or why it had to take this long to actually feel like I have value enough to share air with the rest of world, but I am here.

Prism ~ Artist Helene Kippert

Prism ~ Artist Helene Kippert

I am here, and I have been thinking a lot about how long I have kept quiet and even discovered that I have been overcome with shame about who I am. I love my birthday, I enjoy the day and I am not going to lie I love presents. I don’t care what they are I just enjoy getting them and unwrapping them. However, for the past few years a steading foreboding has begun to shadow my joyous day and it is Autism Awareness month.

March and April used to be two of my favorite months, they are being swallowed with the approach of fundraising and constant “panic” about Autism.

Not only does it stir up some intense emotions about autism and how it is viewed in our society, but it stirs dread. It creates a battle within myself of feeling happiness for my newfound acceptance and understanding for myself and it unravels my triggers of being misunderstood and condemned for being different. The added components of my own children being misunderstood, spoken of as a “tragedy and a burden” layers on new emotions that make me so sad and sometimes defeated. I am determined though, to not allow this to overcome me.

Today is my birthday and I will enjoy it!

In a couple of days Autism Awareness Month will be here, that is the last time I call it that because it should be Autism Acceptance a call to action for the world to learn, understand, accept, and move forward in educating everyone on how to help Autistics and their families. I plan on writing the month of April on several topics in regards to Autism Awareness month. I am not exactly sure what I will share, but I do plan on taking the month back and focusing on staying positive and not allowing ignorance, campaigns for organizations to get more money, or the lack of true action and help for Autistic families. I plan to look at what I read and see with positive and hopeful eyes. We’ll see how it goes. :-) I said, this on facebook the other day “I think I may turn it on “rainbow” or light it up “kaleidoscopic” for the month of April.”

Maybe if many people looked at Autism through a prism instead of blue they would see a lot more positive too. 

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