Freestyle Ramble

It's getting to be be the latter part of October. The leaves are beginning to fall quickly from the trees and the colors are changing from olive greens to yellows and some rusty reds. In Kansas it's not always predictable what type of fall you'll get. Sometimes it might get too cold too quickly causing the leaves to fall from the trees before turning many colors at all, or other times there can be spectacular bursts of cascading colors that lasts into November.

Much like our fall my physical health is this way, especially this time of the year. Unpredictable. A few years ago when the migraines began to take hold I noticed that in fall they would get noticeably worse more years than not. I am kind of waiting to see how this one pans out. So far not much of a change in the norm of how it's been. I was finally able to see a specialist, so maybe a solution, or at least an improvement in the severity is on the horizon? Fingers crossed.

Tomorrow is Bubby's last IEP meeting. Yes. Last. He will graduate high school in May. He will turn 18 in about 2 weeks.

I will let that sink in for a second for long time readers. 😂

Altering My Time Spent

I've never been much of a T.V.  watcher. I do like a few shows, but in my spare moments as brief as they come and go, I like to do rather than just be. This can mean a variety of activities, but what it isn't is me sitting idle for very long. I literally can't. So, it goes without saying I'm not a Netflix binger.

Yet, I often find myself wasting my time idling away the minutes, because I only have maybe 10 here or 5 there to spare. Not enough to begin a new project, but I will need to do a new thing or be a new place in a few minutes. It's a constant low level of frustration for me, to be honest. I am a project planner and finisher, well inside my head I am. In reality I am a frayed mother, a caregiver with chronic illness who is often burning the candle at both ends, but trying to learn to only burn it at one, even if it's a hard process to learn. It goes against the mindset of my constantly busy goal setting brain. My perfectionist self would have me living in a white glove house, perfect manicure, never missing a workout, volunteering for charities, and more. I don't know who that person is, but I make a to-do list for her every day. Hahaha.

I'm finding these few minute gaps in my day to be the most challenging to fill, as odd as it seems. I used to really enjoy spending a few minutes here and there throughout the day checking in on social media. I'd pop in, chat with friends, post a little and be on my way. Now it's a litany of angry political posts, and clickbait articles with mean comments underneath. So, I scroll and I scroll hoping to find

Do You Time Budget?

Every night before I go to bed I like to take a few minutes to think about how my day went, and how I feel about it. There was a time recently where I felt like there was a lot of nights where I was going to bed feeling like I failed to complete what I had set out to do that day, leaving me feeling frustrated, and unsuccessful. I would sit in the quiet, and draw in an exasperated breath as I blew out my candle, and headed to bed unsure how to go about resolving the issue.

This is likely a familiar scenario with a lot of you reading this whether you're a parent/caregiver of a child with special needs, or are disabled yourself, or are just caught in a busy life with a high level of demands for a multitude of reasons.

I found myself redrawing my schedule, and reworking plans, but not able to make things work. There was simply too much to do, and not enough of me to do it, not to mention the moments I craved of solitude were becoming fewer, and farther between.

One day as I cleaned out some old stuff that my daughter had left behind when she moved out the answer started to become more clear. I grabbed a set of decorative pillows that had a small tear in the seam, and as I took them aside I went to find a bag to put them into so I could set them aside to sew them the tear later, and then likely sell them. Then I thought, but what if i didn't? I reasoned that I would likely never get to it, anyway, which was true. What if I just gave them to someone else who could give them the attention they needed? So, that is what I did.

I began to look at a lot of my belongings this way. Piles of projects that I wanted to get to someday suddenly seemed like they were more in the way, and taking up space than anything.I started getting rid of clutter, and clearing out the clutter in my mind, too. My attitude started shifting from

Where I've Been

Some of you that follow my blog are probably surprised to see this entry pop up in your social media feed. You may have wondered where I've been, or even forgotten about me, since it's been 2 months since I've written anything.

Summer has always been a busy time for me, and my family. There's just so much more to do in the summer, and I always need to be outside, and on the go, which means being online has to be done in small intervals. This summer has been no exception to that. We have been trying to get out as much as possible to enjoy the outdoors, and all of the activities that summer brings. They are all of Bean's favorite things to do, so I try to maximize opportunities as much as I can. However, this year has been harder than others to do that due to chronic migraines. Every other day, or two I have one, and it's a struggle for me to keep up with life in general. The swirling nausea, and dizziness slows me down, and the aphasia makes it impossible to write on a lot of days, even if I were to have the time.

Health wise it has been really difficult. Having a chronic illness kind of rearranges your life forcibly in ways you never thought about before, but suddenly have to deal with. I have no choice. It's not heroic, or inspirational, or any of those things. I'm a mother, and a wife, and a human being who has responsibilities. I have to get on with things, even if I have to do so in a different way then I had before. So, things have been prioritized, delegated, rearranged, and done at probably much slower speeds than I used to do them, but they're getting done.

Another reason that I find it hard to find the time to write anymore is that taking care of Beans has really

Finding Life's Meaning Under a Blanket

This afternoon I was laying on the couch under a fresh blanket that had just gotten out of the of the dryer. My husband had taken the kids with him for a bit, and I was alone in a quiet house.

And, I thought..."Wow, this is what life is about."

I was so relaxed, and I could feel the blanket (which is weighted) falling around my body gently, as the warmth soaked down to my joints. I was reminded of how nice it was to lay back, and do nothing while I had nowhere to be, and nothing in particular to do, but enjoy right now. I felt my thoughts tug to past where I wondered the last time I felt this way, but then I thought, does it matter?  Does it matter if I ever felt this, or when I felt this, or if I ever feel this again? Does it change how I feel this now? Well, maybe it might, because if I am thinking of another time, I can't be fully immersed into enjoying this one.

That's when I realized that (to me) life is about:

Is Less More When It Comes To Social Media?

I read an article several weeks ago about how we overuse social media, because of fear. The fear had to do with feeling like we're missing out. If we're not connected, and paying attention we might miss something, or be left out of an important social loop. Now, in all logic most of us know that 90% of social media is not really ever very important. This is not to say that some wonderful things haven't been done on social media. I don't mean to negate important social movements, charity events, and other such things that do very seriously impact our daily lives. We have to admit that funny animals videos, memes, and pictures of our meals are not exactly earth changing in, and of itself. However, many of us really fear that if we don't check in we just might not be in the loop, or involved in the latest trends. We might find ourselves left out of events, or without knowledge that everyone else will know, but us.

I thought that this didn't apply to me. I really don't care about most social practices. However, I couldn't overcome, or shake this feeling of irritation, and agitation that I would get when engaged in browsing Facebook, and Twitter. It seemed like it was not adding to, but taking away from my life. I finally came to the conclusion that I needed to change some of my online habits, because they clearly were not working for me.

But, what to change seemed to be the impossible question. I had to find the source of my upset. Was it the amount of time I spent online, or was it the content? Was it both?

How Rules Can Help With The Big Picture

The last few posts I have written about scheduling, and changing habits and becoming more productive as well as trying to give up being so obsessive.  Probably more of this blog is about that than not! :)  I don't know about other ladies with Asperger's or other differences and how they might be similar.  I just know about myself and these things have been a struggle for me for many years.  I used to spend several hours a day cleaning my house and it was spotless without question.  Then my boys came along and I had to choose between tending to them and letting them be themselves or having a home with nothing out of place.  I chose them and had to let my house fall far below my standards of clean.  I let it go physically, but mentally I knew I had to be a failure.  I thought that my house was by far substandard,and I was not a good mother, wife or person.  I felt that everyone else noticed these things and thought less of me, too.  Now, thanks to learning some really good meditating techniques and combining them with Mindfulness I know that my self worth is not dependent on such trivial things as how clean my house is.  I am not my house, I am not my clutter and I am not all these other judgements that I put upon myself.

Getting from that rigid of thinking and self flagellation to more balanced thinking was not easy, nor overnight.  I used many of the techniques that I have already listed in previous posts.  I am still a very rigid thinker and that's not likely to change.  No amount of meditation and mindfulness is going to be able to change how my mind works to that degree.  My brain, works on rules.  Everything has a rule.  I am not over-exaggerating. There is not much I don't do that I have not thought through, decided on how to best carry out every little detail to increase functionality and efficiency.  These rules become a ritual and I don't care much for these being changed unless I have lots of time to think about it first and acclimate.  The order in which I load the dishwasher to the order in which the towels are put away, to the order in which I watch TV programs on my DVR all have rules.  Those rules all serve a purpose to me and for me.  They make sense in my world and they make me happy when carried out.  They make me equally unhappy when they are not.  Even though I get overwhelmed in the wake of the hurricane like mess my husband leaves everywhere I think his chronic disorganization was okay with me, because I could control my environment.  I could control my world. I make the schedule (because he can't) I decide where things go, and what bills get paid.  He can't (or greatly struggles) do these things, leaving the door open for me to be in a relationship that is almost like being alone. 

So, rules have been my way of getting things done, even with mindfulness.  If I have a rule, I can cope. My brain has something to latch onto.  I have lost weight by making rules about how much to eat and when.  I make rules about exercise, when and how.  When cleaning to give myself more flexibility and be more productive I bring a timer.  I have tried several different methods, but this one has worked the best.  I alternate half the house every other day by cleaning 5 rooms a day.  I clean each room for 5 minutes and when the timer dings I stop.  I have to move on to the next room.  Otherwise, I'd be so overwhelmed with details that I'd be in one corner of the house all day doing things that most people reserve for spring cleaning.  You'd be amazed at what you can get done in 5 minutes, especially if you move quickly, because you know you only have 5 minutes!  I do one room a day for 20 minutes, so that some bigger cleaning like mopping and such can also get done.  That's only 45 minutes a day, but it seems to do the job.  I don't always get to it daily, but I try.  Without my timer, and without my rules of time I'd be stuck on details either not moving due to feeling too overwhelmed by the totality of it all, or I'd get too involved and get next to nothing done in the way of the big picture.  Keeping the big picture in mind is a difficult thing for me to do. Feeling like I have some structure helps me to move ahead towards my goals.

Organization Tips for Autism and ADHD

In my previous post I talked about some of my issues with getting organized.  I have some tips, as wells as the rough diagram of my to-do list I've been using for awhile.

First, let's talk a little bit about why someone might have issues with being organized.  Executive Functioning is a term that is defined by the ability to organize information and stimuli, while regulating one's own emotions, and thoughts, as well as prioritizing what needs attention. That's a very basic definition, anyway.  Executive functioning is impaired/different in people with neurological disorders, such as Autism Spectrum Disorder and ADHD.  In my family, all 5 of us have an issue with one of these two conditions.  While the reasons why I struggle to be organized differs from my husband's the results often look the same.  The only difference is that I can figure a way out of it, where I honestly don't think he'll ever have the skills, as well as he really doesn't care if things are messy, disorganized and off schedule.  I care a great deal.  My basic to do list is divided in 4 quarters:




DAILY TASKS :                          

  In the upper hand corner here I have my  daily tasks.  These things generally need done everyday, like dishes, laundry, exercise ect... If you find you don't have to do the task that day, then cross it out. These are your basic tasks. These are in the Have To Do category.      

 NEED TO GET DONE:

 On the right side I have things I Need  done that aren't daily activities.Such as,  important phone calls, errands, appointments.  Also, other things that are weekly like washing sheets.




   PROJECTS: 

  On the lower left hand side is where I put tasks and projects that are more long term, so that I still have them in my  mind and can plan on moving them to my Need list.  I also put stuff that I want to get  done, but may not have a chance. I try to resist  the urge to clutter up the Need area with things that aren't urgent. Prioritizing is key. If I can just get my daily tasks and Need tasks done, then I feel  I've accomplished enough.

                                                                                                                                                        NOTES:   

On the lower right hand side is where I put daily reminders, and messages. I even keep phone messages here. This reduces clutter by using one sheet of paper for everything.  At the end of the day, I put any important info or phone messages in my notebook, or wherever it may need to go.  The list goes in the trash.                                                                                               

Autistic Sense Of Self: Part 2 Pronouns and Consciousness

As promised, another post in the continuation of The Autistic Sense of Self.

One thing that I have noticed with autistic children is that they often reverse pronouns and refer to themselves in third person.  As a toddler, I called myself by my name often.  My verbal son never used the words me, my, I, or mine until he was 4 in a half.  He would say 'your turn!' when he meant 'my turn', or 'give it to you' when he meant 'give it to me' as well as call himself by his own name.  I think the name came after he began straightening out the pronouns a bit.  I'm not even sure that he recognized his name as him before then. (which may also explain why ASD kids don't respond to their name being called)  You can read more about the new studies scientists are doing with FMRI and studying pronouns usage and sense of self in autistic brains HERE .

This also may explain some of the Theory of Mind that autistics struggle with, as well.  If we don't recognize ourselves as distinguishable from our environments and other people it would be hard to understand that someone might feel different than us, or have feelings independent of our own thoughts.

I remember once when I was about maybe seven or eight I had a revelation dawn on me as I looked in the mirror.  I remember it very clearly.  I stood in front of the bathroom mirror and looked into my own eyes and for the first time ever I realized that the person staring back at me was me.  It's really hard to explain, but I'll try.  I could see that behind my eyes was a consciousness.  This sort of fluid stream of personhood that was Me. This was permanent.  I searched the contours of my cheeks, the depth of my brown eyes, my tongue.  These belonged to me.  These were mine. The person I saw looking back at me was in essence me and was me in my past, right now in my present and will be me in the future.  There existed a thought process of more than just a moment in time that I never knew before.  I could hear my parents and my brother on the other side of the bathroom door.  I realized that these people were attached to me in permanence, as well.  They existed in my past, present and future as my family.  There was a difference in this moment between dreaming and being awake.  I suddenly understood time as a concept, as well as how it related to me. Before then, I seemed to exist on fragments of time and consciousness.  The way a dream might feel, but now I was aware and awake.

It wasn't long after this incident that I began to understand that states of mind and emotions existed independently from my own.  At first, I felt that everything had feelings.  I worried obsessively about things like making sure that I played with all of my toys evenly, so they would not have hurt feelings.  I didn't want to cause anything to feel as left out as I did at school.  So, I began with my new found knowledge of time and ToM to become rigid in all that I did.  I lined up toys so I could make sure they were treated equally. I worried about how trees and the earth felt.  I began the extreme rigid behaviors that would fuel me for the next 20 some yrs with anxiety.  I began my insistence on sameness in my routines and well as environments.  Before then, it was more like my world was totally a sensory experience with a certain disconnect from one moment to another.  My memory and thoughts were more a sensory oriented and less verbal or even visual.

To be continued...

Sense Of Self Part 3

Finding Time For Peace

In This Article By Thich Nhat Hanh he speaks of finding time in everyday life to create a Spiritual Practice.  I find it to be a really good reminder that peace is always available to us at each moment.

Too often we think that we have to make time to meditate, or be more calm, or be more Mindful.  We wait until we can squeeze it into our busy schedules, except we have such stressful, busy lives that there never seems to be a moment to spare.  Planning on 20-30 minutes of sitting doing nothing seems like a healthy thing to do. It seems like it would be wonderfully relaxing.  But, something else always seems to come up and snatch away those minutes we had planned to use for finding peace. Our best intentions aren't always met with actions.  Especially, for those of you that follow my page with special needs kids.  We know all too well that at the end of the day what got done was what got done, and the rest will have to wait until tomorrow.  For me, it was always a tomorrow that never came, or at least not very often.

So, what worked for me was taking several small moments in my day to really be alive in the moment.  I focused on my breath, on my toes touching the floor, the smell of the air.  I live several moments in my day as if there were no others to consider. I was amazed at the transformation that happened.  It seemed to open up a new way of thinking for me.  I seemed to have more time, more patience, more happiness, more joy, more love, more compassion, more of what I'd been trying to manufacture through all the busy-hustle bustle that I've been engaged in all my life.  The world seemed to move slower for me.  I never realized before how stiff I held myself, or how much I closed off the back of my throat constricting air, almost as if I were predicting panic at any moment.  This was my constant state before taking Mindful breaks.

One thing that I did in particular was I took out my cell phone and took a picture of nature, or something else that I found fascinating, besides another person.  I took close ups of blooming flowers or a tree glistening as the sun set behind it.  I take one at a time and use them as a wallpaper on my cell phone.  Right now there is a beautiful purple flower that I took while outside with the kids while they were playing.  Doing this helps to remind me to look for the beauty in things that are all around me at any given moment.I can instantly remember how peaceful I felt in the moment I took the picture when I see my cell phone.   There's always something spectacular to look at if one is using the right mind to see.

More On Thoughts, Guilt and Time...

I have been doing some posting about time management and how more is not necessarily better in this post.    I have been monitoring my own behavior when it comes to my daily routines and what I seem to feel is important and what I stress over. (I think if I listed what I don't stress over the list would be shorter!) As well, as what seems to follow most parents, especially parents with special needs kids.  You know that feeling that you get at the end of the day when the kids are about to go to bed, or perhaps after.... the one that nags in the depth of the back of your mind all day.  Lurking, but not terribly vocal, but always present.  Guilt.  The feeling that maybe you could have, should have, would have done more.  You read a blog from a parent where they have it all together.  They did therapy for all 7 of their special needs kids, made 3 gluten free from scratch, homemade meals, went to lunch with their friends, potty trained one child, house is cleaned and even had the time to write about it in their award winning blog before they go to bed. 

Maybe, the above is an exaggeration, but still.... I think there are several of us parents with special needs kids that feel that way at the end of the day.  I carry this narrative around all day that I tell myself all these negative, half baked truths about what other moms are and what I must be compared to them.  The story that I tell myself is familiar, but not useful for a calm, mindful parent that I'd like to be.  When I come down hard on myself and expect a certain level of unattainable perfection I am grumpy, short, and snappy.  When one feels bad on the inside you will reflect that on the outside, no matter how much we think our feelings and emotions are ours alone to contend with.

I have been telling myself these stories with my thoughts for so many years that it's automatic.  I had to really put some effort to go off of autopilot to examine my thoughts.  It's been an experience for me to mindfully look at what I believe and really question the truth to it.  To hold up my own thoughts and examine them.  Before, I didn't think much about them, nor did I question them.  I just bought my thoughts as true.  My reality.  But, what if they weren't true?  How will I know?  What is the test?  Is there such a thing as true or false with thoughts and feelings?

And, so with Mindfulness and the ACT therapy I have been studying comes in handy here.  Let's break this down using a common thought or two of mine that is less than positive....

"I didn't take Beans to the bathroom today to practice potty training"

Now, the above thought can be replaced with, I didn't try to incorporate enough signs in his day, or engage him enough, or exert enough effort in making sure I somehow snuck enough nutrition into his diet.  As well, as with my other son, maybe I felt I didn't write a social story to explain something to him better, or socialize him more, or practice emotion cards with him... the list is really endless...But, back to breaking down the italicized thought above.  Who's voice is this?  Is it mine?  Or is it someone from my past that may have always said critical things to me?  Do I like this story, or benefit from it?  Is it helpful?  How does this make me feel and does it motivate me to be the self I want to be in order to meet my own goals and values? 

After I have asked myself the questions above I come to the realization that this is not my voice, I don't like how it makes me feel and it's not helpful to me.  It's not necessarily bad or wrong, but also not a thought that I am buying into as something that is representative of me.  I notice the thought and let it go without reaction.  I can't be perfect. I'm human with limitations and feelings.  The kind of mother I want to be is one who is happy, relaxed, and confident.  I can't be her when I'm buying the stories that I spoke about above.  I have to make a choice and a conscious decision as to what kind of parent I can be vs the kind of parent I think I ought to be. 

This isn't to say that sometimes we don't have to make changes and do thing differently.  The diet that I often speak of in this blog was a big change and one that required effort.  I didn't lose weight by simply being upset at myself, though.  I vowed to make some real changes, because I felt that I needed that to happen to be the person I want to be.  I am not berating and depriving myself of treats and freedom, but rather eating better.  I don't chastise myself into dieting, because that never works.  Same with parenting.  Truth be told, Beans is in the very early stages potty training and isn't cognitively or physically ready to be trained yet.  Myself, and the staff that work with him are just acclimating him to the toilet by introducing it slowly.  The fact that I didn't take him very much, or at all for that matter, isn't a big deal and I shouldn't make it one inside of my mind when it's time for me to relax.  Letting myself be, in the moment without judgment is a difficult task, but worth the practice.

Time and to-do lists Part Two:

In the last blog post I talked a little bit about how we schedule our days with more than can reasonably fit.  Some by choice, some by necessity.  As I mentioned, some of us don't have the time energy and money to be able to do what we would like.  Some people work 14 hour days not because they want to, but because some people have to.  Some of us with special needs kids don't have respite or family to help.  There is no 'outsourcing in childcare' as one article put it.  So, as I write about slowing down and being more in the moment I am also sympathetic to those in society that for a variety of reasons don't have the resources to pick and choose their schedules with ease.  I am one of those people and I am well aware of the conditions when money and time is finite.

I think what I have noticed in myself as I try to be more flexible in my routines (no easy feat for an stubborn aspie such as myself) is that I worry too much about what others think, or what may happen if I don't get X task done.  I also feel a constant need for perfection.  I feel I have failed if I don't live up to certain expectations that I have set for myself.  These expectations are always unattainable by any human. I am almost guaranteed to fail.  Self compassion and a dose of realistic thinking can go a long way in making my life more content just by giving myself a break.  Will I always remember to take my 7 yo (who is in the beginning stages of potty training) to the bathroom several times a day? Or remember to get use his special therapy cup to enhance learning to drink from a regular cup vs a sippy? Or, the slow, slow, slow process of exposure to the hair clippers daily? Or to stop and make him sign for simple things?  How about all the social stories and emotion cards that are never printed for Bubby?  Or the tutoring for CJ's dyslexia?  I do remember most of those thing most of the time, but not all of them all of the time.


I am finding that as I realize that my part of my own downfall is my attachment to perfection.  As I let go of what I think I *should* be or *should* do life is getting fuller and more enjoyable.  I have lived my life from a view of distance rather than being in the moment feeling fully in tune with what I am doing.  Just being  aware of how the choices that I make in my day to day life can make all the difference in leading what I would like to call a fulfilled life. I try to rank importance of tasks relative to time. What will make the most difference is 5 days, weeks, or months? How much does having my house dust free matter vs taking the kids to the pool daily?  What will matter more in the long run?  I have to be aware that it's unlikely for me to do both all the time.  Once I have gotten rid of that illusion the choices seem more clear.

Time and to-do lists Part One:

There was something I noticed while trolling the many news feeds and such that I frequently read... there were many that were telling me how to get the most out of my day. How to maximize my whole time potential, like in this article here  .  I think if this woman was off her schedule by 10 minutes her whole day would probably fall apart.  Every minute seems planned and accounted for.  It seems that there are some that have that kind of control over their resources to be able to strategically plan that way.  Living with autistic children don't always go to plan, so making myself a priority in every waking moment of my pre-planned day would not work.  No matter how many spreadsheets of data I take on how I spend my time and how many 10 minute intervals that I allot myself to think. (rolls eyes) Who schedules time in to think? And, how have we become this multi-tasking society that pencils in every waking moment of everyday with tasks and activities?

That's not to say that the article isn't without a few good ideas.  I do think it's worthwhile if you've not ever done it (especially if you're not a routine oriented person)  to get out a notebook, spreadsheet, whatever and document your day in 15 minute intervals.  How much time do you really spend on Facebook? How about in front of the TV?  Or any of the many other activities that fit in your day.  Knowing this information is important in deciding if you're living your days out to what matters most to you, or if you're just drifting by doing things that hold little meaning for you while wondering where your time goes.  Or feeling that nag of boredom.

I have slowly started to adopt the approach that less is more when I am looking at my schedule. Like in this article about slowing down  I am realizing that I am not more fulfilled when I do more.  Sure, there are days where I get a ton of errands or housework done, but there are also days where my energy wanes and that's okay, too.  Accomplishment feels good, but when is it that our lives became are about a monumental list of tasks to tick off?  When does that feeling of accomplishment feel like a dog chasing his tail?

To be continued in the Next Post