Monday, April 30, 2012

Inner Aspie to "I Wish I Didn't Have Aspergers" - An AutismPositivity2012 Flash Blog Event

Dear 'I Wish I Didn't Have Asperger's'

When I think of that statement I think about the times when I, myself, thought it.  My mind skips back years in time where my own journey wasn't always easy.  Those times, are hard to think of now.  I still have those times now where I think, just for a moment, that I wish I didn't have Asperger's. This letter may well be for me to reflect on during those moments as much as for others out in cyberpsace looking for some consolation.  This letter may be for my son, when he gets a little older and thinks 'I wish I didn't have autism' during his moments of inevitable struggle.

What would I like to say to the child that I once was and to other autistic children out there right now?  I'd like to remind them that the things that seem to huge now won't be in a few years.  I wish I'd known that when I was alone at recess, or picked last at PE everyday.  I'd tell them that it's okay to be an individual and pursue your own interests, instead of worrying if the other kids will approve.  I'd tell them, you will find a friend, a good one.  Just be patient. Do not accept 'friends' that treat you less than in order to have a friend. I'd say, you are good enough, just as you are. Repeat that to yourself until you know it to be true.  This will be the one thing, if any that I would make sure that I as a child would have known.  I am good enough just as I am.  People that are worthwhile will respect me as a person, autism and all.

What would I say to that awkward adolescent that I once was, and to the other autistic adolescents out there?  I'd tell them to just hold on.  I know it's hard right now. Being a teenager is hard for everyone, but even harder for us on the spectrum. I'd tell them that they'll get a chance to date and find love.  I know it can be lonely.  I know everyone else is telling you to be patient and the right one will come along.  I know you're tired of that cliche.  I know these words won't stop you from feeling lonely, but please let them soothe you some into knowing that it will happen.  It may not be tomorrow. It may not be next week, but please know that you will not be lonely forever.  If I had a way to tell my former teenaged self something, I'd have told myself to keep busy doing what I like, being confident with myself and the dates and friends would come naturally.  Fretting, obsessing and constantly trying to problem solve will make relationships harder to come by and quite possibly prevent them from happening in the first place.  Getting a boyfriend or friends is not like a math problem or crossword puzzle.  It can't be solved by intellectual thought.  It has to go through the natural stages to evolve.   I'd tell myself that I need to learn about meditation and find a good therapist to help me learn about emotions. I'd tell autistic teens that what others think don't matter as much as what you think of yourself.  Pay attention to keeping things in order on the inside and things on the outside will be much smoother.  Learn how to detect and handle your emotions.  This is not something that is firsthand for us.  It needs to be learned and is crucial to success.

I'd tell teens to take advantage of the internet.  The amount of support available is endless. Find other ASD teen to chat with.  Find ASD adults to mentor you.  We are here.  We've been where you are and understand.  We can help guide you and are more than happy to do so.  Don't post on Facebook or constantly tell your peers that you're lonely ect... This will have the opposite effect you are hoping for.  Find some online support group to confide in.

For young autistic adults, I'd tell them most of all, that it's okay to ask for help.  It's okay to not know things.  There is no shame in needing assistance.  Don't try to do everything on your own to prove that you can and to prove you're independent!  It takes a strong person to ask for help when they need it.  Don't drive yourself into the ground with anxiety and depression by trying to do it on your own.  Find support from somewhere.  Sometimes, with some of us, it won't be family.  We'll have to find it somewhere else.  Take advantage of disability services when and if you need them. 

What I would want any autistic person to know, is that being autistic is okay. Don't waste a minute of your life hiding away who you are trying to be someone you're not.  Do what you love, and love what you do. This will help instill pride.  Immerse yourself into positive actions and let that direct you to self worth.  Don't ever let the bullies in your life win by repeating their stories in your head through the years.  If you can't shut the stories off, get to therapy to help you.  Know, I mean really know that you have worth just as you are.  Be authentic.  Be compassionate with yourself.  You are going to have bad days.  You are going to have sensory issues and meltdowns.  Again, learn your body and emotions. It will give you a better opportunity to handle these things when they come up.  Be compassionate and forgiving with yourself when these things happen. Remember:  " I am good enough just as I am.  People that are worthwhile will respect me as a person, autism and all ." That is your new mantra.  The world can be noisy and overwhelming. Sometimes, you might feel like it's all too much, or your heart literally aches with loneliness.  Please, remember that there's many of us that share your story or care very much.  We have autism, too, or children that are autistic, or friends, and family.  You're not alone. Reach out to us.  We're here.

Saturday, April 21, 2012

The Undateables? Not quite.

Has anyone in the UK seen the show 'Undateables'?  I haven't, but from what I've seen I 'm still leaning toward the POV that it's voyeuristic and portraying the misinformed public opinion that disabled people are less than in the world of romance.  One thing I do see is that it is in the spot light and people are now talking about it.  That means that the general public is having to think about the generally accepted stereotype that people with disabilities are somehow not meant for love, relationships, and sex.  We can and we are, and do do those things.  People most often hate, or repel what they don't understand.  I am hoping this show can help everyday people empathize with disabled people in the way that they see they're not so different after all. It won't seem so odd anymore, thus removing some stigma.  Getting a discussion going, exchanging opinions and getting people really thinking can all be good things.  Humiliating vulnerable people that just want love is a where I'd see the show possibly being negative.

What's your opinion of the program?

Wednesday, April 18, 2012

Wordless Wednesday

I've never done a Wordless Wednesday post, so I thought this might be a good time to try! :) I realize that I'm not following rules by writing all these words on my 'wordless' post, but I don't follow rules very well, and am too verbose to contain myself.

This picture is Bubby's new thing he does.  It's like lining things up, but instead, it's stacking.  He sometimes will spend a couple hours painstakingly stacking legos and other objects to reach as high as he can go.  We thought this one was mighty impressive.

Tuesday, April 17, 2012

Safer To Be Alone and the Bubby List.

I said earlier in my video post that I would talk about what Bubby's teacher told me at conferences 3 or 4 weeks ago.  I am still a little emotional about it, but I think that I can make a post without crying all over my keyboard now, at least.

I have noticed that Bubby seems to not want any peers to spend any time with him in the last few months that wasn't mandatory.  He turns away any child that comes to the door.  If he does let them in, he begrudgingly plays with them, but only what he wants to play and for a short time.  I had wondered why this is so. A few years ago, he would have been delighted to have a friend over.  In fact, he asked for it, often.  This shift has been setting on my mind precariously.  I knew it had a reason behind it, and I had a feeling it wasn't a good one, necessarily.  I was correct.

I found my answer at conferences.  I sat there leaning forward earnestly in the little tiny chairs waiting to hear how great Bubby was doing.  He is usually so well liked by the staff and tends to be a favorite of many teachers.  His teacher is wonderful, just the most empathetic, warm, nurturing Grandma type you could ask for.  I was hoping for his most spectacular year, because she is just so supportive. But, his peers, it seems have noticed his differences.  She said that he 'marches down the hall like a Hitler march' (I'm guessing she means goosestepping) and it makes people stop and stare.  It makes them laugh and point, which makes him mad and upset.  He rocks in his seat and I'm sure hums, as that's his favorite stim.  He tells on every eye roll, or push he receives, garnering no level of importance for a genuine put down to a mannerism meaning they would like him to stop talking.  He tells on them all just the same.  He becomes offended by them all just the same, and she said, he keeps score.  Once you've been on the list of 'people Bubby don't like' you are likely never to leave the list.  I can understand this, because I am a lot the same.  I am more flexible and have levels to my lists, but I am much older.  She sees this as a character flaw on his part, because as she put it 'if you block out everyone who ever upsets you forever, you will have no one left'.  She also says that he does not ever partner up with any peer for anything.  He prefers to be alone, almost all of the time.  There was only one girl (it's always girls with him) that he made friends with and she was only a temporary student his year, unfortunately.

Of course, we talked to her about telling the kids that he does these things to hep regulate his sensory system, but do 4th graders really know what that means? Do they care?  We also suggested that she read 'All Cats Have Asperger's' to the class to help explain it to them in a way they may be able to explain it. His 2nd grade teacher read it to his class, but it was his class that year.  There's different kids in his class every year.  I am hoping that is they understand why he behaves the way he does that they may be more understanding of his differences.  I figure, we might as well identify them, and bring them out for discussion, because if we don't they'll come to their own conclusions about things, and they will probably be less than kind.

The part that makes me the most sad, is the wall of isolation he is putting up.  His teacher seems to see it as an inflexible thinking pattern.  A black and white solution to a social problem, that is further lending itself to more problems.  I know what it is.  I understand why it is there, and it's the reason I am so sad for him.  He has decided that people are unpredictable, and manipulating.  They do things in sneaky ways that are defined in their body language, or in a facial expression.  He is unable to read these things with accuracy.  He has decided that it is safer and easier to just be alone.He has realized that he is at the bottom of the social pecking order and will not be able to climb up.  He was probably unaware that there was one until recently.  He just knows that everyone else seems to have more info, more knowledge, more experience, more intuition than him at any given moment and he will be subject to ridicule and dislike without provocation.  I know for every time the teacher has caught someone teasing him, or bullying him, it has happened at least five times where she didn't.  He knows a truth that most autistics learn and that is most people can't be trusted.  It is safer to be alone.

I was hoping that possibly his life wouldn't be this way.  I was hoping that maybe he would have an easier time of it.  I was wrong.  People are still people, and social protocol is still basically the same.  I was much older before I figured this all out. He seems to know now at age 10 what I figured out closer to age 14, even though he has always been significantly behind me in every other way in development. He has figured out that people can lie, cheat and steal without much thought.  They sometimes don't follow the rules.  They sometims are cruel to someone without cause only to better their social perception.  These things don't make sense to an autistic person.  We would never do that.  We also don't see it coming when it's something we'd never do.  Mindblindess is such that if we wouldn't do it to you, then we don't expect you to do it to us.  The thought doesn't occur to us.

I just hope that he has left a little faith left in humanity to see that there are some good people out there. Sometimes, during the pre-teen and teen years these people are hard to find, because that's when they tend to be the most self-centered and even the most nicest teen will hesitate to put their social status on the line to stand up for the underdog. I hope he finds at least that one friend that he can share his time with, as well as his trust.

Thursday, April 12, 2012

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.

Tuesday, April 10, 2012

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.

Monday, April 9, 2012

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!

Monday, April 2, 2012

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.