Tag Archives: melt downs

“But I Love It So, So Much!”

I have decided to read my posts about the kids to them before I publish and see if they feel comfortable with what I am sharing. All three kids were present as I read this out loud, it was a happy experience for all of us. I also, found that it helped Daniel with recalling events and talking about his feelings. Hm .. I wish I would have started this sooner, oh well I will now. 

This was Daniel’s third week of music therapy. The first week he was incredibly anxious, but that had more to do with all of the changes that he had been trying to transition into from my new schedule, his new schedule, and David’s new schedule. He was “happy anxious” about going, however; when we went he wanted me with him because it was new. After a fabulous first session, we ventured to the lobby to head home. I asked the accounts manager some questions and Daniel immediately went to a solar-powered sunflower that was sitting on her ledge. He asked me a ton of questions – I was not aware that so many questions could be asked about such a little object that had memorizing dance moves. :-)

Daniel refused to leave for several minutes, I was not sure if I was going to be able to get him to part with that little sunflower.

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It became a bit awkward, but you know Daniel’s feelings and handling situations like that in positive ways take precedence over anyone else. Frankly, I no longer care if other people are uncomfortable. I am referring to a parent that was in the lobby waiting not the staff or therapists. They were all smiles and tried to hide their “ok, that is a lot of questions and quite an intense interest in a solar-powered sunflower” faces. We could not stay there all day so I told Daniel that we would look it up on the computer when we got home.

He begged me on the way to get him one.

This concerned me because he was getting too intense about it and could not think of anything else. I pulled up the sunflower and let him look at it when we got home. At this point, Daniel was saying things like “I need it. Get it for me.” We were not in a position to buy it. Literally, I know the thing does not cost much, but our funds were strapped to the point of not being able to get a $10 gadget like that a couple of weeks ago. He could not understand this and the more that he got upset the more that it became clear that I could not get it for him. Somewhere in the midst of anxiety he had latched onto this gadget and by 2:00 pm he was ruminating to the point of sobbing because he wanted me to get him one or go get the one at the music therapy office. I was baffled. Daniel had never responded like this with any object — let me rephrase, Daniel has never been able to communicate this with his words before, he may have been feeling the same intensity, but the sobbing was new.

 At one point, Daniel said to me “I cannot live my life without it!” 

It broke my heart to see him so upset and say such things. However, it was also one of those moments where I was so thrilled that Daniel was using those words in that context. I know he got a similar script from Joshua because Joshua uses extreme words to express himself. He does not mean a lot of what he says, and half the time I am confused because I have no idea where he got such ideas. He is such a sweetheart and has a sensitive nature and the world impacts him greatly. He expresses that in the only way he knows how – we are all learning around here to find our balance and gain better emotional regulation. [And always will.] It’s hard when you are not sure what you are feeling most of the time. I digress … a lot. When Daniel continued to tell me how he could not live without the sunflower I asked him if I could hold him for a little bit and talk to him.

He let me until he calmed down.

As things settled I asked, Daniel why do you feel that you cannot live without the sunflower? He said, “Because I love it. I like the way it moves, I love it so, so much.” I told him the main reason why we could not get it and explained that the other one belonged to the lady. Then, I explained to him why I did not think it was a good idea for him to get the sunflower. I reminded him of how certain movements get him too excited. He looked at me with his big brown eyes, filled with little tears and such heartbreak that I felt like the worst mom in the world and he said, “But I love it so, so much.” I have to be careful with certain items that I get him because particular movements, lights, and objects can cause him to get over stimulated which is not a good thing. He does not easily come out of it and he will ruminate – seeking objects that feed into that stimulation.

He loses his words, ability to focus, his eyes glaze over, he does eat, and he does not sleep.

Some things I cannot allow him to stim on for his own well-being. I have some stims as well that I have to limit or eliminate all together for the same reasons. Actually, everyone in this household does. However, with the sunflower I felt that it was not necessarily the movement.  Daniel had never expressed such deep connection with an object even though he may have similar wants or responses to items he had never been so attached instantly. I felt that the object was giving him a penetrating calm for his anxious mind. He was seeking something to focus on to help with his transitions with all of these changes. I decided to look for an object that was similar, but with different motion. I asked him if that would work and told him that we could go look at some solar-powered gadgets. He felt better.

We found a solar-powered frog on a swing.

He has no challenges with back and forth movement so I asked him if he would like that when we were able to buy it. He said yes, and the rest of the week went much better — filled with questions of when he could get his frog and reminding me of how much he still loved the sunflower. When we went back to music therapy the next week he wanted to see the sunflower, but he was happy because he was going to get the frog. We did need to stay for a little while, but he was much better with leaving it. He also, went into his session without me that day. It was his idea he said, “I will go in by myself.” I was happy that his anxiety had eased. On the way home he said, “Can I go to music therapy forever? I wish to go to music therapy forever. I like it so much.” I told him that we would do whatever we had to in order to make sure he could keep going.

He said, “Good.” :-)

His frog came in the mail the next day and he was filled with joy. He has taken it everywhere with him since he got it. He has also, told me that he loves his frog too. Yesterday, he went to his music therapy and he went to see his sunflower right away. Then, he happily went to his session AND composed a song about instruments with his therapist. The smile on his face when he comes out of each session is like singing angels in my heart. (Did I just say that? Geez, I did. I am a cornball sometimes.) One of the therapists mentioned that they found the sunflower at the dollar store across the street. Guess who had to go to the dollar store? She did not realize how much Daniel had connected to the sunflower. We went – no sunflower. However, we did find little valentine solar-powered cupid devils.

He wanted one; we got it along with one for Ariel and elephant one for Joshua.

I will try to make this shorter, it was not satisfying and Daniel expressed to me how much he wished he could have the sunflower. After watching him with the little devil cupid who had similar movements, I decided to get the sunflower. Yes, the sunflower should be here in a couple of days. I am not sure why he has connected to it like this, but he has and he cannot let it go. I told him that he would have to take breaks from it if he could not leave it alone or if it caused him to get too stimulated. For now he is ok with this. It is difficult at times to know when and when not to give him the stimming items that he needs. I am not sure what it is about the sunflower, I happen to have an attachment to sunflowers so I find it interesting that he has attached to it. We will go with it and see what happens.

Some remarkable things transpired from all of this.

Daniel has never sobbed over anything which, I interpreted as him truly caring about it a great deal. Whether it is the sunflower or what the sunflower represents to him it does not matter, it means a lot to him. He has never used words like, “I cannot live my life without it.” He has not been so open to allowing me to comfort him and explain things to him when he is in such an emotional place – although, this was kind of a new emotional response. In the past, he was not able to see the item again that triggered similar responses of “want.” I had to call ahead of time at a few different places and homes before we came over to have people put the items away until we left. He was unable to let it go and triggered an upset if he still saw the items. I am over the moon to hear what Daniel feels. I am excited to see how music therapy helps him. I will end with Daniel’s own words from yesterday.

“Mom, I love music therapy. I love going to there. I love the music. I love my, what is her name again? Her, I love her. I love going because of her and the instruments, and because I love that sunflower so, so much.” 

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An Email To The New SLP

Right after Thanksgiving break we were taken aback with the sudden loss of Daniel’s SLP. (Speech-language pathologist) I received an email the morning that they were to return simply stating that she would no longer be at the virtual school and would no longer be Daniel’s SLP. This was a shock because she was so excited to return and continue to work with Daniel. The last day was an incredible speech session. Daniel has progressed so much working with her. There was nothing I could do it was over and we were at the mercy of the school and the therapists that they use. It took about two weeks to get him set up with his new SLP. I had my concerns about her, but have been trying to be open-minded. They only met a couple of times. I found it odd that she did not ask me anything about Daniel prior to meeting with him or afterwards.

She just went right to it doing whatever she does with all of her kids.

I am not sure if she has worked with a child like Daniel. He is a mix of the spectrum that quite frankly, I have not read many other people speak of. It is difficult for me to put into words, but Daniel is basically bouncing all over the Autism spectrum. That is the best I can do. He does not have fixations the same way that others do. He does not stay interested in things obsessively for long, just like his sensory challenges changing on a daily basis, so can his interests. He has some that stick with him, but he does not consume them the way that Joshua or Ariel do. It is hard to explain, but that is just another reason why rewards or withholding does not work. Not that I use that method, but I do know that the school and therapists have attempted to do that with him and it failed.

Daniel is about relationship.

When Daniel was completely nonverbal, I found the only way to get him to communicate was to be actively involved in what he was doing. Active took on a different action some days. One day it would be me sitting in the same room with him. Other days it was with me next to him. Then, there would be days when I did what he was doing I paid attention to how he responded and I did not push. He was responsive to this and our relationship started to develop to the point that I could figure out what he wanted more so than not. There was and still is the “not” days. That is ok, I have my “not” days. For instance, today I have no words or idea to how I feel. I know that I need something, but I am not sure what it is … I have to wait for my brain to catch up to my emotions.

However, I knew what I felt when interacting with Daniel’s new SLP today.

She was misreading him and trying to pressure me to do what she wanted. I would not budge. My priority is Daniel and his needs. It is much easier for her to bend to how she does things and work with him in a positive way to help him transition. It is much more challenging and it induces unnecessary anxiety in him to force changes. He has been on school break for two weeks, coming back to mid-year testing that gives no indication of how many questions are on the test because they are on the computer. I normally print out tests for him because it is much easier for him to process I cannot do that with these tests and I cannot tell him when they will end. Anxiety much? Visual processing overload much? On the first day back, he had to meet a new OT and was unable to say good-bye to the one that he had for over a year. He bonded to her and his other SLP.

He is sad.

He is grieving though no one seems to consider that. He does not know that he is grieving, he is just upset and does not understand why or how to process it. The last OT wanted very much to meet and do a good-bye session, but her schedule would not allow. I know that they have jobs to do and their schedules are full, but I really wish that people would understand how difficult this can be for children – not only special needs children, but all children. They bond with their therapists and teachers, even I had made certain connections to teachers and many of them I did not care for one iota. :-) It was hard for me to transition to each new grade and meet new teachers and kids. It was sad for me to lose a teacher that I was fond of and I would grieve the loss. I would also, feel the anxiety and fear of not knowing my new ones and then, trying to establish some sort of relationship with them.

Child hood is not easy; I know that many kids can bounce back from leaving or getting a different teacher.

For us, it is harder especially if we have made a connection and developed a positive relationship. I decided to write the SLP an email giving some insights about Daniel in hopes of improving the transition and to let her know I am willing to help in any way to make this a positive experience for Daniel. I am sharing here as well in hopes that maybe it will help others who have not seen it from this perspective. I am not angry with her I am just frustrated at the situation and feel unheard. I do not think the SLP is wrong, I think she has her methods and possibly they work for other kids, but I know that they will not work for mine. My intention is try to help her and Daniel be successful in their sessions and for him to continue to progress as he has been. I really hope it manifests into a positive interaction and opens up communication and understanding.

Here is the email. 

Hello,

I thought it would be a good idea to share with you some things that may help with sessions. Daniel does not respond as some children do with a reward system. It does not work with him. It can work for a period of time, but it will not last. He does much better with connection than, with reward or withholding. He does not respond to reward he responds to connection. He may actually regress or not be as responsive through those methods.

For him, the show-n-tell is about connecting to you so he can work better with you. He feels that sharing something that he is interested in or cares about and you doing the same with him is building trust and comfortably. It lessons his anxiety and calms his mind in order to work with you. He does not respond to withholding. It confuses him and he does not understand the purpose. It spirals him into confusion leads to anxiety setting his mind into a state of “fight or flight” and unable to focus.

Daniel is very willing to work many days, but with all of these new transitions which are emotional and difficult even for a child who is not on the Autism spectrum, it will take some time for him to ease into it. I will do my part with helping him transition into the way that you prefer your sessions to be, but I will need time and I would like it to be as positive an experience as possible for him.

If you have a suggestion of “connecting” with him in another way before sessions start I would be happy to help the transition from the old routine to yours if you let me know. I can create a social story and help create a new script for him; I have already been working with him about every teacher and therapist being different. The real issue here for Daniel is that he was very much connected with Ms. L and his OT. He has now lost two relationships and people that he bonded with. I know that he is putting forth efforts to try to establish a working relationship with you because if he did not want to he would not respond at all.

Another bit of information that may help is that when Daniel is focused on specific things such as the colors of the checks it is not about that, it normally has to do with confusion – though you have done your sessions a particular way before he has not had enough sessions with you to override the script that he has in his head that Ms. L and I established. He did the same type of routine for over a year that script has been his source of comfort and connection.

He was looping about the confusion of old routine while, trying to redirect himself into a new routine. This caused him to get jumbled in order to try to stop himself from going into a meltdown he fixated. I saw today as a triumph for him despite at the end he was starting to get upset. He achieved a lot on his own; he used his words, and continued to try to communicate with you. That is huge for him. In the past, he would have shutdown completely or gone into a full on meltdown. He was not upset at you he was upset because he felt he tried yet, because he did not get to finish the plan that he had in his mind he was left unfinished, open-ended, any unresolved tasks cause upset.

When Daniel begins to get fixated there are numerous things that can be contributing, he is not being insubordinate. His sensory challenges affect his ability to process and he gets frustrated. This can look as though he is misbehaving or acting out on purpose. He has vision processing challenges reading for him on certain days takes more effort and strain. The weather has changed drastically and he is having problems with sinuses this affects his eyes and his ability to read.

He has auditory processing challenges so when he asks repeatedly what are you saying it is because the words are getting mixed up and confused in his head. He is not hearing them properly. At those times it is best to talk to him slowly or ask him if he understands what you mean. Sometimes it only takes changing a couple of words and he is able to process. With Ms. L they were working on communicating when he was having these challenges instead of assuming that he was being unwilling. The attention was on asking him questions as to why he was having challenges this helped Daniel find words and he was learning to express himself better. I think that may help in the future.

I am willing to give you as much information about him to help the sessions be successful as possible. Please let me know if there is anything I can provide to do that. I am always willing to work with the therapists and follow through. I just need to know what is expected/needed and how we can work together for the same goals.

I hope this gives some helpful information and please let me know what I can do help this transition on my end.

Thank you,
Angel

 

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My Top 10 Posts for 2013 & Then Some …

As I have been trying to look back through the past year, I became overcome with emotion from 2012 into 2013. It was a rough time for me, we had a long stretch of rough times, but it all caught up with me by the beginning of 2013. I have a post that I am working on – trying to polish it up so it will not be so raw. I do not mind sharing when it comes to me, but I need to be a little more sensitive. I want to be sure I do not sound too harsh or something and that I am articulating what I mean to before I share with others. While pondering, I looked at my stats to see what my top 10 posts were for 2013 and overall since 2009. I found it interesting the most popular did not always get the most “likes.” However, I was also surprised at the amount of “likes” that some did receive, I had no idea.

I thought the numbers of visits on each one was interesting too because, I like numbers! 

I was intrigued to see how many ended on even or odd numbers and what they equaled when added together … it was a fun way to stim as I still recover from all of the socializing I did this week. Last night, my dad came for dinner and it was a pleasant evening. I was a little taken aback at how much Daniel attached to my dad. He was very sad when it was time for him to go and as my dad was standing at the door still talking getting ready to head out; Daniel sat there staring at him with the sweetest smile and sadness in his eyes simultaneously. In a way, I felt my heart break because I too have felt that same feeling. I bent over to comfort Daniel and tell him that he would see papaw again when he came back to town the next time. Daniel told me, “I love him so, so much.” Sigh … I am not sure what emotions I am feeling with all of that.

I digress! I shall get back to my point; here are the Top 10 Posts for 2013!

  1. Fear-Anxiety-Stress-Autism I
  2. “I Was Not Raised To Say Good Morning!”
  3. High School Trauma: Road to Recovery I
  4. Autism Cannot Be Blamed for Everything
  5. A Look At Criticism & Negative Self-Talk
  6. My Inevitable Meltdown
  7. I Did Not Expect That
  8. Double, Double Toil and Trouble
  9. Autism & Wandering: My Child & Me
  10. Gifted? What Is That All About?

And here are the Top 5 since 2009! 

  1. Daniel, Me & Empathy
  2. Bringing Awareness, I Am Turning Blue
  3. My Autistic Son Comforted Me Today
  4. I Tried…
  5. Are You Calling Me & Other Autistics Sociopaths? (Think About It)

Well, there is a lot to read.

I am a little shocked at how much I actually have written and how much we all have changed over the years. I hope some of these posts will be beneficial to others. If anything it helps me to see many things that I have worked through on a personal level. I did not edit any of these – my brain is too jumbled at the moment. :-) I would end here, but I wanted to share one of my favorite posts from June 2011 it was a monumental post for me because I started to reclaim parts of me that I had tucked away for years and years. It sparked my desires to write and share my poetry that was more creative and “real” so to speak. It triggered a new openness in my fictional writing and my desire to try to capture the imagination I would not allow out for so long. By allowing myself to paint it opened up more of my way of expression and creativity and reminded me how much the Number 8 & Infinity means to me.

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Happy 2014! Hope Is In The Air?

I hope you all had a wonderful New Year’s celebration and are full of new hope for 2014. I am hopeful at the beginning of this year which, is a HUGE step forward compared to New Year’s Day 2013. I do plan on reflecting over last year, but I have not had a moment to sit down and reflect. Our lives have been a whirlwind of change for months. We have all managed rather well thus far … However; I did almost have a complete meltdown yesterday! Good news, I was able to calm down and work through my anxieties. It was a rough a day though; things would go right then, terribly wrong, and then right only to trickle back to wrong. Daniel was on the verge of his own meltdown, but found his happiness in taking a looooooong bath.

We had plans to go over to my aunt’s for the evening to celebrate and spend time with family.

This was the first year that we were able to stay for four and half hours and all of us had a great time. Daniel did remarkable! He had one moment around the end where he almost lost it – it took me a minute to figure it out. I thought he got hurt because he collapsed into David’s lap. I realized that the noise of everyone laughing had hurt him. I quickly scooped him up ran up the stairs to the quiet room where Ariel and Joshua were playing the Wii. He was able to tell me that the noise scared him and hurt his body. I gave him the choice of leaving to go home or stay for a little while longer until we were finished with the “Dirty Santa” game.

Side note: It took me a while to figure out that game I do not normally participate.

However, David I are really trying to actively involve ourselves with family more and part of that involves doing things that we would not ordinarily do – the positive, it was a pleasant experience and everyone was very kind. :-) OK, back to topic. Daniel made the choice to stay and though he was tired and reaching the point of “too much” he communicated that without reaching a level of meltdown. Today we all slept in which, is a big deal for Daniel and I because no matter what time we go to bed both of us normally get out of bed at the same time everyday otherwise the day is ruined! ;-) He has been very happy today, needs a lot of deep pressure and answers, but happy nonetheless. That is just so wonderful.

Now I shall spin back around again and get to the main topic for yesterday – anxiety.

Bare with me, I am a bit frazzled from serious anxiety yesterday and I am wading through a social hangover. I was nonstop from the moment woke up (around 5 am) yesterday until late that afternoon when my body collapsed on me from fatigue. As I was making food and preparing for the evening events Joshua said out of nowhere, “I am nervous.” I stopped what I was doing and asked, “What are you nervous about? Oh, is it about going tonight?” He said, “Yes, I am nervous about going tonight. I am worried, but I am excited at the same time.” I said, “Oh, me too. We are having anxiety. I always have anxiety about going to see family.” Joshua said, “Me too, I never know what is going to happen, but I know that I have fun. I get nervous about a lot of things like that.”

At this point, I was excited to hear Joshua’s thoughts he has not been able to communicate these feelings so clearly before. 

Before his anxiety would manifest in uncontrollable fixations with certain toys, arguments with Ariel, or him becoming extremely sensory sensitive more so than his normal sensory sensitivities — he is already quite sensitive. It made him feel much better talking about and discovering that I too have these same feelings. Since we were able to talk about it I learned some helpful information to ease his anxieties in the future. However, there is more to this story. As Joshua and I were talking Ariel shared about some of her anxieties about when she tries something new or meets new people, but what she said about family really made me think. She said, “I get anxious about going to new places or meeting new people, but I am not anxious about going to see family.”

I said, “Really? You do not get anxious about going to see family?”

She said, “No, they are family. I know they are my family so why should I be anxious or nervous about seeing them?” I stopped in my tracks and looked right at her then I said without thinking, “WOW! I wish I could be like you.” She laughed and said, “You can.” Ha ha ha There were several things I realized in that moment. I realized that Joshua has anxieties that I was unaware of despite being able to discern he was anxious I was not certain as to what he was anxious about in the past. Now he can articulate it a little more and that helps me to know how to comfort him. Ariel tends to be more like my mom when it comes to relationships and she is not affected by family dynamics in the way that I am. This conversation made me grateful that Ariel does not suffer from the social family confusion that I do.

It seems that Joshua does not either his anxieties were based on uncertainty of how, when, what types of things were going to take place.

My anxieties can be traced back to personal relationships and social confusion. Ariel has expressed her social anxieties to me and they mainly have to do with not knowing how to start or end conversations, how to make friends, what to talk about, and things like that. Joshua has similar ones too. I thought about what Ariel said for the rest of the afternoon. She really had me thinking. Why should I be anxious about seeing my family? I thought about what Joshua said and I could relate so much. I was anxious and excited – his was uncertainty of events not how people were going to treat him. Mine was based on fear of not knowing if I was going to be hurt by people’s words or actions. I have a history of being hurt by certain people in my family, whether it is from purposeful acts or out of my social confusion it does not matter my brain gets overwhelmed and fight or flight rages through my skull.

Yesterday was a little different.

After fatigue forced me to collapse on the couch the only thing that was full of energy was my mind. In my rampaging thoughts it occurred to me that my anxieties this time, was not about anyone in my family I was anxious about me! I was concerned with what would come out of my mouth because I was so exhausted and overwhelmed that I had no filters. When I get like that it is as if my mouth has a mind of its own and rambles on about any and everything. My mind does not catch up until a day or even months later and terror soars through my veins as I think OMG! What did I say? What did they think I meant by that? Why did I say that? Oh, goodness! I didn’t mean it like that at all! Did they think this? I go over every possible interpretation then, I loop in panics about each conversation I had. I was also, anxious because of what I was wearing.

I tend to steer clear of a lot of prints – my closet is full of solid shirts all similar in style.

I have similar pants, jeans, shoes – the “wide” ranges of color in my closet are black, brown, white, dark blue, gray, and white. There are hints of reds, burgundy and hunter green, but mostly black. I purchased a dress on clearance that was a leopard print. I loved it because of the style, feel, and the twirliness of it. (I do like animal prints, but I rarely wear them on my shirts or dresses.) I had wished it was black, but alas there was only the leopard print. I bought it anyway and chose to wear it yesterday. I almost did not wear it because of my fear of being made fun of and I had a slight moment of panic when David responded a certain way that I did not understand. The last time that happened I ripped off the sweater I was wearing and spent the next 20 minutes trying to find something to wear almost in tears.

Needless to say, I will NEVER wear the sweater that he made a comment about no matter how many times he tries to explain it to me.

I cannot now I have a negative association and will have to give it away. Since, I understood what I was actually anxious about I was able to share this with David. It helped him to understand and have some compassion for why I was acting the way I was all day. I cannot say that it made me all calm and peaceful, it did not. I went to my aunt’s house feeling grumpy, but angry with myself because I did not want to be grumpy. I was so out of it my sister told me that I looked good and I thanked her, but then she said, “You look fantastic by the way” and I looked at her with an icky face and asked, “Why do you say that?” I have no idea why it even came out of my mouth. She was referring to how much my body has transformed in the last few months from working out. I apologized and told her that was not what I meant. I explained my day and I was frank with everyone telling them that I had no filters!

They were going to have to forgive me upfront because I had no control. Ha ha ha 

It worked out well. My aunt was having her own set of anxieties and feeling overwhelmed we shared in goofiness. At some point, my sister got me laughing so hard that I got the giggles and continued to get them all night long over the silliest of things. That is fine with me – laughing at silly things is much better than, being grumpy and feeling foreboding fear of some phantom thing. I do not do resolutions; I make conscious decisions to transform myself when I feel that I am ready to do so. I made a lot of transformations in my thinking and life last year; I plan on continuing to do that in 2014. I have a lot of hope for this new year. Part of yesterday was the beginning of me transforming my mind about family and how I can communicate to them so they know why I may be acting a particular way or why I say certain things. It helped that I had another positive experience with them to help my mind the more of those better.

Possibly one day I will feel more like Ariel feels about seeing family. :-)  

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Cultivating My Own Support Network

There are people who have had great support from loved ones and friends throughout their life. There are those who have managed to find support to help them, such as finding groups, forums, meetings, organizations, and/or through their religion. I have not had that — my life has been rather lonesome and self-reliant. Though I do not want to say I have not received any support from friends or family, I have. However, it has come at a cost — many times I found that my needs were not actually met. I ended up stuffing my needs out of guilt, shame, or obligation. I had to be ok. I had to get over whatever I was struggling with because others needed more support. Or what I was going through was not “as bad” as what someone else was going through.

It felt as if I was either ignored or that I was on some sort of check list for them, and once they felt I was ok, they could move onto their next thing.

It feels very invalidating and because of this, I’ve grown accustomed to doing things on my own. I had to learn as a child to take care of myself and others. My emotional needs were not a priority to the adults in my life. My basic physical needs were met, but many times accompanied with guilt for needing anything in the first place, unless it was the holidays/birthdays. During those times, I was showered with gifts, but there were also times when I hated getting gifts because I knew that they would only be used against me at some point, if I did something wrong or if I asked for something during the year. I am not sure why I expected more support from my family when we discovered that Daniel was Autistic. I am not really sure what I expected at all, other than wanting to talk to them about it, for them to want to learn about it, and try to understand it along with me.

I did expect for people to listen to me, allow me speak about my concerns, and share in my enthusiasm at discovering answers.

I didn’t get that, mostly I received silence and condemnation from my spiritual community. I felt ignored and isolated. I felt as though Daniel was nonexistent to people. I felt alone and questioned myself on many occasions. What if I haven’t prayed hard enough? What if I wasn’t doing enough good in the world? What if I was causing my son to be Autistic? (Technically, I guess you can say that I caused my son to be Autistic since I am too. ;-)) Why did my family refuse to talk about it? Why did people think it was evil? After years of feeling such tremendous fear and pain, I noticed a pattern: everyone in my life was being consistent — except me. The reality of my life is that I have been my strongest and most consistent emotional supporter. Many of the things that I have accomplished have been done on my own. This does not mean that people have not been there and provided the means, resources, or encouragement, but the main source of support that I have longed for has been emotional support.

That means a person’s time, listening with nonjudgmental ears, an open heart and mind, people who make it clear that what I am feeling and who I am matter.

That comes from relationship and connection – that type of support I have had to provide on my own. It took me understanding that in order to move forward in seeking out how I define and need support. I had to accept and understand myself before I could look to others. I had been doing it my whole life, but I never trusted it. I had this lurking feeling that somehow I was wrong for being able to support myself. I watched as people would have people in their life rally around them and no matter how hard I tried I could not keep friends or have that same connection with my family. I did not know what support looked like for me, but I knew I had not had the same kind of support as I witnessed in social settings. Even if I did receive any sort of emotional support it was invalidated by my confusion of actions/words not being consistent, abusive relationships, and/or constant anxiety and depression.

Many times the things that people did as acts of support I found hurtful.

I am different from many people when seeking emotional support. (or maybe I am not?) I do not want physical hugs, I do not want to be touched, I do not want to hear “I love you”, I do not want to be surrounded by people when I am seeking emotional support. It helps having distance with people for me, but I desire to know that they are there. My goodness what do I want?? How is anyone supposed to know? That is what I am still working on, but I can say that it is important to me to feel validated and heard. I also, grew up living to support other people. I grew up trying to make everyone else happy. If I made sure they were happy then, life was calm. If they were not then, life was chaos. In doing this, I learned that my emotions were less. Throughout my life when I had tried to express my feelings, share the emotions that I was feeling seeking that emotional support I felt invalidated and even felt shame or guilt for feeling them.

I learned over time to stop sharing all together.

I learned to stop trying to ask people for support. My ways were not their ways and I was expected to feel grateful and satisfied with the way they gave me support. When I attempted to share with David I was encountered with similar responses until I finally gave up, as I had done with every person in my life. Again, I found myself relying on me for my emotional support. When I felt too overwhelmed I found myself stuffing my emotional needs. I have done that my whole life too. I have the ability to live long periods of time ignoring my emotions or dismissing them devoting my energy to everyone else around me. However, this is very damaging and the emotions eventually come blasting out through meltdowns or I internally implode into shutdowns. This is another reason why I started a blog; I was desperately seeking support – any support.

I wanted someone to be there and let me know that I was not alone in my feelings. 

Over several months David and I have learned to work on our emotional responses. We understand that they are ok, as long as we are not manipulating or trying to cause harm to the other person. Understanding emotional responses has helped me in my expectations with others. I have more awareness of trying to understand them, I am listening and observing with new insights because I now understand that people react for the most part because of their experiences. In observing people’s emotional responses, I have been able to discern what types of people are good for me to try to establish relationships and those who cannot be in my support network. Before I had allowed everyone in then, I eliminated everyone from my circle; now I am able to see a bit clearer and know that there are some toxic people out there for me. There are people who I connect with and are good for me as well. At some point, I had accepted that I was wrong if I did not fit into the “autism mom” groups. 

I felt wrong if I did not fit in with my fellow Autistics. 

I felt wrong for not fitting into my family. I felt wrong for not having friends. All of that was a motivator that caused me to force myself to try to fit in only to feel even more isolated in midst of people. I am not going to lie, it hurts. Even as I type these words out my heart hurts and tears kind of fill my eyes. However, I need to go through this because it helps me to understand that I cannot just pick anyone to be my emotional support. I cannot have people who do not build into me emotionally and/or siphon me for emotional support — they have no desire to have my kind of support. I have had people come along and help me, love me, hold me up, but not for long and like I said earlier, it usually came with a price. I am thankful for those people, but I had to do the work. I was not able to share with them honestly without consequence.

I sat in silence much of time because:

  1. I did not know what I needed.
  2. I did not know what support actually meant.
  3. I was so used to doing things on my own that I did not think about it.
  4. Past experienced proved time and time again that people only gave me the support they wanted or assumed I needed.
  5. Past experience gave me the perception that if I needed support that I was weak.

There are more reasons, but I think you get the point.

After struggling with feeling so alone with trying to find help for Daniel and trying to understand autism, I gave up on people in my “real” life. I looked to the internet to find others like me. I sought people who understood and appreciated my challenges, pains, and talents. I have slowly built into myself, but much of that came from the positive experiences and acceptance that I have received online. Through my virtual life I have been able to gain a more positive perspective about myself through the life experiences that others have shared and some of the friends that I have made online and continue to make. I know that I can go online and find people who have gone/are going through what I have or similar experiences and that helps me feel connected.

I can only take so many social encounters.

However, by cultivating an online network of people, I feel supported, understood (most of the time), and vulnerable, but the relief that comes from knowing others understand what I am sharing is worthwhile. Even when people do not understand but simply “like” or give a virtual hug or something, it helps. I try to do the same for others and support them as much as I can. I think even if someone does have a strong support network with family and/or friends, they can still have moments of feeling alone and misunderstood. Reading and sharing with our community has been a large part of where I find support.

I am using support in the context of,

1. to give aid or courage to
2. to give approval to (a cause, principle, etc.); subscribe to to support a political candidature
3. to endure with forbearance I will no longer support bad behaviour
4. to give strength to; maintain to support a business

I am thankful for the passion that ripples through and the tenaciousness of the Autism community.

It keeps me motivated to stretch my mind and change for the better. It helps me realize that all of us need support differently. During our Autism journey, we have needed a lot of support financially, physically, and emotionally. People have come and gone who have helped us with each of these. However, I found that I am capable of providing a lot of that support for myself. But I definitely need people in my life and I do need encouragement, reassurance, validation — I still need support. I started to create a support network that fit for me. When things seem to be going downhill and crumbling around me, I have found that being able to go online and to see this network flowing it gives me hope. I do not always communicate directly with people, sometimes reading their words is enough to give me a boost. Then, there are other times when I feel left out and disconnected.

That disconnect has enabled me to see how I can support myself and communicate how I need support from others.

I am still learning, but I am getting better. It is interesting that through this past year when I stopped seeking support or understanding from family that they have slowly started to talk to me about autism. I still do not expect anything, but I am happy that they are not being silent. I no longer feel that Daniel is being ignored. I feel validated at times when they ask me questions and no longer dismiss me or change the subject. I understand that I cannot seek support in the ways that others do. I will not seek out groups anymore — it is not for me. I will not discuss on forums — people can misunderstand so easily. I will not try to be friends with every ASD mom — some may be a good fit and others may not. I will continue to seek support in the ways that suit me. There is nothing wrong with how I need support.

I see with more clarity how to ask for the support I need from the people in my life.

I do not look to others to provide my emotional needs that does not mean that I do not need it. It means that I am better at seeing what emotional needs I have, how I can help myself, and when I need to ask others for their support. I accept what they are capable of giving and that is enough for me. I accept that people need time to process. I think that some of the people who seemed so unsupportive in the beginning were in shock, denial, or were confused and misinformed about autism which, made it difficult for them to know how to respond or support me. I do have hurt and feelings of abandonment, but I am healing and I can understand.

I actually think that overall learning how much I can do on my own has been a real eye-opener.

It has built into my self-esteem and gives me the confidence to keep stepping out trying to achieve things I never considered before. I do not deny that I feel incredibly lonely at times, or that my mind wanders in sad thoughts about not having friends and family like other people do, but maybe it is all about timing. Possibly, I needed to accept myself and learn more about relationships before I could establish real life relationships? We’ll see. Each person has to define their needs and how to actively gain the support they need — some of us need help in learning how to do that. :-)

Related reads: 

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Too Good To Be True?

I am glad I wrote out my thoughts yesterday it helped to clear my mind and ease some of my “meeting new people” anxieties. I had not planned on writing about our social experience yesterday, but there were too many fantastic things that happened – I really would like to. Plus, I am extremely frustrated with my inability to finish my last post from the series 5 Actions That Gave Me Hope About Autism. It is about cultivating my own support network and I am struggling with keeping it focused. I think I am over 2000 words. However, it is 2000 words of scattered thoughts not flowing cohesively. I want it to be shorter. Urg! Aaag! Ug! Those are my most scholarly of words that describe my frustrations. :-)

I had my normal social anxieties about going to a new place and meeting new people, but something felt different. 

I was not in a panic or overly concerned with how Daniel was going to respond. I think there were multiple factors, but one major factor was that David was at ease. He has been a source of my “enhanced” social anxiety (obviously not the source) in the past because of his own social anxieties. It has been a long time since he has found anyone that he could relate to and all of my efforts of trying to get us connected with others in the past were not successful. There are many reasons for that the simplest of reason, “not our crowd.” I can find topics and things to speak with people if I am put into a social setting I have learned to do that through family situations and as a means to cope – I learned to mirror rather well. David either connects or does not – he has no patience for certain types of people. He is not mean; he just does not waste his energies.

I am intrigued by all people and the more I do not understand them the more I can get fixated on the why’s and how’s of their personality. 

Unfortunately, my attention can be for investigative purposes. I know that can sound awful, but it does not mean that I do not care about the person it means that I want to understand them which, is different from wanting have a relationship with them. If I like them and we have common interests I spend my energy on a relationship. I have to categorize people as possible “friend” or “interest” so to speak because if I do not I will friend anyone and find myself in a load of confusion and hurt. Does that make sense? I know I am off on another trail … I digress. I will get to it. I found it interesting that I was so calm; many times going to someone’s house who I have not met has induced panic resulting in me hyperventilating and all of the other fun things that accompany a panic attack before we get there. I wish I could say that has only happened going to new places it has not.

Family events have induced ripples of panic and meltdowns in me – possibly more so than, new experiences.

The kids were excited and a little anxious, but again it was normal anxieties of something new and not knowing what to expect. It was very comfortable in their home. His girlfriend was not home yet, but his children were there. He has three children two girls and one boy very close to our kids’ ages. I felt nervous about how everyone would respond toward Daniel. I never know how someone will respond to his need to explore their home and wander about. We have had many people act ok, but the foreboding uncomfortable feeling would consume me. I did not feel that yesterday; the environment felt, hmm … open and welcome. I believe those are the words that best describe the feeling. He did not blink when I asked where he got his kitchen table as I bounced in the chair and rubbed the table top. Maybe he did not notice, maybe he did?

I am bouncy I cannot help it. 

I cannot recall a whole lot at the moment because there was a lot of talking, children laughing, and other noises. However, it was not too much my brain is still processing though and I feel a bit of a social hangover. The conversations are swimming and splashing through head. I do recall how wonderful I felt seeing the kids interact and play with his kids. They played video games most of the time, but it was really good. His youngest daughter had me laughing so hard. We ended up playing a couple of games with her and I thought that was fantastic! There were several things I was overjoyed with not only because it is great progress for Daniel, but most importantly that Daniel felt comfortable enough to do them. He did not rely on me to ask questions for him. He spoke directly to the kids and to the adults.

He did not require me to walk around with him the entire time. 

He remembered names! This is huge! We all struggle here with remembering people’s names, but Daniel has a difficult time even remembering family that we are in contact with. He confused the names, but then got them and called the boy by his name to ask him a question. There was a moment when Daniel and the boy were outside playing with some sort of toy gun thing, I had to keep an eye on Daniel because he has no awareness of the danger. If he sees something he thinks is interesting he will run into the street without a thought. As I watched them I was so happy for Daniel. He was interacting and having fun with another boy close to his age. He has never had that experience. The boy was very patient and did not treat Daniel any differently.

This was the first time that has ever happened. 

All of his kids were great they welcomed our kids. They shared with them and treated them so kindly. Our kids have only had limited interactions with their peers and several of those have not been the most positive. They have had positive experiences with some of their cousins, but outside of family they have not had many. It has been a challenge trying to find friends for the kids – for all of us. I was unsure how the kids were going to feel after all of that excitement. They tend to exhaust all of their energies while socializing then, we get home and it is meltdown mayhem. It was not like that, it has not been like that. Everyone is happy and strangely calm. This is not what normally happens so my hesitation to celebrate is a little delayed.

There were no issues when it was time to go. 

Daniel set his timer and was ready when it was time. They did not want to go, but they did not get upset about leaving either. That was the positives with the kids. There were many more positives that happened too. I was actually able to talk. I did struggle getting words out at times, but I managed to stay engaged. I had fun. I was very excited when I met his girlfriend because we have so many common interests – there are too many to list, but I was ecstatic to be able to talk to people who understood things about food, the mind, psychology, neurology, AND synesthesia! I did not think and blurted out that I have synesthesia and then, realized that I should probably reel it in and not go into great detail about what I experience.

I have not had people be so accepting and open – it felt like a sigh of relief. 

David and I had given up much hope of meeting any people who we could relate to in the “real” world. I live mostly in my virtual world. It was nice to have this experience. For our family, there are so many things that need to click in order to be social. We have to have specific requirements not that we necessarily want to, but we have to. Even though that is true there are two things that can trump many and that is people who are open-minded and accepting of differences. I am sure many people who are Autistic homes can relate to what I am saying. The people can be great, the environment could be set up to perfection, the words could all be “right,” but if there is lack of acceptance and open-mindedness it will inevitability fall apart.

I find myself thinking this is too good to be true.

I do not want to think that way, but when you have been sideswiped with rejection because of your differences and/or child (ren)’s differences you can feel the need to keep your guard up. I do not truly feel that I need to –  this is my brain’s  automatic “fight or flight” response due to past experiences. However, my overall mental state is of peace. We had a lot of fun. We enjoyed ourselves and enjoyed the company. It was nice to experience that and to see our kids have so much fun. It was fabulous to see that our kids are quite “normal” kids. I mean they do normal kid stuff, have fun, are loud, silly, bouncy, etc … That is good to see. I am glad we went and I hope we can do it again. I confess, I did wonder if their tree was real so I got up close to it and smelled it. I saw that it was not real. This would have been my own little secret, but nope I blurted out as I was saying how much I liked it, “I smelled your tree to see if it was real.”

Not sure if that was too weird or not.  :-) 

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Improving Physical and Emotional Environment II

Continued from Improving Physical and Emotional Environment I

Since I have been able to accept, process, and work through healing from some of my past abuse I have been able to explain to David how words, actions, and behaviors affect me. Before, I was unable to gather words to speak to him. Part of that has to do with his personality, but it also has to do with my inability to know or share what I am feeling or why. This bit of information helped me to understand how much Daniel was feeling unsafe in his environment. Like many things, I had an understanding, but it had not truly registered. Daniel has been unable to communicate his sensory struggles, feelings, triggers, people, and situations that cause him to feel unsafe. He did not feel emotionally safe in his environment for a long time because it has been and still is difficult for him to understand his emotions, our emotions, or reasons for people’s actions.

But the greatest obstacle has been his physical environment.  

I am at an advantage in the sense that I have more experience with emotion and time interacting, observing, and analyzing to create some sort of conclusions about what people are doing and why. He does not have that what other people take for granted such being able to read body language, tone, expressions on faces and applying that to a situation or emotion does not come easily for us. I have practice and I still get confused. He has relied heavily on his physical environment to be a safe place, however; he is extremely sensory sensitive and is dependent upon his routines to bring peace. He can understand his environment and he expects it to be reliable. If it is too stressful of an environment he cannot function. In other houses we have lived in the sensory aspect was too overwhelming which, caused him to be in a constant state of anxiety and “fight or flight” mode.

This hinders anyone’s ability to process information.

It can enhance triggers, sensory sensitivities, induce irrational thinking, feed anxiety and create unrealistic fears. He looked to me to be his stability, his filter, his voice and many times I could figure it out, but not always and my fears, frustrations; exasperation at times did not help. He had looked to me for his nine years on this planet and I have done my best, but some days I have no understanding for him or myself. In order to help with that my mindset changed from feeling like a failure or wrong, to accepting that sometimes the only way to help is to sit in silence bringing as much comfort as possible. That helped change both our physical and emotional environment – acceptance often does.

Last year, when I got to my breaking point and knew that I needed help I realized what an accosting environment we were in. 

I blamed a lot of it on the house we were in; which is not too far off, but it was not the only reason. Around March, something in me changed and I was no longer going to allow myself to fall into the negative loops. I did seek help from my therapist she confirmed that my environment was “unsafe” and that I had to make changes in order to function in a healthy way. I decided that I could no longer allow my environment to feel unsafe – it was destroying me mentally and physically. I finally, came to the conclusion that I had to take control and create a peaceful environment for the kids and myself, as much as I could in the house that we were in. Part of my hindrance was feeling that I was not and could not be in control. Depression, anxiety, and continued PTSD episodes kept me in a state of fear – I could not think straight.

This is where I would like for people to take a moment and ponder, what I am describing is not uncommon for Autistics. 

We can live in a constant state of fear, anxiety, depression, PTSD, heartbreak, trauma’s, etc … and still look as if nothing is wrong. We have learned to adapt, maybe not in the best of ways, but we have found ways to cope and survive in unsafe environments and we still accomplish a great deal of things. I want to express that because in my case people tend to think that since I am not showing certain emotions or talking about them that I am fine. They look at me and think that I have no problems, worries, or struggles while I sit and whither in excruciating isolation, fears, anxieties, and pain silently before their eyes. If I do not feel safe I cannot talk or show my emotions – I shutdown.

I would venture to say that many people can empathize with what I just wrote, Autistic or not …

Much of my ability to change came from applying mindfulness each day and getting out to exercise. Some days I was swallowed up in fears and anxieties, but over time I have been able to take control by reminding myself to “stay in the present”. I try to do this daily so my mind will not wander into the past or the future looping into anxiety. It has helped me a great deal, but I will always struggle with my looping, persevering, and yes, at times fixated mind. :-) Because I changed my thinking from fretting about what I felt I could not do to looking at what I could do in the now - it helped me to help myself. By doing so, I understood the importance of creating that for everyone in our household. However, during that time Daniel and I were the only two who did not have “safe” places to retreat to hence, no matter how much I tried we never felt safe.

It was a difficult task, but I worked with what I had.

Since moving into our new home Daniel is the happiest and calmest that I have ever seen him. He has never transitioned from a move like this and I am amazed at how much his verbal communication and social interactions have increased in only a few weeks. I am not really amazed; I knew that the other house was a sensory nightmare. It was also, a financial and physical nightmare because we never knew what was going to break or when someone would just show up. Every time we have moved I have analyzed Daniel’s behaviors comparing our previous house with our current one. In all circumstances, Daniel has shown the greatest amount of progress with less moments of regression in areas when we are in homes that have carpet, lanolin floors, solid muted colors painted on the walls, and very little decorations.

ME TOO! 

My apartments were all very minimal in color and flare – simple, solid colors and not much on the walls. It brought me peace. This home seems to be a perfect mixture of simplicity and absorption of acoustics. There are not many unexpected random noises. The windows are not too big causing constant distraction and buzz. Another noticeable factor is that this is the first house where we are nowhere near power lines. The vibrations from those even affect David. In our physical environment I have had to adjust and accept that I indeed do not like stuff or colors on my walls. I like everything very minimal. If I do not have that my brain feels constant static. That feeling keeps me in “flight or flight” mode – it fuels my anxiety.

My mom is an Aspie and she is the opposite, she feels calmer with a load of colors and a decorated home. :-)

I appreciate that about others, but I cannot live in it. We are finally at a place where our lives have some emotional stability. It has manifested a more balanced environment. I asked David a couple of years ago if he would just “be my friend” I have another post that I am writing to share about that, but the main point is that I do not feel safe emotionally in a romantic relationship. By him agreeing to us being able to get to know each other as friends it has allowed me to be more open with him and for our relationship to develop naturally as two people being friends. We got married within a few months of meeting we did not have time to really get to know one another and I never felt safe.

It has helped me to feel safe enough to explore and accept myself more.

We have discussed it quite a bit and have concluded that we cannot compromise on our living conditions ever again. The homes in which Daniel was constantly overwhelmed, raging with anxiety/fears, compounded sleep issues, causing aggressive behaviors and inability to communicate had certain things in common. Now we know some of these important factors and we will go to great lengths to ensure that all of us have a safe emotional and physical environment. By understanding and accepting how much our environment was causing us stress we were able to make the changes needed to improve our physical and emotional environment. This is not always an easy task; it will be something that we have to work at for the rest of our lives. Environment has the ability to help someone achieve their utmost potential or cause their talents, identity, and personhood to crumble. It is valid and a very important part of a person’s life.

By gaining this perspective I have been able to find even more positive things about Autism and how we can achieve great potential in the right environments. 

More things I read. (In case you are new reading my blog, WELCOME! also, I do share quite a bit of things that I read. I may not agree with everything, but I find good information from all different perspectives. My sharing does not always mean an endorsement. I share as kind of a resource guide.)

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Improving Physical and Emotional Environment I

Most of us are aware that our environment can have a huge impact on how we feel, respond, and communicate. I know this, but many times I tend to forget. In the past, I was not so aware and it caused serious confusion. It was confusing, frustrating, and at times frightening as my body, emotions, and certain responses manifested from me when I had no idea what was causing it. Now I have an understanding of my own challenges such as, sensory processing disorder, synesthesia, executive functioning disorder, anxiety, depression, PTSD, social confusion, and learning about how my brain processes. (I can keep listing, but I will stop there.) My brain consumes all sorts of information, details, and emotions with the inability to discern what is important and what is not.

Everything is important!!

This does not include all of the underlined or things hidden to my conscious that my mind is processing.  It collects everything thinking it’s all very important. So it files it away until a sensory, emotional, or PTSD trigger causes it to manifest. I have witnessed similar things happen to my kids, especially with Daniel. Because of his developmental delays, his ability to understand and process his physical and emotional environment can be even more confusing, frustrating, and frightening. I am still learning how much my environment affects me. With new understanding, I have been making changes to improve my quality of life – by doing this, I have gained much more self-acceptance and understanding. This allows me to communicate better.

It can still take some time for me to understand and find the words to explain to someone how I am affected or feeling.

I have been able to discern many of Daniel, Ariel, and Joshua’s challenges. I find it easier to observe and discern what children are feeling, I have always been able to do that. I also feel connected to my kids so that makes it easier for me to “read” them. For most of my life, I have been disconnected from myself. For Autistics, the world can feel “unsafe” as there are so many unexpected things. For instance, our world can be accosted by sound, a voice, an inability to recall direction, unfamiliar surroundings, faces…all of what feels like chaos can ensue “fight or flight” responses. I have come to realize that most of my life has been spent in “survival mode.” I had to stay disconnected from myself to protect myself.

If our environment is not safe, we are in constant defense mode.

Our homes should be our safe place but it is not always the case. After reading from many other Autistics, I believe that we are resilient and find ways to help ourselves in the midst of what feels like constant battlegrounds. In hindsight, I realize that when I did not feel safe in my environment, my OCD traits manifested and my routines were unable to be changed. My anxiety levels became heightened, depression overwhelming, and my special interests became obsessive to the point of becoming all consuming. When I lived on my own, I was able to have the safety of solitude and no one else’s energy or challenges disrupted my downtime. When I am able to have downtime, solitude, and a safe place, it is not has debilitating when my routine is disrupted.

I am not going to say it does not cause me problems, it does; however, I can regain my balance sooner if I know I am not surrounded by “threat.” 

A safe place for me means an environment that is familiar, steady, comfortable, trustworthy, reliant, accepting, nonjudgmental, peaceful, and quiet. When I was a kid, I would surround myself with my stuffed animals while listening to music or audio books. Physical surroundings play a huge part in how I am able to process information. Not only do my basic five senses get overwhelmed easily, but my emotional sense is so heavily connected to them and my memory that I can relive past experiences of social, emotional, and physical situations with a familiar smell, a light fixture that I have seen before, or a song.

I have a feeling that many Autistics share in this as well.

This emotional sense can cause me to feel another person’s “energy” (I am not sure what else to call it), but I can walk into a room and be consumed with all sorts of emotions from the people in there. I also absorb the emotions of people while reading their words. This causes me confusion, jumbles my brain, and makes it even more difficult to interpret what people are communicating verbally and nonverbally. This is why I am so protective of my environment – for my sake and for my kids. They too feel these same effects. All of them are highly sensitive to emotion and their physical environment. There comes a point where they must be exposed to different things, just like me. We cannot be completely shut-in and we are not. To ensure that we can go and experience this world, I try to keep our home as safe and calming as possible.

The major component in creating a safe physical environment has been dealing with the emotional environment first.

Just as many people, David and I have been under a tremendous amount of emotional, financial, physical, and spiritual stress throughout our entire marriage. Little did we know that even before our marriage we had accumulated layer upon layer of stresses/stressors. They were all sorts of dynamics, faulty thinking/perceptions, ideals, fears, etc … that were unknown, not understood, and/or never dealt with. Yet, they creep up whenever trauma or stress arise. This is not uncommon among many people. The difference is that most people do not loop, analyze, fixate, internalize, meltdown/shutdown, or go into utter panic because they cannot make sense of another person’s behavior.

I am describing myself with all that.

David has his own moments, though he simply manifests them differently. It would seem that based upon several things I have read from Alltistic woman who are married to Aspergers men, his attitude and behaviors are very much in line with characteristics described by them, making it seem as if he is indeed somewhere on the spectrum. In his own unique way with common traits, we say that we are “Opposite Aspies.” We tend to have a commonality when it comes to an analytical way of looking at things; however, we are very different in how we process emotional thoughts and conceptual thinking. We had very different lives growing up and very different experiences. His world confused the heck out of me and he assumed he understood mine. There are many factors as to why our home environment was emotionally unbalanced – I am not going to go into the details in this post.

In a tight little nugget, we can say much of it is about communication.

For several months, we have found ways to communicate that help us to understand the other person’s challenges or reactions…maybe not always, though that’s true of any relationship. The lack of understanding or inability to communicate adds a huge amount of stress. It makes me feel like a failure and upsets me because I feel forced to be mean and speak directly, which can be hurtful. However, from my perspective his way of communication can be hard, invaliding, and insensitive – although, he could say the same of me. ;-) This is where the needs of each person’s emotional environment needs to be taken into account. In a relationship, there needs to be compromise, but how do you find compromise if one is nonverbal or loses their words?

How do you find compromise when one person works through their process through talking and the other needs quiet and to be alone?

How do you have compromise when a person cannot discern what they are feeling or why they are feeling something? How do you create a “safe” emotional environment when communication is distorted through inability to understand one another? I have no answer other than David and I are willing participants in learning how to find compromise and create a safe environment for all of us. It’s taking a lot of work, but we are willing to do that for our kids and each other. The stress and anxiety of being misunderstood or forced to speak when I’m not ready makes my emotional and physical environment unsafe. This has been my life – a constant state of feeling unsafe. I found ways to cope, mask, hide, escape, but they only lasted so long before my inevitable breakdown or my other tried and true means of coping: creating a world of seclusion to protect myself.

Thankfully, throughout the last few months I have been able to explain to David how I have felt unsafe. 

Continued Improving Physical and Emotional Environment II …

Sharing some reads … I feel that my inability to regulate emotions comes from multiple sources: Aspergers, SPD, Synesthesia, which has been influenced by abuse, PTSD. I am sure many things connect, collide, and get all jumbled causing some issues in that area for me.

 

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Urg! Awwg! Bleak! Blaaak! – Mind Work!

I had to get that out. This week has been a whirlwind and I am frazzled. My executive function is basically null and void … more so than, usual. I completely forgot three of the boy’s classes. I had to reschedule a couple of them. I have lost track of time, days, papers, and fatigue swallowed my body on several occasions. One culprit that started this happened last Monday when Daniel’s speech pathologist quit all of the sudden. It started with that, but through the last two weeks other things contributed. Joshua’s OT was supposed to start on a certain day – it had to be rescheduled because of license issues.

The Y cancelled practically every one of my classes because of weather conditions. 

David has had meetings with work and has gone to several meetings, conferences, social media pow wow’s this week. David being social is all kinds of new. I am happy that he is meeting people and getting out, but this week he has been gone a lot AND it has been on my workout nights so … the classes that are now back in session I have missed. My routines are all out of whack, Daniel’s routines are all out of whack, Joshua’s routines are all out of whack, and David’s routines are all out of whack. I like saying “out of whack.” Ariel is doing fine and dandy when all gets to be too much I can find her curled up with a book in bed with Nathaniel the cat who is a little perturbed that we are messing with his daily schedule.

He has to patrol the house, checking on things and us ensuring we are not up to something, you know.

I suppose, stress is getting to me. Next week is the end of the semester. Ariel and Joshua look to be completed by Monday, but Daniel has had a few rough days. He is doing such an amazing job at trying to get his work complete. He is handling the new SP well, but it is change. I have a difficult time connecting to her; she is stone face when she talks no emotion or enthusiasm. Nothing against her I am just not used to her and she is very different from the last SP. In their “get to know you” session she put a worksheet up with a list of questions that he was supposed to answer about himself while writing it on the computer. I was delighted that he tried to do it and did not lose it on her, but it was too much for him.

He was starting to cry and get frustrated.

I stepped in and told her that he has never done anything like that before, he has OT goals, but they are not even close to being there and though he likes the keyboard he is not able to do that on his own either. “I am his scribe.” She quickly changed her approach, but the frustrating thing is that she has not asked me a single thing about him or what he and his last SP were doing. I do know that she just got a huge workload handed to her and this is only her first week, but he’s my kid. I know that trying something like that with him on the wrong day has the potential of ruining any sort of session with her ever again. One thing that causes him confusion, fear, anxiety, etc … and he could be done – forever! :-)

I really hope getting this stuff out helps me.

I do not want to miss great things that are happening or have my joy sucked out because I cannot get back on track. I need my routine to go back and gain my footing again. Once, I lose my schedule chaos sets in and I feel like I am falling down a giant pit. It does not help that I am struggling with symptoms of depression even though I do not feel the heaviness and angst of depression as I used to. The thoughts wiggle into my brain, I am able to move forward, but somehow it feels like I have gone through a tremendous battle without my knowledge. I have no idea if that makes any sense at all. I just want my mind to stop being fuzzy and chaotic  - mind work!!!!

I have been working on another post for two days and it is frustrating me too.  

I cannot get the words to become fluid. I keep getting sidetracked in all sorts of studies and other research. BUT what I really want to do is sit for hours and watch all of the Sherlock Holmes that has ever been created. I want to read the stories along with them. I want to be Sherlock Holmes!!! (Without a drug problem. ;-)) Blah! Eeek! Yaaaa!! Alright that is enough of my shenanigans. Sometimes I just need to virtually yell, screech, and howl. I feel a little better. Hopefully, my Kravfit class will not be cancelled tomorrow and I can beat the crap out of some punching bags or use self-defense on someone. Ha ha ha Because I was feeling so “blaaaakk!” I decided to make the kids and I cakes in a cup. I am now off to stuff my face with chocolate cake (hoping I do not get sick, but I most likely will) watching the kids stuff their faces with chocolate cake enjoying a fun night together.

Cup of CAKE!!!!!! 

Recipe I used Cake in a Cup Gluten Free 

I am not going for presentation we are eating it right away!

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Going Down As One Of The Great Days

This morning started off awful. From the moment Daniel woke up it was meltdown mayhem. This post is by no means going to be complaining about what took place. I have been waiting for it to happen any day he has does remarkably well with everything that has gone on the past two weeks. However, it is exhausting and when I have my own issues along with trying to manage everyone else around here I do reach my limits. This morning was two hours of nonstop meltdown and I could do nothing to help Daniel. I think playing in the snow yesterday pushed him to his brink. This morning when he could not find his thermometer to check the temp outside there was nothing that was going to ease his frustrations.

When I could not find it and we had reached no resolution, he just went to his room.

He went to his room! He has not done this before. Usually, when it reaches that point his day is ruined. He can find calm, but he will still be on edge and practically anything could trigger him. It is still very difficult for him because he is not able to communicate all the time what is upsetting him. He seems just as surprised by his emotions as we are at times. He does not understand the toll that all of the sensory/emotional/social/everyday processing has on him. I still struggle with this too. When you are having fun or just living life you do not expect it to be so trying. It is hard to remember and realize how much processing your brain is doing – many people do not seem to need to worry about that.

This week, just as last week his school schedule changed.

He lost his speech pathologist, who he loved dearly; though he has accepted that she is no longer with the school he still does not understand why she left. He is affected by not having his regular sessions. He has also, been doing a lot of school work because he is a few lessons behind. I have had him get ahead on the subjects he likes so we can spend extra time on the others. It snowed and that has him in all sorts of excitement and anxiety. The temperature change affects us; our bodies do not regulate temperatures very well. The cold weather is hurting me terribly. He played out in the snow which has been a new sensory sensation for this year. He loves it, but he has no comprehension of when he is too cold so he does not understand why I will not let him play outside for 8 hours.

There is more with the excitement of Christmas coming and school break lingering around the corner.

There is just so much for him to be thinking about and processing through. When he hit his limits this morning, I understood the why’s I only wish I could have helped him in some way. But it needed to come out. He needed to decompress and reset. After a while of being in his room with the door shut, he came down and said; “Mom, come here I have something.” I followed him up to his room not sure what he was going to show me. When he says that it usually means that he wants me to give him something that he knows he cannot have, like a light bulb because he wants to break it and see how it works. :-/ Not today; today he showed me what he had “created.”

He said, “Look what I made! It is a home. The pink carpet is the water where my turtles live. This is where my kitten lives, under here is where Pooh Bear lives, and Elmo lives here. This is where my penguin lives, this is snow and Tigger lives here.”

I asked him if someone had showed him how to do that or if he created it all on his own.

He said, “I thought of it all myself and created it myself.” Through it all he was smiling and full of giggles. No one would have known only thirty minutes earlier he was in tremendous distress and inconsolable. Since we have moved into this house Daniel’s meltdowns have lessened. I am going to write a little more about his struggles when I write the post about environments and how much it affects our lives. However, I wanted to share this for a few reasons. I was hoping to give people some insight who may not understand why meltdowns occur. They are not because an Autistic child or adult are throwing a fit. There are reasons for them. The reasons are not always so clear and can seem sudden, sporadic, and may be triggered by something that seems trivial to others.

They are not they can be complex and layered.

If someone is unaware of how things can affect an Autistic person, they may not consider how traumatic it can be if their routine is suddenly changed. For me change equals chaos. Everything that I knew a moment ago is has all mixed up. In my mind, I see file cabinets and when change occurs it is like someone came in and pulled out all of my beautifully organized file folders. They are now a mess strewn all over the place and I am frantically trying to get them back to where they belong. I can handle the change as long as I have answers for it and I have time to put everything back where it is belongs – adjustment time. Time to adjust can vary depending on the situation, sometimes it only takes minutes other times it takes me years.

I wish I knew why this was so, but I do not and I have no idea how a situation will affect me until it happens. 

Maybe others have more insight on that or quite possibly it is just different for each individual. If the Autistic person is unable or even unaware of why they are feeling a certain way they cannot explain to the person(s) the reasons for some of their behaviors. For instance, Daniel is unaware of how much energy and mind power it takes for him to do his math. He loves math so he does not think that he is working very hard. However, he has been learning fractions this week mixed with multiplication tables and story problems. These all take a great deal of processing, the story problems are challenging and draining for him. We have to spend extra time on them because if they are not worded “just so” he will get too confused and not be able to move on.

When I read the questions, he may ask things like why does that person need to buy such and such and why did they need so many.

Or why does he want to give pencils to his friends? Where do they live, are they real, is that a boy or a girl? These are a few questions that he asks when given a story problem – his mind is full of questions. He is constantly processing, analyzing, and trying to make sense of his world. When the additional components of say sensory processing is affected this becomes even more of a challenge because he has to work twice as hard if not more to do things that do not cause him such struggles. It takes time, processing time can be slow some days and rapid fire others. I keep track of as many things as possible that I know he is processing. Interestingly, I have a knack for observing and studying people in this way when they are close to me. I think I had to learn to do that because of my upbringing it helped me survive.

I do this with everyone in the house that is why many times I do not realize how much I am processing too.

Those things that seem not to be bothering him are ones that I try to remind myself of because I know at some point he will have a response. He will have some sort of reaction it could come with only a few questions and he feels at ease or it could come after several hours of having a meltdown. Either way, I try to remember so that I can tell him. I have been explaining these things to him. He has asked me, “Why do I get upset?” When he asked me that one day, I decided that I would try to make sure I explained to him the reasons to the best of my observations. So far, this has helped him feel much better about himself and he has not been triggered into greater meltdowns because of being confused by them. We are learning and growing, I am still doing this for myself.

I was not aware of how confused Daniel was by his meltdowns until a month or so ago.

His ability to share that with me has given more understanding as to help ease his fears and anxieties. Daniel is not made to feel badly when he has a meltdown. He is not punished; I do what I can for him and try to make him feel safe anyway I can. Sometimes he is able to communicate what he needs sometimes he is not. If I do not stay calm he will escalate, I try to stay calm and not go into fight or flight mode myself. Fight or flight with my kids means I shutdown. It is not good when I shutdown because I lose my words. If I lose my words it makes Daniel very anxious. Today I had to take few deep breaths and walk away. It was not one of my better days, but we managed through it. I am having my own reactions to the last two weeks, the change in my routine, and the weather change.

When he feels overwhelmed now he has a “safe” place to go to (his room) which has helped a great deal.

Today Daniel decided to go to his safe place on his own. He chose to take time in the quietude of his room to make himself feel better. He did not rely on me to comfort him. This is a huge deal for him and it makes me very happy for him. This brings me to some more pure awesomeness! Daniel has an incredible imagination. However, much of the time no one knows what he is imagining. He does not share often what or how he is playing. To someone who does not know him it could look as if he is simply staring at objects or moving them around. He is doing much more than that. Today he shared with me about the homes he created for his animals. His animals are his best friends. He shared with me how he plays with them and that he talks to them.

He has told me on several occasions that he loves them as much as he loves me as well as everyone in the family.

That means that they are family to him and we treat his animals as they are too. Ariel has the same connection to her dragons and Joshua with his stuffed animal dogs – they are real. Daniel talks to his talking Elmo, Tigger, and he has informed me that he also, speaks penguin language to his baby toy penguin that makes sounds. This is all new, he would not talk to talking toys in past – he would just giggle and smile. Now he has conversations with them and he told me that he has an imaginary friend. I have heard him talking to him a few times now. He started that after Joshua was talking to his imaginary friends “Jake” and “Jay”, but he says that he has a bunch of them. The first time Daniel told me he had one too I asked him his friends name and he said, “I don’t know.” He has recently, given his friend the name “Daniel.” He names his stuffed animals Daniel too. :-)

I admit I had a rough time of it today – I am pretty drained, but this day is definitely going down as one of those great days … Pictures! 

Related Posts/Reads (The first few are from Autism Discussion Page)

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