Tag Archives: communicating

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

IMG_1460

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. :-)

6 people like this post.

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! 

3 people like this post.

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.

2 people like this post.

Me, My Mom, And Our Shenanigans

My mom flew into town on Friday, we were so proud of our trickery because we had actually pulled off this big surprise for my grandma. For those who are unaware, my mom is also an Aspie/Autistic. We are very different in many ways, and oh, so much alike in others. One of them being we are terrible liars, but out of the both of us I am the worst at keeping secrets like surprises for people. I get so excited! I am notorious for blurting out what a gift is when I am told repeatedly “Do not tell them what the gift is.” An example, one year for Mother’s Day, my mom, her brother, and my grandpa had all contributed to get grandma a ring with all of our birthstones. Mom kept reminding me not to say anything and said that we needed to keep this a surprise for grandma.

The day we picked up the ring I came walking in and said something like, Grandma we got your ring.

Granted I was a little kid, but I have done this well into my adult life. I script over and over “Do not say anything,” but it takes so much energy to try and come up with other things to say and to “convince” my mind that I am not lying or that it is ok to “evade” the truth for this special occasion. My mom is better at it because surprises and doing fun things like that for people trumps her hard core “I cannot lie” mechanism in her mind. :-)  She loves surprising people, but do not and I REPEAT do not surprise her. She dislikes surprises very much. Me too, but I enjoy doing it for others who I know will feel happy when surprised. She too can struggle keeping such secrets from her mom; we both almost exposed our shenanigans to grandma. We had to be crafty because grandma is smart and will start figuring things out.

Grandma had a rough week physically.

She got some strange bug bite that became infected, had a bad reaction to the antibiotics, couldn’t get her knee shots because of the infection, then thought she had gall stones so went in and got a shot for that, but she pulled through and when I came home with my mom surprising her I think it boosted her spirits. We celebrated her birthday yesterday, it is actually on Monday – she will be 80 years old. She was so happy and was feeling much better. I am glad that my mom went against all of her natural instincts to do this for grandma. It took a lot for my mom to make sudden plans, spend money that she had not planned for and take vacation time that she did not plan for months in advance. My mom would not have been able to do this even a year ago.

She normally does not deviate from her work routine or her budget unless it is an emergency.

We have both come a long way in the past year, even in areas that may not seem like a big deal to others. Much of the reason is we are both doing things that we are good at, that feed some our special interests, and we have people who may not understand our ways, but are accepting and supportive of them. We have people who encourage us and do not get upset or treat us badly for being good at things. I think many Aspies, possibly women more so, experience people who get jealous or confused by how well we can do things and how much we can accomplish in short periods of time. That is just a fleeting thought. For us, having all of this in our life after years and years of being beat down spiritually, emotionally, in some cases physically, it has given us a new sense of self. It has given us our voice back, and we have regained a lot of identity that we had lost. We have done this throughout my life; we experience similar types of ups and downs together – just an interesting tidbit.

I will end this with the conversation my mom and I had on the way home from the airport … and a little more. 

We laughed and laughed so hard. I do not know how many others will think it is as hilarious as we did, but I am sure some can relate. :-)

Mom: You need to friend me on facebook. I sent it to you a while ago; I had to change my page.

Me: Oh, ok. I was not sure it was you so I wasn’t going to friend you. I meant to message you, but got busy.

Mom: Well, friend me so I can see what you are saying about me. (She laughed – this is in reference to my sister telling her that I posted that my mom was making me lie to my grandma and I was dying inside because of it. I was joking about her making me lie.)

Me: Ok, I guess I’ll friend you. (Then, I shared all sorts of things because I could not remember what I had and had not told her since we last talked. Our conversations usually sound like we are downloading information to one another.) Right, I told you that already. Well you know I can’t remember. We talk like every three months, download everything and then we don’t have anything else to talk about for another three months.

Mom: I know, I can’t remember either. (As she was laughing.)

Me: People must think we have the strangest relationship. I see people post things on facebook about their mom and them being best friends and they talk a billion times a day. My goodness! What do they talk about? I would say, “Why are calling me so much? We just talked!” and you would say, “Stop calling me, I already talked you once this week!”

[At this point, she and I were laughing because had anyone else been in the car they most likely would not “get it.” Also, because we find our relationship amusing in comparison to others, how we speak so directly, straight to the point, honest, and informative. We do not chit chat, and there are many times that we simply sit in silence.]

Mom: Yeah, well that is just the way we are and we understand it. I don’t get their ways, never have and I never will.

Me: Yep, well they may not understand us and we do not understand them. Their mom as their best friend? I mean, I would say you are my best friend, but I am not going to talk to you every day. Come on, I don’t even know what best friend means! What does that even mean?

Mom: (She lost it laughing hysterically.) Right, what is a best friend? I don’t know. We are just not wired like them and it’s ok.

Me: Yeah, it’s ok. At least, we understand each other, NOW.

My mom and I have always had a strange relationship, good and bad; extremely confusing to us and others. We cannot live with each other, but if we do not have contact in a certain amount of time we start to panic and have to reach out. Even if we had been upset with each other. It’s different with her and my sisters, they have contact a lot more often. In some of my past posts I have explained that my mom was only 17 years-old when she had me. She was an undiagnosed Aspergers woman, who had a rough upbringing. All of the things they say not to do to Autistic children were done to her and beyond. She persevered and has led a successful life despite many, many obstacles from others and herself. My own self-discovery of being an Aspie led to my mom’s self-discovery. After I read Aspergirls:Empowering Females with Asperger Syndrome in 2010 I believe, many of my doubts were diminished about whether or not I was an Aspergirl – I saw clear traits in my mom. It helped me to understand her too.

However, I still have days where I doubt.

Some days I feel like maybe my diagnosis is wrong, but then I read from others and see my traits or my actions in real life remind me in boldness that I am indeed Aspergers. I related very much to that book and I got it for my mom along with this book Asperger’s on the Job. She read Aspergirls and could relate to several things, but what actually happened was she finally understood a lot about me. When she read Aspergers on the Job she finally understood a lot about herself. Blending the information of both, gave her the answers she had longed for her entire life and we have been on a journey of healing, recovery, and acceptance ever since. Many things contributed to this, but those books were a pivotal turning point for our relationship.

My oh, my! We both have come a long way to self-acceptance, understanding ourselves, and each other. :-)

Related post: Gifts For My Mom

3 people like this post.

The Summer Is Almost Over …

We start school in two weeks; it seems like the summer just started! I do not think it helped with all the cold weather we had here. We could not go swimming very much because of cool temperatures and Daniel was unable to make it through screaming kids. I can relate, it seems like kids are yelling and screaming much more than they had in the past. Not tantrums or acting out, they are just screaming as their way of talking — they skip words all together and go for the AAAAAAAAA!! Maybe it is just me; my sensory issues could be more heightened. :-)

Other than that, this summer is going down as one of the best, for sure. (I just said, “for sure” ha ha ha)  

We did so many new things; we had a great deal of fun together. David participated in several more activities too which was nice. I started the transition to school this past Monday, it went ok. My hope is that if I start now by the time we actually do start they will feel more at ease and it will go a little smoother. Next week, Ariel and Joshua are going to camp at the museum all week long. It will be interesting how everything goes. (I think I am speaking for myself mostly.) They will be there from 9 am to 4 pm. They have not done anything like that before; I believe they are going to have a fantastic time. They are going to do all sorts of activities from physics to art.

I wish I could do it too!  

I will be enjoying some time with Daniel. He is going to be happy to have me all to himself all day long. I have plans for us to do things too. It is such a challenge to spend alone time with each child, I want to set aside time again to spend with each of them … I am thinking “type-loud.” This time with Daniel may help his transition into starting school a bit more. David is leaving the week school starts too and the last time he left the transition did not go well, with the addition of starting school I plan on taking extra time to prepare him — all of us. However, we have a nice distraction that weekend to look forward to; my mom is coming to surprise my grandma for her 80th birthday!

I am not telling the kids yet, but I think it will be something that we can look forward to — to help us through the first week of school. 

Then, the weekend after that, David will still be out of town, I have a family reunion on my dad’s side. I am looking forward to that too. I have not seen many of these people for over 10 years and they can be very entertaining. We are all odd and quirky in our own ways and many of them are a lot of fun. They live all over the Midwest. I am anxious, of course, but I think it will be good for the kids to see how big my family actually is, they do not know many of their extended family members on my side or David’s side. Ariel always talks about wanting to meet her cousins and know more of her family, she will get too soon!

I do not really have anything insightful to share, I just felt like posting.

This summer has been so different from the past; we have had many good days. Although, when that happens I tend to feel sideswiped when the rough days come. I get overwhelmed when I find myself having a bad day too. It’s like I expect all days to be good ones once they start and I get taken aback when something spirals me or affects the kids in some way. I am not sure why I am always surprised by it, but I am. Yesterday, I became discouraged with myself because anxiety was starting to overcome me. Instead of spiraling down the path, I accepted what I could do. I voiced it to others and tried to move forward. I still had anxiety, and I still do today, but I feel ok.

I am resting. 

I think one thing that I have gained even more understanding about this summer is how to accept when I can do things and when I cannot. Most importantly, I comprehend how much I need to stop being so hard myself when I simply cannot force myself to try something new or handle sudden changes. It isn’t easy for me to do those things and I finally accept that. (Today anyway, tomorrow I may feel differently. ;-)) I have had people tell me to just do it, but you know what? Sometimes I just can’t, I cannot “just do it” because it is too much. I have my kids to think about as well, when I force myself to do things when I am in an overwhelmed state it affects my kids. It makes Daniel very anxious too, he can feel all that energy and I do not think it is worth it to put me or them through that anymore.

I have done a lot lately, and next weekend I am pushing my boundaries again by doing a 10 k. 

I am proud of how far I have come over the months. (years) I am no longer going to let the words of others make me feel badly about my choices. I do what I need to do for myself and my family. I think this summer has made it clear how important it is for me to do that — my choices have not been influenced by others or past voices, they have been my own. The outcome has been positive for all of us and I would venture to say that it has impacted how well our summer has gone in many ways. I am not looking forward to summer ending; I hope our school year goes just as well. I do need to remind myself that there will be some rough days, if I don’t I will keep being surprised and that seems to shake me up. I suppose, it’s the sudden and unexpectedness of it. I also, need to fuse in my mind that they do not last forever. For some reason it always feels like they will never end. Maybe writing that out will help me remember?? Who knows! Although, my track record of remembering these things isn’t very good. LOL

I am done for now. Have a great week everyone!! 

2 people like this post.

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.

5 people like this post.

Happy Autistic Pride Day!

 

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

I am sharing a couple of my recent paintings too.

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

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

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

Some of Daniel’s Expressions

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

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

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

Proper Pride

hearts too delicate,

fragile in the face of our

world, but resilient -

steadfast, worthy, valued,

in the quest of change -

a path paved by those

who once were silenced; now SHOUT!

~~~

A couple of things that I read/watched today. 

3 people like this post.

First Week For Daniel At Summer Enrichment Program

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

2 people like this post.

Summer Adventures

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

I am in a much better mental and physical state.

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

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

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

The science, art, history museum!

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

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

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

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

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

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

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

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

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

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

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

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

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

What does your summer look like??? 

4 people like this post.

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. :-)

3 people like this post.