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. 😂

Who is Turning Seventeen?!

I know it's been a minute since I have blogged. It's been even longer since I've written a personal, from the heart, rambling post. Time always has a way of slipping by. I intend to get over here all the time to write about this or that, but something else always comes up.

I've noticed that blogging in this kind of sense isn't as popular anymore. Most people are using YouTube for this type of thing and reserving blogs for business. That has made me wonder if I should keep writing. I have thought about vlogging, but it's just not the same to me. I don't love being on camera. Speaking doesn't allow me the creative room that writing does. It does allow more available time, I would think, but that is likely the only positive I can think of for that platform. So, for now I will write as time allows.

This week is going to be busy with a lot of big things. I have IEP meetings for both of the boys, or should I say "young men"! Ha ha. They are both in high school now. I am still homeschooling Beans, but he still gets speech services through the school district.

Bubby is a junior now and his meeting will be highly focused on transitioning out of high school and into some kind of vocational school, or program. He has stood firm in that he doesn't want to attend anymore schooling after high school, so I guess maybe it will be a program? They do have several around here that he can get started doing soon. It's an exciting and anxious time for me. I feel so nervous about helping him to make decisions. It feels like the beginning of school again, I guess. I used to feel so intimidated by the school administrators and think that it all seemed so scary and permanent. I realized a couple years ago that it wasn't as hard as I was making it out to be, and that I had all kinds of options for schooling if one didn't work out. I was stressing too hard over nothing. Now I have that part figured out, here comes another new chapter that feels scary. Guess that's how it goes.

Bubby will also be turning 17 Friday! He was so little when I began this blog. I can't believe he's already going to be 17.

Of course it's fall again.

Christmas for the Black Sheep

A couple days before Thanksgiving I began to wonder about the people that didn't have anywhere to go for dinner. The homeless, the family-less, the ones who couldn't afford to attend dinner with family far away. Even more so I was reminded of my own estrangement from my family. I was all too familiar with the feelings of isolation that holidays can bring for some of us. Even though I do have a wonderful husband, and 3 great kids to spend holidays with I still feel a tinge of sadness to know that it will be just us together celebrating without any other family, even though I do have parents, and a sibling that is alive in the same state.

It's been about 9 or 10 years now that I haven't celebrated any holidays, or birthdays with my side of the family. As time passed it turned from what used to be a festering, painful wound down to what now feels to be a dull ache. There's something about being nominated the black sheep, the unwanted, and wrong by your own parents that causes a deep down sense of self-doubt. It whispers from so far deep inside your psyche that the toxic voice gets indistinguishable from your own. They eventually turn into one in the same. You don't know why, but you feel out of place everywhere. You question your sanity, and worth as a person in everyday small ways that don't seem like criticism. It's just the way you perceive yourself, and your life. Every year this voice becomes closer to the surface, as your defenses fall, until one day you second guess it. "Wait," you say to yourself. "Do I think that? Is that my view about myself, or is that the way I was taught to see myself?" The hurt ego falls away to allow you to begin to get to know the you without all the pain in the way. Our fears get in the way of this process, but dealing with them is just part of the process. Being the scapegoat of the family often lends us a feeling of threat being around every corner. It can truly feel this way when you're a child in this type of environment. What kept us going, and surviving as children hinders us as adults. I know that I learned to identify anything out of place, or threatening in my environment as a way to protect myself. Problem is, is that this way of coping turned me into a negative radar. Always anxious, always preparing for the worst. My defense was my demise.

Healing From Family Estrangement- Finding a place for my pain

I have always thought that with enough time and healthy coping skills a person would be able to somehow "get over" or feel free from an abusive childhood. I don't think the term "get over" is quite right here. Maybe find a good space for one's past to fit into, and move on from there in a healthy manner is a better description than "get over".  I thought that negative feelings surrounding the subject of my childhood, and my estranged family would eventually cease to affect me if I just worked hard enough at being a healthy person.

I am beginning to think that my previously held beliefs are wrong.

Soothing My Loneliness

Some people have the same dreams over, and over, sometimes for years. I have never done this. Not once.  I have, however had the same theme repeat, sometimes for quite some time. Lately this repeating theme for me has been dreaming of caring for a baby girl.

Sometimes, having baby dreams means starting a new project, or feeling overwhelmed with responsibility, and many more things. In the dreams that I have been having for the last 6 months or so I have a baby that is a girl, but I often forget her places, or forget to feed her. Not a lot, though in the recent dreams. In the recent dreams I seem more prepared to meet her needs, and am able to keep up with most of her feeding times. She is smiling, and most of the way happy, but not totally. There is an underlying worry of her health in most of the dreams. I worry silently about the health issue, but I never talk about it. She is solely mine, and it seems that no one else is connected to her whatsoever. Unlike other babies no one else ever holds this baby, or cares for her in any way.

Since these dreams keep repeating I am guessing that it's a sticking point for me. Somewhere, I am emotionally, or mentally stuck. From the reading, and experience that I have with dream interpretation I am thinking that the baby in the dream is me. She is part of me, either representing my inner child, or a new part of myself that is largely undiscovered, and is still in the early new stages of development. That's a general interpretation, though. Before this morning I have not been able to quite get a handle on what that means. How do I apply that general theme to life? What does this mean? Until I figure this out self-growth will be stunted, and I doubt that I will stop having these dreams. What was it that I was missing?

There has been this heavy feeling that pulls me into a mood that is hard to define. I think it's loneliness, but it is so much heavier than any generic lonely feelings that I have had before. When it strikes in full it renders me anxious, desperate, and disconnected from others. I feel bitter from the years of rejection. I feel like I have no tools, and no way to fully remedy this situation. I don't know what it is, or where it comes from. it's just here, and I have to deal with it. I feel 'other'. No other way to really explain it. It's as if the rest of the world is on a plane of mutual existence, and I'm on another, disconnected, and alone. I feel alone, and damaged. I really believe that no one really likes me much, and that I'm not really all that good of a person. I want to turn to someone to talk to, but I have no one that understands. Usually during these times I will try to start a conversation with a friend via text, and that won't go much of anywhere, which only serves to reinforce this heavy feeling of people not really liking me, and isolation. The isolation is so big.

 One thing is for certain, these feelings are much too heavy to keep carrying around with me. Sometimes it almost drives me to suicide, because I firmly believe that I will never be free of this feeling long term. I will always be the person that everyone likes from a distance, but never up close. Up close is awkward. It means accepting my quirks. It means knowing that I speak what I think, and understanding that I think in a very different way than others. It means.... well, I don't know.... It's been over a decade since I had best friends to call, and idle chat over dinner. I don't know what it is about me that is off-putting, and it's likely that if I did I would be unable to fix it, anyway How do you fix your personality? I mean, my character is good. I am honest, and a loyal friend, ect... It's my essence that bothers people.

So, what does this have to do with the baby dreams?

I know you might be thinking that I am way off track here, and rambling without an end in sight, but I promise that there is a reason I have rambled on this far.

If You Had Three Wishes

The season of winter is turning the corner into it's finishing stages where I live, and I can tell you it is none too soon for this lady who suffers from seasonal depression. The days are getting a bit longer, and the sun is out in contrast to a few weeks ago when it was dark gray skies for days on end.

As I talked about in a recent entry, sometimes depression can be a useful signal that lets us know when we need to do something different. It can serve as a warning signal to us that things are not working, and our needs are not getting met. As much as I hate to admit it, I am still about as depressed as I was when I wrote that entry almost 4 months ago. That is astounding to me. If I didn't have a blog that detailed this I would not believe it. It has not seemed like 4 months. I think that is kinda how we get caught in a lot of patterns, though. We kinda get used to it, and for me this down feeling had kinda become my new norm. So, I got used to feeling blue, and sometimes the blue feeling delved down into despair. Other times, it zoomed up to good days. Which good days happen with depression. That's what makes it sometimes so hard to detect, because we might have a day, or even 3 of great days. Days that feel like we used to when we don't feel down. Days that we feel full of life, and energy, and those days are the ones where we doubt the depression existed at all. We think that maybe those days are the real days, and the others are a false experience, or at the least days where our weak will won. They kinda feel like maybe if I extended more effort, then every day could be a good day, and then the dark cloud returns, and I am not sure of anything.

Today is a good day so far, Yesterday was not. Yesterday I got to thinking of the old entry I wrote, and decided to really focus on my life, and what I would change if I could. I am sure that the dreary state of the weather has been a major culprit in my down days, but I also feel that there are things that I could change in my life that might make things better. So I posed the following question to myself:

If I had 3 wishes to apply to my life right now to change it for the better what would they be?

At first I thought this would be easy. Any wish. It doesn't have to be logical, or practical, or make sense. Just pick 3 things that would make my life better. It wasn't easy. I thought, and I thought. Finally, this morning I came up with 3. Here they are:

1. To have supportive family nearby. This one that I could have probably cited as a huge contributor to my depression. There is nothing worse than being disowned by your parents, and then the rest of the family pretty much following suit, because it's just less awkward to avoid you rather than deal with the unsaid conflict.(My mother refuses to talk to anyone that still talks to me.) There isn't a day that goes by that I don't have at least one panicky thought about my husband dying, because if he does I know for a fact that I am on my own. My family wants nothing to do with me, and wouldn't even come to my side if there was a genuine emergency. His family is not much better.

The more I thought about the wishes I realized that all 3 would be pretty much covered if we had family that could go to doctor appointments with me, and help run errands. If someone else stepped in to take my oldest two kids to fun things like museums, and out to lunch. If they could watch my kids, so I could have a moment to breathe, or go to dinner. To have people to turn to when you need help, or to talk that would understand autism.

2. More Money. Who doesn't wish for more money? If I had more some of my worries would go away, and I could probably buy the help I need where family can't be there. Of course, one doesn't just get money. I don't know how I'd obtain this extra cash, but I'm supposed to think of 3 wishes no matter how out in left field they may be.

3. Program for Beans. And, finally.... the last wish. I would love a program for Beans to go to that centered around the values that I hold, and conducted by people that I trust to treat him well. In other words, a fun, person centered approach that was NOT about compliance, but about growing at his pace on days he felt able to attend. No pressure. Just lots of positive activities. That would be awesome.

So, that is what I'd wish for if I had the power to obtain anything in my wildest dreams. I think it is a good starting place for me to think about what is missing in my life, and fix what I can, and deal with what I can't. I'm not sure what I can come up with, but I am sure that there are solutions if I keep looking. That is one thing that I am still confident about. there are solutions to every problem if we look hard enough, and are willing to explore alternative ways of thinking, and doing things.

If you had 3 wishes what would they be?

I Can't.

I can erase, and begin again so many times with this post, but in the end I know it doesn't really matter. I can try to craft an entry with words that captivate, and lend ease to reader's sense of imagination who happen upon my words, but that is not what this post is about. That is not the content I am able to put forth today. That is probably my least favorite form of writing. I like to write freestyle, letting the words pour out of my fingers almost as quick as I can think them. I like the freedom of the words showing up on the screen in front of me almost quicker than they can be recognized in my own head.

Truth is, right now I am not able to write any other way. My ability to speak, relate, hear, understand, and just be near people is severely compromised. It isn't purposeful hiding. I have hit a place mentally I cannot people. I can't hardly write. I can't hardly speak. I can't hardly think.

I just can't.

Awkward Encounters of an Autistic Woman

It happened again.

I am strolling through Walmart, actually power walking, because that is my usual speed. I round the corner of the cereal aisle, and out of the corner of my eye I see a lady, and a boy. I think to myself that that person looks a bit familiar, but then I am in an area shopping where there's a lot of people I see frequently that I don't know. I get a couple feet away, and I hear "Where is the rest of your family?" It's the lady that I passed. I study her, and her son's face for a moment, and realize she is my husband's cousin. She is offended. I have done this to her before. I try to explain that when I am shopping I am in the zone,and not paying attention. This isn't the first time I have blogged about my Face Blindness. I know that I have made so many social mistakes with this particular person that there is no way to fully recover. I just try to be gracious possible about the incidents, and hope she just thinks I am a bit loopy, and not snobby. It's not personal.

The other times it has happened it was with people I barely was acquainted with. Those situations I can kind of shrug off, because it's not that unusual to not recognize an acquaintance you don't know very well. However, I have known this person for over 16 yrs. I don't see her often, but honestly I should recognize her. As I thought about this after I got home another similar memory came to mind.

It was 15 years ago, just after my daughter was born. I was going out to dinner with my husband, and a big gathering of his family who was visiting. We got in the door, and one of bus boys seemed to take notice of us

The Space Where My Picture Used to Be- healing and accepting parental rejection

This morning my husband mentioned something to me that set off one of my triggers. It's the trigger that is linked to a sad, desperate, despairing deep in my the pit of stomach. It doesn't matter what it was, because that's not really important. What is important is that something so seemingly mundane should not release in me such extreme emotions that I sit on the edge swinging my feet, and tossing pebbles curiously into the pit of despair for the rest of the day. I make no fuss. No one around me would likely guess that I feel this way. I have matured enough to know that my reaction to something so small is out of proportion to the situation. It's a quiet sadness that longs for reassurance.

I know where this pain comes from, and while it's understandable, there is no logic in getting upset over something I can't control.

A few weeks ago my grandfather, and his new wife came to take my two oldest to stay with them for a few days. I jumped at this opportunity, because neither my parents, or my husband's parents (except his father) do anything with my kids. They literally don't ever have the grandparent experience.  While they were there they visited my parents.

My daughter said that there was no evidence in their home that I even ever existed. All pictures of me have been removed

My Family- A Story by Bubby

The other day Bubby wrote this paper about our family.  I thought he did an excellent job, so I'm sharing it here exactly as he wrote it.  Enjoy!

I have a great family. We all get along, except me, and CJ. but we still like each other.

I have a great Dad. He's a tree man.  And aslo he owns it.  He cuts wood and sometimes sells it.  And guess what?  He plays video games!

And I have a great Mom.  She likes to go on Face Book. She also cooks a lot. And for dinner we sit on the couch and watch TV.

CJ is not so bad of a sister. She is in archery. She has a boyfriend named S. .She likes South Park. Also she owns Cupid.

So, want to talk about me? Well I'm a Family Guy. Also I play Minecraft. I like South Park too. Also I like to play video games. And I play with Cupid. I have Asperger's. And I like to eat at restaurants.

My little brother Beans is good.  He has autism. And he watches us play video games. Also he likes to eat at restaurants too like me.

Well I hope you like learning about my family. They are very fun!

Dreaming Of The Past, and Looking Forward To The Future

I am one of those people that have vivid dreams that are colorful, lifelike, and so full of emotion.  I have
written about my dreams before on this blog. At first, I was hesitant, but then I am thinking...how could I leave off such a vibrant part of my mind?  How can I write about my experiences while leaving behind a big part of me?  My dream state sometimes is so real that I can't hardly tell the difference between awake, and a dream.  I don't know if this is due to my Asperger's that my brain is wired to express itself in such amazing description inside of my imagination while I sleep.  I don't know if it may be because my emotive state is so stifled while I am awake that it must express itself while I am unconscious.  It could be any of those things, but I do believe that having different way of thinking is a huge contribution to dreaming with such voracity.

Perceiving Beauty

I had an odd dream the night before last.  I only remember parts of it.  It was one of those kinds that the colors are faded and kinda tinted or washed out.  That's how things often look to me when I'm depressed. Everything literally looks faded to me.  When I begin to notice that happening I know it's a warning of sorts to get myself moving in a positive direction before things get too dismal.

Anyway, in the dream I felt overwhelmed with responsibility.  I was carrying one of my kids around and trying to make phone calls.  They were all very important calls. If they weren't made things wouldn't get taken care of and my family would be without. It just had the feeling of everything being almost an emergency and me not having the time to even prioritize anything. 

I was in a house I used to live in before we moved to our current house 5 years ago.  While I was walking through the living room I peered out of the big window.  As a walked past the image changed.  At first when I looked everything looked dead and bleak. It was all dull with big weeds growing in tall brown grass.  But, then as I walked a little further and looked from another direction it looked different.  I could still see the same grass and the same weeds, but  the sun was brighter and shining through the puffs of dandelions.  I could see the white wisps of the dandelions blowing gently in the wind, and I said out loud in my dream "When I look at at things this way, I see a dead, overgrown yard, but when I look at it from another point of view I see the beauty in the weeds.  I see the seeds are floating away to make new flowers for later, even if things look dead now. It is the cycle of nature.  It just depends on how you look at it what you see."  My mother was there and I asked her to look to see if she could see the same.  She could not.  She thought I was being crazy, but that was okay with me.  I knew what I saw and I knew it was beautiful.

This morning when I woke up, things seemed lighter.  The sun was sunnier, the coffee was yummier, the day seemed longer.  It was as if a light was turned on and my perception was better, more accurate, more sharp.  I don't know what happened, but I'm glad it did.

Reminiscing Childhood Play As a Girl On the Autism Spectrum -Edit

I realized the day before yesterday that I had left out a very important part of my previous post about childhood play.  I had forgotten to mention my all encompassing Star Wars obsession.  This covered years 3-8 or so.  When I suppose Little House On The Prairie took over.  I longed for Star Wars toys, but never had any.  My parents thought that such toys weren't for girls.  I loved going to visit my cousin, so I could play with all of his Star Wars stuff.  I also had an uncle that is only a few years older than me, who had just as big of an obsession with Star Wars as I did.  He had light sabers, and boxes of action figures.  Sometimes, when we would all get together we would play Star Wars.We'd get assigned our character.  I'd always be princess Leah.  Always.  This was not negotiable to me.  I'd cry so hard that I'd get sick if I was told otherwise. The couch was the ship, the chairs were the little personal vehicles.We'd decide on a plot and act it out. It was so much fun.  I wanted to be her in real life and often pretended I was, reenacting scenes.  I could spend hours alone imagining that I was on wild adventures with my imaginary crew.  This didn't go very well at school when I did this at recess.  I'm sure this is part of why I difficulty making friends.  Who says people on the spectrum lack imagination?  I know in this way, I certainly didn't!

It is odd that now, I hate Star Wars.  I've never watched any of the newer movies, despite my best efforts to.  I always fall asleep. It bores me to death, even more so than Star Trek.  I don't know what changed, or made things different.  I just know that Star Wars played a big part of my life growing up.  Too big in fact, to leave out. 

If your child wants toys that seem odd considering gender, please just let them be themselves.  There's no harm in girls playing with trucks and action figures, or boys playing with Barbies, or dishes.  Repressing their true selves is never healthy.

What The R Word Means To Me & My Family

Today is the official pledge day for Spread The Word To End The Word so I thought I'd like to do an entry about the R word and what it means to me, and my family.

As most of my readers know, I have two sons on the spectrum.  Only one has an additional diagnosis of a cognitive delay. When Beans got this diagnosis at age two I assumed he may eventually grow out of it, or things might change.  The developmental pediatrician didn't really explain to me what this meant, other then he was delayed in all areas.  I didn't think too much about it at the time.  I accepted him as he was, autism and all.  Not a big deal.

Then one day about a year or so ago, I happened to be waiting with my kids in our regular pediatricians office.  It was a lengthy kind wait. My eyes drifted over to Beans chart on the counter.  It was considerably bigger than the other two kid's charts.  I couldn't help but wonder what was inside.  I assumed nothing of all that much interest.  I decided to peek.  I came across the developmental pediatrician's report. I quickly began scanning it with my eyes.  I quickly felt my stomach drop as I saw the words 'mentally retarded',  'challenged', 'significant' and 'functioning' peppered though out the report. I could hear the doctor's voice coming down the hall, so I only got a small sampling of words before quickly shutting the folder before she entered the room.  This was not the report the dev, pediatrician had sent me.  It was not it at ALL.  I knew my son was delayed.  I knew that he seemed different then all of the other kids with autism I've met, but I had not thought that he was tagged as with an intellectual disability.

That night, I told my husband about it.  He was nonplussed.  He said he understood that the the day we had left the office 5 years ago.  I guess the doctor had probably said it, gently, between the lines. Cushioning the truth the way many NTs like to have it.  I was not able to infer this truth. I was not in denial, but I was not fully aware of our circumstances, either.  It didn't really change much for me after the initial realization.  Beans is still Beans.

I know that when most people use the R word they are usually doing it in a way that is making fun of themselves.  I used to be one of those people. (Not proud of that, but there ya go.) I know that most decent people would never call a disabled person like Beans a derogatory name.  I know most people aren't that awful.  I also know that the language we use reflects on the people that hold certain labels and statuses in our society.  Think about it this way. Think about every time you might be tempted to use the R word.  Maybe you made a mistake and said "I'm so R worded."  Or maybe something looked funny, or didn't work, or was wrong, or was defective.  The R word = those things, and my son has an intellectual disability that technically means the R word.  What if your name was replaced with the R word.  What if when people saw something nonsensical they said "That's so ______"  (fill in the blank with your name.)  What would the public's perception of people named _____ be?  Would who you are be affected by this?  Would you like to be equated with all these 'bad' things?  What if people said to you, "but I didn't say YOU were dumb.  I said the X was dumb.  Why do you take things so personally?"  You would probably know that they DID say you were dm,b, bad, wrong whatever indirectly by using your name, who you are to describe something unwanted, or bad.  This is what this sort of language feels like to those that are intellectually disabled, and the people that love them.  This is why it's harmful.

I want to leave you with a short video that I took of my son last night.  I was playing one of his favorite games with him, peek a boo.  He just loves this game and could play forever.  His smile and laugh is incredible.  Think of this face every time you think of using the R word.  Think of who you are hurting with your language. He is none of those negative things. He is beautiful.



*Sorry for the poor quality of the video.  It's a new camera and I was just trying it out. 

Path To Grieving

I've thought about this post for a long time,  I've started it, and deleted it several times, and may several more until I feel comfortable enough to post it, if I ever do.  There's nothing comfortable about death, and if you're on the spectrum, I find this is especially true.  The words that I write here I could never ever speak out loud.  The discomfort involved would be too great.  They'd never leave my mouth.  The air would travel up my chest, to my throat and get stuck in one big bubble of sadness and awkwardness.  I would feel equally uncomfortable if anyone tried to talk about their feelings with me.  It would be intolerable.  I always slink through February 17th in hopes that my husband (who has a long history of not remembering important dates)  does not remember what today is.  If he does, he will get all emotional, want to share that with me, and I can't.  I couldn't then and I can't now.

Today, 7 years ago, I gave birth to a daughter named Brenna Hope that was stillborn.  She had a rare condition called Anencephaly .  It is basically a birth defect where the spinal cord never fully forms, so the baby never grows the entire brain, or cap of the skull.  The baby is alive and kicking while still inside the womb, but cannot survive once born.

I remember the doctor's visit all too well. It was after the sonogram was taken, twice.  No one would say much during the sono and the doctor called me after the second one for an appt that was out of the usual schedule.  It was an odd situation, as my doctor had a stutter, and it was a pretty severe one, at that.  The more nervous he was, the worse his stutter... So picture me in his office as he has to tell me and my husband that our baby (at 7 months gestation) will not live.  I never thought the sentence would be able to leave his lips, as I sat there in agony trying to guess his next word he was trying so desperately to get out.  I just wanted to know what was going on with my baby.  The room starting spinning, and I began to get dizzy.  I couldn't hear the words after I heard 'no brain' .  My boys were beginning to act up, (as ASD kids do) so I took them out to the car while my husband talked to the doctor.  I didn't want to be in that room anymore.  I didn't want to talk to anyone. 

 My husband and I made the decision to carry on with the prenancy until I went into labor, which happened at 34 wks .   We were prepared for her arrival. I bought a few outfits.  One for the hospital, one for pictures (which were graciously taken for free by the hospital's photography) and one for burial.  Bonnets were a must to cover the disfigurement.  My mother in law made her a quilt to be buried in, as well as an identical one for us to keep. We had a coffin made for her.

We had a viewing and a small graveside service.  I appreciated everyone's thoughts and efforts in attending. The make up artist who donated his time to make my angel look presentable, the mortician who lowered his costs to accommodate our budget.  It was all very thoughtful.

I did not cry.  Not until I got home. I did not want my husband's hugs.  I wanted him to stop crying. I wanted him to leave me alone.  I wanted the pain to go away.  If you've never lost a child, then you cannot fathom this kind of pain.  It is unlike any ever felt.  I had no way to process it.  It was stuck inside me, swelling without any idea of how to release it.  I thought my husband was being too dramatic, as his grieving began the moment the doctor uttered the words 'is not compatible with life'.  I did not. Logically, I processed it.  Intellectually, I knew.  I never was in denial.  I joined the only on-line group I could find for this kind of birth defect.  I could not connect in any way emotionally with these mothers.  So, I carried this pain with me.  There was no way of getting rid of it, of releasing it, or of easing it.  I had no intention of going to candle light vigils for lost children.  It was not going to bring mine back.  It was just a display of emotion to me, and that I found un-useful.  I wished that I knew of my AS, back then. I would have understood why I grieve differently. I'd have been more compassionate and supportive of my husband's need for grieving and affection during this time.  Maybe, I would have been more prepared for the delayed wall of utter sadness, despair, and agony that awaited me not long after the burial. 

I wonder what kind of cake I'd be baking today, if things turned out differently?  Would I be wrapping barbies, or legos? Would she have a party with friends over?  Maybe, she'd be like the majority of us in or family and be on the spectrum.  Or, the harder questions.. Would I have had enough time for her?  Beans was a baby when she was born, so there was no way for me to know that he was profoundly autistic. 

I've heard people call autism a 'tragedy' right there in front of their living, breathing wonderful little children.  I tell you I know for certain that autism is no tragedy.  I know tragedy.  I have a keepsake box clothes, plaster footprints, and a picture on my nightstand of what I would call a tragedy.

The old saying, 'time heals' is truthful.  Every year it does indeed get easier. I am able to share this with a wider audience than those closest to me for the first time.  Even though it is in writing.  It's not been easy, but I have learned and gained perspective in life.  Children are gifts, even in the difficult moments I remember to be thankful, more patient, more compassionate, more playful. I know how precious they really are and how each moment is to be cherished. 

Letting Go Of Pain From The Past With Compassion

The other day  I ran across this this article about dysfunctional families.  It took me aback a little bit.  I held the words in my mind processing it for days now.  This is how my mind works.  I mull things over adding bits and pieces of information and understanding, until I build a better understanding of a new concept.  This process can take days, or it can take years. 

As a child, I was always acutely aware of my mother's sensitive feelings. I wanted to make her happy, and proud of me.  When I had class parties I'd always pick out the candies and treats she'd like best, before eating any myself.  I'd burst in the door with excitement presenting the treats I'd gathered for her.  I'd do the same at gift shops at class field trips. I'd use most of the money I'd been given to buy her something before I would myself.  Sometimes, I'd not buy myself anything at all.  While the other kids were busy thinking about what they wanted to buy, or what would make them happy I was busy trying to make my mother happy.  This is as one might have surmised by now, an endless task, as well as not my responsibility.  It's unfortunately one in which I've carried with me as one of those painful lessons you learn as a child.  I never learned to look after myself first.  Of course, there are positives to this, in that I am a generous person and will share anything I have with anyone in need.  I can and do get taken advantage of, as well.  I attracted people that were abusive to me and I accepted their abuse as just the way it is in grade school, all along until adulthood.

My father is likely on the spectrum himself, and was emotionally unavailable, as well as physically due to working long hours.  When he was around, he expected order, and quiet.  He never gave compliments and always let you know in a harshly critical manner when you were wrong.  I stayed away from him as much as possible, because we didn't get along.  I got no support from him and my ability to out-argue him relentlessly got me labeled a troublemaker.


As you might imagine, my father was completely unable to handle my mother's wildly swinging emotions and need for empathy.  He is simply unable to do so and she is unable to regulate herself.  I firmly believe she has Borderline Personality Disorder.  The two together is a recipe for disaster.  I became the person that things hinged on.  If things were good, I was good.  If things were bad, I was bad.  I was/am the scapegoat in the family.  My mother's mental health declined year after year.  By the time I was in my adolescence she was pretty neurotic.  With me about to leave the home, and my brother most of the way grown she wasn't as needed anymore.  She saw things that weren't there and accused me of doing things I never did.  If I got a new friend, a boyfriend, or even an interest that took my time away from her... she'd come up with something that I had done or they'd done to keep me away from them.  Even going so far as to admitting me mental hospitals, so she could get pity from family.  She believed that I summoned evil spirits to terrorize her and so many other things that were equally as crazy.  Child Protective Services tried to remove me from the home at age 17.  My mother said I was responsible for that, too and refused to speak to me for quite awhile after that. 

I was tragically scarred by these experiences.  As an adult now, I am putting things into perspective, allowing healing and new growth.  One of those processes is understanding what on earth made my mother behave the way she did/does.  As a mother myself, I can't fathom treating my kids that way.  I have asked this question many times over, and the answer I believe is in this quote:

“When another person makes you suffer, it is because he suffers deeply within himself, and his suffering is spilling over.” Thich Nhat Hanh"

 

I know my mother suffers.  She suffers greatly.  She can't help, but to let it pour over onto others, infecting them with her pain.  The last two years we are not on speaking terms at all.  Her pain of feeling abandoned by me was more than she could handle.  A conversation couldn't go by where out of the blue I'd be told how all of my struggles with my ASD kids are my own fault for moving away from her.  She won't visit me, because I made my own bed, so now I can lie in it, as far as she's concerned.  Or if I'd be asking for advice about my daughter she'd drop in that as long as she doesn't grow up to be ungrateful and mean spirited as me, then I'll have escaped the real pain of motherhood that she has endured.  I finally could take it no more.  I told her to get help to manage her pain, or leave me alone.  She chose leaving me alone.  That was painful.  It was awful for me, and I am still gathering up coping skills to help me deal with it.  I don't think anyone ever really gets over something like that.  So, if anything I have derived some comfort in knowing that it's not me, or about me.  She just can't contain her massive amount of pain and agony. This may be an important part for me to move forward, and letting myself feel worthy of love, life and joy.

Merry Christmas

Merry Christmas from our family to yours!
 From left to right: Bubby, Beans, My Husband ( I don't have a clever name for him yet!) Me, and CJ


This picture is rare in that we haven't had any kind of family picture taken in 9 yrs. Beans was way less than happy about sitting and Dad was subsequently bitten and pinched several times,  but we got it!

New Thanksgiving Traditions

Today I'm thankful for:
* The food I cooked and ate.
*The kitchen I cooked it in.
*The family I cooked it for.
* The ability and skill to make nutritious and tasty meals for my family.
* The courage to finally make the holidays be about what my family needs and not worry about everyone else.
*The laughter that my family shared today.
*Beans, because today is his 8th Birthday. :)
*My husband and his unwavering love and support.
*CJ and all of her help around the house.
*Bubby, and his unique, authentic self.


As this Thanksgiving winds up and my 33rd birthday is right around the corner I feel that my life is opening to new and adventurous paths.  This is a time where I think that maturity of life sets in and we start to see things in a different light.  We begin to see life as more meanigful in less big ways.  We slow down just enough to see the past and and future from the vantage point of the present.  Love, marriage, children and the mortgage might have been had by now in our lives.  Some of those things might have been lost, too by now. At this point in life most of us have experienced some loss.

My kids are smack dab in the middle of being grown.  One foot out the door.  It was only 3 years ago I remember buying my daughter an easy bake oven and polly pockets for Christmas.  Now, she has a boyfriend, and goes to school dances. Soon, she'll be driving.  This gives me an idea of just how fast time moves at this time in life.  Time is precious and not to be wasted.  Looking back, I wasted too much of it worrying about this or that.  Trying to make others happy, or worrying over what others thought.  Each moment I let go into my obsessive worrying, my obsessive needs to be perfect, my over focusing on me in a negative way, is one in which I can never get back.  When I let anxiety take over and take me to the place in my thoughts where I dwell in negativity I lose time to be here in the present.  I miss moments of my kids growing up, or an opportunity to just be in the company of my husband or to think of a friend, because I was too preoccupied with me own thoughts.  There isn't much room or time left when we let negative emotions take up residence in our minds, using up the present moment.

So, today my family and I stayed home, as is our new tradition.  We ate what we wanted, on our own schedule. My boys had pizza and no one batted an eye.  It was the pace we liked and how we liked it.  It was our holiday and we made it our own.  No one to tell us otherwise, and it was the best Thanksgiving we've ever had.  I just wonder what took me so long to shake the negative influences of others and do what works for us?

“Be who you are and say what you feel, because those who mind don't matter, and those who matter don't mind.” Dr. Seuss