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.

Invisible Me Visits From The Past

Some of you may have noticed that yesterday I remarked that I had had a bad day on my FB page due to letting others under my skin, again.  I didn't specify anymore than that.  I wasn't sure I wanted to, or that I ought to. Then, I figured that I share so much else on here, and sometimes in the process help others in the same sort of situations, so I might go ahead and post about what happened.  Also, writing sometimes allows me to get things out that I can't do verbally. I am not very good verbalizing my thoughts and feelings.

Last week my father called me. I haven't spoken to him for about 2 yrs. Every time I called to wish him a happy birthday or happy father's day I'd get his voice mail. I eventually just stopped trying. He wanted to tell me that my mother had left him and that he was sorry for writing me off because my mother didn't like him speaking to me.  I was happy to hear from him and let all resentment toward him go.  I figured that my mother in her craziness would turn on others after I was no longer around to accept her abuse and drama.  I was correct.  After 34 years of marriage she packed up without warning and left him, going clear across the country to her sister's after clearing out most of the bank account.

I was excited to rebuild a relationship.  I had all these grand plans of him and my brother coming to visit, and we would do this and that.  I would finally have someone to talk to that was family, that cared for me and supported me.

A few days went by, so I thought I'd try to chat with him via skype, only to get a hold of my brother who told me that mom came home.  No one told me.  He said Dad would call me later.  That was almost a week ago.  He isn't calling me.  It's back to where it was.  I am the odd one out.  Cast aside, and vilified.  I was doing okay as it was.  I didn't need the false hope that maybe, just maybe I was worth something to them that they'd give me the time of day.  It was a wound ripped right open for me.  I was once again the weird little girl who no one noticed, and no one cared about.  My desperation for this acceptance was so great.

Old behaviors started creeping back in... namely anorexic thinking with it's old friend body dysmorphia.  I create these things to control something. If only I was thin and pretty enough people would like me. As well as it's a way to control and punish myself for not feeling good enough by other's standards.  Thankfully, I have a husband who is here for me.  He quickly reminded me of how ridiculous this whole dieting thing was.  I am not overweight and if I lose more than a few pounds I will be classified as underweight.  I wear a size 5/6 (UK size 7/8) and am not short.  Dieting very much for me at this point could be dangerous.  Logically, I know that, but that's not how I feel inside.  I feel desperate to change something.  To do something. I just want to be accepted.  I want to feel worthy and good enough.

After I had a massive meltdown yesterday, and got some sleep I feel better today.  I am able to get back on track with healthy behaviors and let go of what isn't and never was.  It's an unfortunate situation, but one that I am stuck with.  I may as well make the best of it and do what I can and leave the rest alone. 

This whole situation remind me of a dream that I used to have often as a child.  It's one in which I somehow got turned into a ghost and no one could hear or see me.  In the dream I'd scream and beg for my parents to reply to me, only to be ignored. I'd go to school where the same happened.  Everywhere I went I was invisible.  I wasn't noticed.  I would eventually get myself so worked into a desperate tizzy that I'd awaken, crying and terribly anxious.  Through the years, the dream would change a bit in scenery, and such, but the theme would remain the same.  I'm tired of being that sad, lonely, ignored little girl.  I'm ready to be noticed by those who matter most.  My husband and kids, and forget the rest.

Reminiscing Childhood Play As a Girl On the Autism Spectrum

I've read a few news articles lately talking about the differences of how girls with autism play differently than boys do, mainly how girls don't do as much lining up and fixate on eccentric subjects.  This got me nostalgic of my childhood.  How did I play?  Was it all that much different than other girls?

I have an extraordinary memory of ages that most people (non-autistic anyway) can't remember. While I only remember snippets I can fondly recall some memories from when I was just a year old. My favorite thing to play with when I was about 1-2 yrs old was a Humpty Dumpty puzzle. Much like the one to the left.  I'd dump it out and redo it all day long. It now strikes me as something that might be a little difficult for an average 12-24 month old, but nonetheless, it was my favorite.

When I got a little older I really liked books.  I wanted my mom to read me the same books over and over again.  My favorite one was 'The Poky Little Puppy'.  I just couldn't get enough of it!

My next book obsession was the Sweet Pickle book collection.  I loved the stories and the little maps they had in the back of the book of the town.  My favorite book out of that series was:
Funny how even at age 3 I knew how anxious I was!  I couldn't stand 'Me Too Iguana', though.  Copy cats and people who are unoriginal still are pet peeves to me now as an adult!  I would recommend these books for any spectrum child, as they really capture emotions in ways that an autistic child can grasp and learn from.  My son Particularly liked 'Zip Goes Zebra'. I'm guessing due to Zebra's zany personality and love for adventure.

As a got a bit older I started playing with dolls and play dishes.  I was the type of child who could entertain herself for hours with very little toys.  I never did master the art of pretend play.  When I played, there was always a script, or a plan.  If I played with my dishes, I'd spend more time arranging them, than actually playing with them, and I never ever pretended to fill the cups with liquid, or plates with food.  I'd always use real drinks and real food.  Seemed idiotic to not use any when there was some available.  Never was sure why other girls didn't.  I rarely played tea with other girls when I was really young.  I didn't get much of an opportunity, and I was too bossy, anyway.

I didn't play as much with baby dolls.  I did however play quite a lot with Barbies.  Most girls would dump all of their barbie things out into a pile and just use things as they pleased.  I didn't do unstructured play like that.  I would line up every Barbie (I had about 5) then I'd categorize every item of clothing and accessory.  Ball dresses, skirts, shirts, shoes, ect would all have a pile.Then, if I were playing with someone else we'd take turns picking from a pile until it was finished. If there was an odd number the odd item would go to another pile to be picked through evenly at the end.  Every Barbie always got the same amount.  To me, this was fair and the best way to play.  Needless to say, other girls wouldn't always want to play with me this way.  If they were my cousins, or people that I didn't like much I'd tell them they had to or they couldn't play with my Barbies.  I'd rather play alone, than with them messing up my order.  If I were at school with girls that I wanted to be my friend, I may concede to their way, but I'd get very whiny and moody as the time crept on, with my order messed up.  It was like a small itch gradually turning into a thriving rash. I barely could ignore the fact that my routine was destroyed.  I played almost every game this way, even Legos.  Legos were categorized by shape, then chosen by the players.  You played with your Legos and doll stuff, and I played with mine.  Only under negotiation was there to be any trades.

I used to line up many things.  I'd spend hours lining up my stuffed animals. I'd categorize them first, by color, or by animal ie; lions, cats, bears, ect..  I'd line them up by a category, look at them from all different angles and from across the room, take the line down, and do it again.  I used to do this with almost everything you could think of, dandelions, rocks, weeds, silverware, anything!

I'd play 'store' a lot.  That's where I'd set up tons of objects as if they were in the store.  I'd even make little price tags for the items. This literally would take me all day.  I didn't always even get to play with the stuff I arranged because it would take me so long to set it all up.  My favorite was to play this was outside with old jars and soup cans.  I'd fill them with dirt and line them up, then dump them out and do it all over again.  My mother didn't like that one as much, and I always got into trouble for playing with broken glass jars and rusty old cans.

By the time I turned around 10 years old I was really into Little House On The Prairie books and horses.  If I wasn't reading I was drawing about it. I loved those books! I did like to dress up like I was a teacher and read the books aloud to a pretend classroom.

My obsession with reading kept on through my teen years,as well as lent itself to a love of writing.  Play was swept aside at age 13 by an old timey typewriter.  I spent many a nights clack-clacking away (much like now!) a story for the fun of it.  To replace my need for categorizing, I began making lists.  I made lists of the boys I liked, or what clothes I wanted, or friends I had.  I listed things I wanted to do, did do, or what I liked to do.  I made lists of lists.  Much like now, I could never see boredom in the world that I could always find something interesting to do.

One last toy to share before I can call this an inclusive entry of beloved toys and books:
Anyone remember the Spirograph? It used to keep me occupied for hours!

Part Of Me

There's been so much controversy here in the autism community lately about what's okay to say and who has the rights to say it.  I think that it's always best to try to not be offensive to others, but free speech is so important to me that I believe that everyone has a right to express how they feel, even if it's something I vehemently disagree with.  I still want to hear your side. I want to know what is behind those opinions, those thoughts.  Strong words usually have a story behind them. I want to hear that story and understand what has caused you to take such a strong stance.  I want to hear what makes you think that autism sucks, or why you hate it.  I want to know why some of you feel that only the parents of children with severe autism have a reason to feel angry, or the only ones that can really understand 'true' autism.

Usually, when I try to listen I get past the words to the emotions.  These emotions are strong. Sometimes, they are desperate ones. Sometimes, they are angry over lost time, money, health. Sometimes, they are sad. They are sad for what they think or even know their child endures daily. Sometimes, these emotions are from fear. Fear of who will care for their child when/if they die. Fear for the every second their child is out of their sight, because you know that in their lifetime there is a very, very, very high percentage of abuse and that teachers, carers, peers, and others will target your child due to their vulnerability.  You know that many will never understand your child.  Sometimes, it's a feeling of deep sadness, because you know your child is sad. You know how much they yearn for a friend, and to be accepted and you see that autism is what's stopping that from happening. As parents, we feel so strongly a need to take away these struggles from our kids. We want so much for them to be happy. Sometimes, the parents are just exhausted. They need sleep and they need a break.  There's so much worry that accompanies the parents of autistic children, even when they grow up. You see autism as the problem. If there were no autism, then these problems wouldn't exist.

But, autism does exist. It's a part of me and not separable from me, or my sons.  If someone gets upset about one of my autistic behaviors, I feel they are upset with me. When they hate autism, they hate a part of me. That makes it feel shameful, and bad. Like, something I need to hide away. In doing this, I have carried so much extra burden and self hate. I am now at a place in my life where I am tired of carrying it.  My neurological differences are not shameful.  They are just different. I need to put this extra weight down and relieve myself from carrying these expectations of what society says I should be.  Not because I think autism is something spectacular, but because it's part of who I am and it's not going anywhere. I may as well accept it.  I can't change it.  I can't change the fact that Beans will likely never speak, and may not even be potty trained as an adult. I can't change that Bubby may never go to sleepovers with other boys or be able to read other people's intentions. It is what it is. Some days are good. Some days aren't.  Some days coping seems to be all I can do. I always want my boys to think of themselves as someone who is loved, and deserving of the same respect everyone else is.  I want them to know that their differences may make them different, but still people of value.  I don't ever  describe the using words that are negative. I don't want them to see themselves that way and I sure as hell don't want society thinking of them that way.  Sometimes, I hate it when Beans chews up my power cord to my laptop, or pees on the floor.  I hate the situation , not the autism.  I hate when Bubby throws a fit over a routine change.  I hate the situation, not the autism.  I hate when I go to a social occasion and end up mute, not being able to join in socially, even if I want to.  I hate the situation, not my autism, and subsequently myself. 

That's my take. As I said, always happy to hear others.  Life is guaranteed to come with struggles.  Some more painful, than others. Some, seeming more unfair than others, but we all have our own. Please try to remember that when speaking to others.

Pre-meltdown

Some may be wondering about where the video I posted earlier went. I felt self conscious about it and took it down. It happened again.  It's still happening right now, as a matter of fact....

By it I mean frustrations leading to meltdown status.  I'm not yet in a meltdown, but I could so easily slip right into one, as it's close enough to taste right now.  It's that sensation of nothing be right.  How wrong it all feels. My head is hurting, my stomach is in knots, and nothing feels right.  My skin recoils from every texture, my ears feel no respite from every noise that seems to be all on max volume.  I want to run away, but have someone hug me. I want t be left alone, but talk to someone.  These are my contradictions of meltdown.  Rational thought is still present, but contained in a bubble by itself, while emotional fretting is surrounding it.  I know this is nonsensical, but it's like I can't stop it.

I don't even know when and where it began. I know I read a few things this morning that didn't sit well with me, so I tried to explain my side. I was unable to do it satisfactory, at least in a way to persuade others that my view had merit.  It snowballed from here.  It has been one of those days where everything on-line that I tried to participate in went this way.  I think a normal person would have decided it was time to pack it up for the day several hours ago and busy themselves somewhere else.  Not me. I'm not normal.  I perseverate, and I do so with vigor.  These last few days I've seen a lot of ugliness in the autism community (both from NTs and autistics). I've seen a lot of irrational behavior and assumptions that make no sense and do not fit fact.  This is not merely my view on life, but real facts.  One person's fact can easily be seen as opinion from another perspective... which I know rationally.  But, my brain can't wrap itself around such a broad concept.  My brain says, it's either one or the other.  It's black or it's white. I can't. move. on.  I'm stuck in this pool of frustration.  This frustration leads itself to criticism.  I begin to fear that maybe it's me that's wrong. My thoughts circle around this idea like this:
Maybe that person doesn't like me anymore.
I'll bet they think I'm stupid.
I probably shouldn't post/say this.
I'll bet they think I'm crazy.
I am not successful.
I don't do anything right.
People in general don't like me.
I'm not a likable person.
Maybe I ought to find something else to do with my time.
No one will miss my blog/page anyway.
They all would rather me be quiet anyway.
I have nothing to offer of value.
Maybe, I'm not autistic.
Maybe there's something really wrong with me.
Why can't I stop from feeling so bad?
Maybe, I should delete this.
Maybe, I should delete my whole blog.
Why do I waste so much time?
I'll bet my husband is going to come home and just know I wasted my whole day on perseverating over something that is really minor.
He'll be disappointed.
I'll bet everyone is in me.
Why do I let everything bother me so much?
Why do I let my thoughts get so negative?
I wish I had someone to talk to that would understand.
I wish that I could talk to someone without feeling judged.
I wish I didn't feel like such a freak.
Maybe, tomorrow will be better.
Tomorrow has to be better.
This is embarrassing.

That is the making of pre-meltdown.  Actual meltdown would have had lots more cussing, and my anger eventually spewing the other way to others, where I would have deleted my page, blog, or at least some people.  I did go 'unlike' some pages, but I didn't do anything big.  Remembering my mantra:
"Don't do anything permanently stupid, because you're temporarily upset. "  I figure if I can hold off on any actions for a few hours, then if I still feel the same, the action can be carried out then.
So far, I'm a little calmer....