Wednesday, August 31, 2011

Compassion > Judgment = True Inclusion

This morning I came across a blog post by a mother of two special needs kids about a site called Too Big. (I'm not gonna link the site, because I'm not wanting to drive traffic to it. Nor, do I care to even look at it.) The blog post is called Tides We Shouldn't Have To Swim Against .  In it the author, Julia Roberts, talks about how a site like Too Big helps spread the biased, discriminatory attitude that any of us with disabilities ourselves, or have children with disabilities/special needs face everyday.

Basically, from what I've gathered, the site is composed of pictures of kids with their faces somewhat covered that are in strollers that are beyond the typical size most kids would require one.  I already don't see how that is so funny, even if the kids don't have special needs.  What's even more, the idiots that make the site actually think it's worthwhile enough to make fun of little kids that they pay to put up a website to do it.  That's what caliber of people we're dealing with here.  I don't expect to make them understand somehow that what they're doing is not okay, and harmful.  When someone is that awful on the inside it would take much, much more than me and a few others complaining to get them to see, or care how they're affecting others.  I'm not sure that anything could get someone that is that much of a bully to change. I just hope that by saying something to others that may visit the site, or another like it at some point, we might put that little bit of knowledge in their head of the other side of what they're looking at.  That there may be more than meets the eye when you encounter something that seems out of the ordinary.  Maybe, instead of laughing and staring one ought to have a bit of compassion.  One of my favorite sayings is that 'you can't know everything about everybody.'  Meaning, that everyone has their own life, their own struggle, their own story, their own pain, their own private life and this affects how they behave and come across to others.  I find that it's best to always try to practice compassion when we encounter behavior or people we don't understand, because we can't always know the other side of the story.  It's when we look through the eyes of compassion that we can truly see the other person as they are, not who we think they are, or what attachment of ourselves we're putting onto them.  That's all our judgement is, anyway.  It's a biased belief we hold as a result of our perception of what we think we see, or don't see.

I hope that the Too Big site disappears soon due to lack of interest on the public's part.  I know that I have gotten the ugly looks when my son was younger and I still used a stroller.  It wasn't because he was unable to walk.  Much to the opposite, as he would run and was impossible to keep by my side at any given moment.  Add that to the fact that my older son was also a runner, I had to employ methods to keep them both safe.  Since, Beans was unable to even so much as acknowledge when he was being spoken to, much less follow directions, or hold my hand, I chose to use a stroller until he was about 5.  Then, I used a harness for about a year, which also garnered it's fair share of attention.  One thing I was adamant about was that I was not going to let others make me or my children feel inadequate.  I never once flinched in the adversity of stares, or kept Beans at home unless I thought he would be uncomfortable with where we were going.  He has every right to be out in public.  So, special needs parents everywhere... hold your head high and do what is best for your family even when it may not always be the most popular, or comfortable.  Inclusion means everyone.

Sunday, August 21, 2011

Back to school with Autism tips:

It's that time of year again.  We've fought the madness of the school supply isle of the local store, bags are packed, new school clothes are washed...Ready for a new school year to begin. 

If you have kids with special needs there may be a few more things to do.  I have a few tips for parents that may be new to the special ed system and are looking to make their child's transition back to school as smooth as possible.

1. Make an info sheet about your child for the school staff.

I used to e-mail this list to my son's teacher, but after getting the feeling that they sped read it once then deleted it, I decided that this year I'd print one out and give one to everyone who will be working with my son.  This sheet should include the following info:
* Your phone number and e-mail
* What your child likes to do, hobbies, ect.. (this helps to identify them as individuals, not just another student)
*What your child's strengths and skills are
*What special needs your child might have and how to identify their needs ie; I list the signs of my son when he's about to go into meltdown, or is already in one.
*List the proper protocol for dealing with problem behaviors and other issues that may come up. For my son, I list all the things that will calm him when he gets upset and how I expect them to remain respectful of him, because he can't help some of these things.

2. Make a very short info sheet for substitutes:
I always get the feeling that subs are not informed of IEPs and special needs that need to be attended to in the general ed classroom. So this year I have decided to make a very brief sheet with my son's picture at the top of it stating his name and that he has autism, and a few things to be aware of .  Brief and to the point.  The list of things to be aware of should only be 5 or 6 bullet points.  Just something to give the sub a heads up that your child has special needs.

3. Put together an info packet for the new teacher:
Sometimes, I will put together a folder of info for a new teacher about autism.  There are some teachers that want to know more about autism and I will give them a folder full of useful info.  There are some that you can tell don't care and don't want to know.  How much info to share is really dependent on the teacher's attitude.  If the teacher is not very willing to learn very much of anything about your child's disability, then you are best suited to fill the folder with as little information that is pertinent, and to the point as possible. This increases the chances that they'll at least look at it.

Do you have any tips to share?

Friday, August 19, 2011

Sense of Self:Part 3

This is a continuation of the Sense of Self posts that I have been written so far.  I'm not sure where to go with it, or what direction I'm heading.  This topic is so general and almost infinite it and of itself I feel that I could type forever and never get to a point... so I'm just gonna dive back in and start going where ever my mind takes me.

I have noticed a radical change in my 'self' as I have began meditating.  It has been something of a treasure that was always there, but I have fully captured the essence of it now. I knew that this place of mind where I could openly feel without trepidation existed, but it didn't always feel available to me.  I could catch glimpses of it out of the corner of eye and feel it at my fingertips... It seemed mostly out of reach, until recently.


But first, what is 'self'.  This seems to be such a big question that many have asked and answered.  When asked most NT (neurotypical) people will begin to describe their social roles, ie; 'I'm a mother, a teacher, a wife...'.  I'm not engaging in bigotry, or saying that they're wrong to do this.  I'm just pointing out what most say and do, so please hold off the PC squad on this one.  This answer never seemed to make sense to me.It didn't make much sense with the Asperger ladies that I have discussed this topic with, either.  I am a mother, and I like what I do for an occupation (if you can call it that) and I love being married to my husband, but is me? Is it what defines me? I have to say no.  No, it isn't because I existed before my husband, my children, my career. I was me before they were around and if they were all to disappear tomorrow, I'll still be me.  So, if 'me' isn't that, then, what is it?  That was the question that I set to find out.  That was part of the reason I ended up on the path to Buddhism and Mindfulness.  I needed an alternate explanation to the riddle 'what is self?'

First, before I could move onto defining myself in any way I had to learn self awareness.  This was a feat for this aspie. I had to know what I was feeling, and when.  I had to identify my emotions and my wants and needs.  I had to learn about me, then let go of me.  I learn to recognize the little twinges of desire and the small nags of irritation.  Where I carried my anger, where I felt my sadness, where I stored my breath in anxiety.  This was all parts of me.  Parts that I didn't know existed within me in such subtle forms.  This journey of self discovery was overwhelming, but exhilarating.


Once, I could label my emotions and what they meant to me I could now begin to learn to let them go.  My awareness now moved to time. Nothing is permanent.  This moment is no more important than any of yesterday or tomorrow.  What meaning I attach to it is one that is arbitrary.  One that is made up and only experienced by me. Don't believe me?  Think of a time where life was difficult. When you look back things don't seem so bad, do they?  You may even have thought that you'll never feel better, or different, but you did.You have. While there is no doubt that we can and do suffer as humans, it's the attachments that we tack onto these emotions that we struggle with.

I feel that my self, me is defined by what I do,what I say what I am in every moment.  It's never static.  It's the choices I make that make me in this moment.  My values and goals and how I choose to fit them into my life, is me.  Every moment of everyday, I get to choose who I want to me to be.  How I respond to stranger at the store, or my naughty child, or frustrated husband.  My actions at that given moment define me.  I'd like to think that I am a kind, generous, supportive, person, among other qualities.  Before, I react to another person, or speak/act at all, I try to pause and ask myself if the person that I want to be is supported and defined by what I'm about to do.  If I say no, that wouldn't be kind, generous, supportive, ect... then I have the option of behaving in a different way.  One in which the me that I want to be is who that I am.

Thursday, August 18, 2011

Things you wish adults knew when you were a child. The following are direct quotes from many adult autistics.

Now that it's time for school to begin I thought that I'd share a document that I put together a couple years ago about things that adult autistics say they wished their parents knew when they were children.  I always print and share this with my boys' teachers and principls. They say that it's helpful in understanding them.  Please, feel free to copy and share this where ever it may be useful.  I'm not a computer wiz, so I was unable to convert the Rich Format to HTML code on blogger, so this is in plain text.  The original document  (WHICH CAN BE FOUND HERE IN PDF) is much nicer and easier to read. You can also ask me and I'll send you a copy via e-mail if you'd like.  I had a lot of fun collecting all these tips from my fellow spectrum friends on WP, FB, and other places.  Many of us are more than willing to share and help when asked.

Things you wish adults knew when you were a child.
The following are direct quotes from many adult autistics.

"When your kid forgets to do something they said they would do--they really did forget! I still do. Smile

My dad always urged me to "buckle down". Neither of us knew at the time that my "buckle" was broken, and although I had the best intentions, I didn't know how. I wish I had had specific, detailed, step-by-step directions on how to get those things done that I didn't know how to even start.

Don't expect your kid to infer anything. Just tell them. They are not ignoring your wishes or your needs. They just don't get it. Tell them and be specific. Tell them when they are doing it right, and if they aren't, calmly point out what needs to change. And if they overreact to that, just let them. In the years to come they will pick up some moderation. (Some.) It's not personal."

"Im still very forgetful, AND I don;t clue in to non verbal cues, so whoever thinks Im a "creep" because I dont clue in, they should do some research first before jumping to that conclusion.They would find that I would do as they have wanted if they clearly spelled it out for me verbally."

"Don't assume that just because I'm not looking at you that I'm not paying attention. I often will concentrate on what you're saying better when I'm looking away from you.

P.E, was torture for me. I am not coordinated, nor will I ever be. Some of my worst memories come from P.E. class. It really hurts a child's self-esteem to always be the last one picked for teams. There has to be another alternative rather than to put ASD kids through that."

"Always be positive!
Treat them just like any other child- they just want to be normal.
Give them special one on one attention. I thrive for that!

Dont hold them back- it keeps them from their full potiental. They can susprise you."

"I would always draw or play with the stuff in my desk or something during class, but I still heard what the teacher said. If I tried to just listen and sit still, I would drift off and start thinking about other things, because it was not stimulating enough to just listen.

Also, sometimes if I didn't have a sufficient explanation for why I should do something, I would refuse to do it. So I think I would have done a lot better in school if the teachers had explained a lot more, because they often didn't have good reasons.

And I think something else that would be nice is if teachers would sometimes tell awkward kids what they might do to not get teased as much. I don't know, maybe they're not allowed to do that for some weird reason, but I think it would be nice, since they're the ones who see the teasing happening."

"Don't attempt to make me look at the teacher when I am trying to pay attention. I can do one of them.

Don't make "choose a partner/team" group work mandatory this does not only refer to PE. It is horrible if everyone finds a partner immediately and I stand there and everyone does not want me.

The noise during recess was far more stressfull than the classes. I had to calm down from recess in class."

"
I don't always know what I'm doing is impolite, and I can't always control it (ie. laughing at inappropriate times).

Sometimes I don't speak because I REALLY don't know how to answer the question, and the MORE you try to force me to answer, the more intimidated I get, and the less likely you'll get an answer.

I get into a lot of trouble for defending myself in fights started by someone else, because I'm not as verbally skilled, and can't talk myself out of trouble like others. Don't automatically assume I'm in the wrong just because I cannot come up with a convincing -story-.

I don't always know when I'm being impolite, I just say what's on my mind, please don't make a scene out of it, just explain to me my mistake in private.

Sometimes when made to talk to the entire class, make a presentation, or when told to share ideas with the class, I get nervous, I stumble over my words, and I can't think clearly, which is why I usually cut the speech short, it's not because I'm not participating, it's because I'm terrified I'll make a mistake, and get made fun of by the whole class. You questioning me in front of the entire class as to why I won't participate makes me feel like crap.

Please be direct in your speech, don't use metaphors or sarcasm when asking me to do something, 99 out of 100 times, I won't get what you're asking of me."

"So many things...

Not stopping doing what I was doing when I was told to stop doing it.

Doing the same thing over and over and over despite being told not to do it.

Not looking at people when I spoke to them.

Speaking to people in a way that they interpreted to be condescending / patronising.

Not being able to make out what the teacher was saying because there was too much background noise.

Doodling constantly during lessons.

Doing things I wasn't supposed to be doing because I had finished my work and was bored.

Doing things I wasn't supposed to be doing because I didn't find the work interesting.

Not understanding things because I didn't understand the way the teacher explained them.

Not understanding things (especially maths) because of thinking too deeply about it.

Not liking certain lessons because I didn't like / get on with the teacher.

Never reading any books (I seem to have a bit of an issue with reading and tire of it very quickly).

Not understanding what behaviour was appropriate for my age.

Not having a clue what people were going on about when they started fancying other people and all that.

Not realising that I needed to be proactive to make friends.

Team sports were always a problem for me.

Also dance and aerobics involving copying moves off others was and is still a major problem for me.

That said, I'm totally fine at certain sports, such as running (but not sprints), swimming, climbing, dance (making my own moves), javlin, discus, shotput, cycling and also going to the gym don't cause me any problems. I think the key with sports is to stick to what you're good at. "

"Don't talk down to me (when I was a child and people used that sing-song tone it made me cringe)
Don't assume I ought to know something-inform me politely
Don't assume because I don't approach you that I want to be alone (that's a tricky one-sometimes I do) I don't know how to ask to be a part of a group-I'm afraid of rejection and need to be asked.
Don't assume I'm lazy-I can't focus and trying makes me very tired
Explain to me what I did wrong socially without attacking me"

"
I remember when I got in trouble for something I'd get the stern "look at me when I'm talking to you!" and dread it.

Negative reinforcement only pissed me off. I still have a grudge against my grandfather and he passed away over a decade ago. The horrors I went through with him...

I had a horrible time in school to the point where I was scared to death to go back. At that age I had no idea what to say, so I just cried. If only they knew how emotionally damaged I was. My grandmother said she could never understand why I flipped out. My mother, on the other hand, picked up on it. I ended up moving in with her after that situation. I changed schools, but I still went through a lot of problems.

Being constantly nagged to do things never helped me want to do them. Asking kindly would have made a world of difference, but parents don't think they should have to do that. Plus, back then, we had no idea what Asperger's was. My mother just said I was eccentric.

I remember when I first heard the band Rush. I obsessed over them for months. My mom thought that was insane, but their music was so complex and intelligent that I couldn't stop listening. It would have been nice to have a diagnosis back then, cos so much emotional stress could have been avoided. I wouldn't have been yelled at for my obsessions and odd behaviors."

"Maybe true for all kids, but when a kid says there is nothing wrong, they are likely lying.

The only way to get a kid to tell you the truth is to become someone they feel they can trust. Only then MIGHT you find out what's going on inside of them."

"Even though my parents knew that I was on the spectrum, I wish that they didn't do these things:

Things would have gone a lot more smoothly, if they didn't spank me. The only thing that I've learned from those spankings, was that it was okay to hit and punch the bullies, when they picked on me, and called me "retarded". They never did that again, though.

I wish that they would have let me talk about my special interests, at least at home, instead of getting angry at me, for doing so, no matter how much I talked about them. I didn't talk to any of my peers in high school, because my mum said, "As soon as those kids find out what you like, they're going to bug you about it!" That's what led to all that posting about Routemasters at WP in 2006. I've kept that obsession a secret from everybody that I had social contact with, off-line. One member tried to make me his project, by training me not to post about them, so much. If he only knew what I had to go through, and the many headaches, colds and flues that I've endured, just by keeping my special interests to myself, for so many years, he wouldn't have done that. My parents wouldn't have done that, either.

I also hated that "Look at me when I'm talking to you!" by my father, who I didn't trust at all. If he knew that I didn't trust him, he wouldn't have forced that eye contact. He would have treated me in such a caring way, that would have made me feel that I could trusted him and felt at ease with him to begin with, and than I would have given him that eye contact.

Some people on the milder end of the autistic spectrum appear to speak with a foreign accent. Mine happens to be the London Cockney. My parents spiritually abused me the entire summer that I was 12, by telling me not to speak with a nasal sounding voice. The following spring, I've told my mum, brimming with pride, that I have a bit of a Cockney accent. She said, "We can fix that." She changed her tune in a hurry, after most of my teachers wrote that I won't speak to my regular classmates, on my first high school report card. She asked, "Did anybody say anything about the way that you speak?" I said, "Yes...both you and dad did, two years ago." She said that she was sorry that she caused me so much pain. I've started talk to my mum and dad nonstop, again."

"it would have been really nice if:

my mother accepted that I'm a literal thinker, instead of getting frustrated and criticizing me, as if I were choosing not to understand her vague instructions.

my mother encouraged me and gave me some praise for what I did right, instead of focusing on what I did wrong and going on and on about it.

schools made kids like I was safe, which probably means keeping us away from bullies. it wasn't so much of a problem in grade school, but it got worse and worse as I got older until I just quit going to school.

schools provided behavioral classrooms as a matter of course, to assist kids who need coaching in personal hygiene and social skills."

"Don't sit me by the loudest kid in the class.

There was a boy in my class that must've had ADHD (severely) and he was always making noise, and touching people, and running into them. Those three things are probably at the top of my list of worst sensory issues. It seems that the teacher always sat me by him. My grades went down, because I couldn't concentrate, and my anxiety skyrocketed. It got to the point that I couldn't sleep at night, because I was so afraid of having to deal with this kid at school. He knew that touching me bothered me a lot, so he did it even more, because it was fun to him see me have a meltdown. I don't see how the teacher didn't notice all of this. I've seen this happen with my 7 yo son, too. I don't understand why the teacher can't make more of an effort to keep these kinds of boys as separate as possible from my son.

Oh, and it never even once occurred to me to ask for help with this issue. Sometimes, you have to pay attention to what 's going on with ASD kids, because they won't think to tell you about their problems. If someone would've thought to ask me, I'd probably have told them how much it was bothering me, if I could find the words, and felt comfortable talking to the person."

"Even when an autistic child is comfortable about telling something, it may still be impossible to ask the child about certain things. Often these things are information, skills or feelings the child experienced or learnt in another situation or another environment (school, home, kindergarten, club).

It is perfectly possible that if a teacher asks an autistic child about home it does not seem able to tell any or correct information. It is also possible that a child wants to tell something about school to his or her parents but simply cannot.

I'd also add in specific:

An autistic child may be perfectly able to do something in one situation and/or environment, but truly unable to perform the same skill in a different situation/environment. That everything from knowledge to learnt skills are only available to the child in certain situation is a difficulty that can come with autism."

"I wish that my teachers had realised that having hundreds of kids sitting in grouped tables, chatting away and having to cooperate was overwhelming for me. I'm willing to bet that some of my relatives (had they been young children during the 90s) would've had trouble coping with this set up too. Back in the old days it was single rows of silent desks. Back then, socialising was strictly a recreational activity.

I wish they could've realised how the school environment made it difficult for me to learn.

I wish they could have realised that my strengths (observing, analysing and recording the physical environment) were not being put to best use.

I wish that they could've realised that I was a caring person who feels deep emotions, but was socially clueless, so inadvertently offended people. I can read some facial expressions, so I wish they could've realised that I was not a completely "cold" asocial "monster".

I wish they could've realised that my out-of-sync movements during PE and dancing were not willful: I genuinely couldn't sync up with the other kids. I also felt an insatiable urge to do my own thing and develop my own style.

I wish they could've realised that I wanted to join in.
Actually, I wanted to join in and lead the activity in my own style and wanted to teach the other kids things without them telling me to "Shut up".

I genuinely wanted to be friendly and not upset people.
In fact, I was very concerned and felt very upset when I had inadvertently upset others."

"The whole choose a group or partner for a group activity was the worst.

Bullies are also a horrendous problem and a zero tolerance policy needs to be in place to deal with them. I remember being told everything I shouldn't provoke them (I didn't) to I need to stand up for myself (kinda hard when I was barely chest height). Teachers need to realize that yes some bullies have problems at home or something and act out by hurting other kids, some however are just sociopaths. There are no differences to work out (I've also been told to work out differences with bullies, seriously how stupid are some teachers) some bullies just like hurting other people and aspie or autistic kids make excellent victims for them. (I have very strong feelings about bullies)

I had one class where the teacher played music in the background, while the music was nice it was rather distracting. That might just be me though.

I actually calm down by moving, walking/pacing in particular. Trying to hold still just makes me agitated.

Just because it might take me a while to form the right words to answer a question doesn't mean I don't know the answer, or if I'm in trouble for something, that I'm lying or making a story up. I'm still working on ordering my thoughts so I can communicate properly. (I have a vague memory of being told something along the lines, don't sit there making something up, just answer the question) "

"This is a tip that goes for me:

If you are explaining something to me then ask, 'do you understand?' don't assume that my answer 'yes' means I DO understand. My hearing can only pick up certain words of speech (auditory discrimination issues) so my mind puts two and two together to get 3 most of the time! If necessary, write the thing down. This way it may be more comprehendable. Hope that helps!"

"That strong staff leadership and a sincere inclusive ethos can make all the difference.

That clear rules and guidelines can help a person know "where they stand" and what to expect.

That inconsistencies and "rules" that aren't spelled out clearly are confusing."

"That when I repeatedly said, yelled, and pleaded for them to leave me alone, that they did so instead of continuing to yell at me through my closed door. They caused so many meltdowns, rages, etc. that way. That's often an aspie's only way of expressing that they're becoming overwhelmed. It's a last-ditch effort to avoid losing control. If parents don't recognize and respect this, they will be largely responsible for the resulting "bad behavior". Parents of people with Asperger's need to learn when to back off and allow them to calm down.

People with autism frequently respond with more basic emotions than other people. Harsh tone of voice or a demanding attitude will often result in a heavily defensive response. If you want your message to be received, and to not result in the opposite effect, it is important to remain calm and polite. Whereas a non-autistic person may take a harsh tone to indicate you mean business, an autistic person generally interprets it as an attack and responds as such. This can result in an argumentative or hostile response.

People with autism frequently need to mentally prepare themselves before doing something, and also frequently have a poor concept of time. A timetable of "Now" causes stress, frustration, and anger. It is far better to give them a few minutes' warning and / or early reminders to allow them to prepare and be ready."

"The one that stands out is I wish my parents knew that just because I asked unusual questions about sex at a really young age didn't mean that they should panic and ban me from reading encyclopedias. "

"As a child, I always wished that the people who said, "You know you can always talk to me," understood that just because I didn't talk to them, didn't mean that I didn't want to talk to them. I couldn't. I had (and still have) problems organizing my thoughts and getting them out. Just be patient and I will do my best.

This one is especially for the teachers: when asked about my emotional state and I say, "I don't know," I really don't know. It's almost impossible for me to know what the heck I'm feeling and it is nearly impossible to articulate it.

Usually when I lose it, I'm blamed for my destructive behavior and never allowed to explain myself--even if I could. And never let your child feel guilty for something that was not their fault, nor let your child feel guilty for what they do not understand because that guilt will stay with them forever.

Also, most Aspies tend to have a long memory. My first memory is being in a crib and crying for someone to come to me. And then I heard my mother's voice saying, "Shut up!" To this day, I can't get over that. "

"I wish my parents knew that stimming is natural and important to me; that I need to do it."

"I recently made a list of things for my son's teacher that I wish my teachers had known. I got so tired of being told not to be a tattletale about things that were CLEARLY wrong, and I stopped and shut down with talking to my teachers altogether. "

" if I put my hands over my ears when you start whistling a song to yourself, or you want me to sing a song with you, or anything of the sort, know that maybe I just *can't* do it. It's possible that the whistling actually hurts, or that the extra auditory input of the sound is just too much. And quit tapping your pencil on the table if you want me to a) be sane and b) focus on anything else!"

"to consider face blindness and keep a 'signature' about themselves so they can be recognised and to use gesture and objects where possible and speak in bullet points."

"In a tense or stressful situation I may start to shut down. This often means I don't know how to handle or process all of the stimulus around me. Help me to see the light at the end of the tunnel and understand how I can be involved in the event."

"As a school child my world was hard enough and then I entered that huge empty echoing place, with so much noise I could not hear, I could not focus and impossible to read a blackboard if I you dare look, because if I did look up, someone laughed, made fun, yet more abusive. At times so unbearable, but no place to hide I had no choice but to endure. What the other children enjoyed and talked about, made me feel more of an alien.."

"I wish that teachers knew that I needed extra guidance. I was pretty much dropped off at school at 5 years old and expected to 'figure it all out'. That might work for some kids, but it just made the world a chaotic place for me for a few years there. In fact, what should have been done, was indeed done later when I was 9 years old... I went to a new school and one student there was asked to show me around and let me know how things worked, and where everything was. The difference that this made was like night and day. I thoroughly enjoyed my time at the new school, and excelled as a student as well.

I had a hard time making sense of the big picture as a child. I could figure out what was expected of me from moment to moment, with a little effort, but understanding how each part of my day made sense on a daily or weekly basis was impossible. A kind of tunnel vision with regard to my own life. A very narrow understanding. Experts tend to say that Asperger's children need structure, maybe these sort of difficulties are the reason.

I also wish that my parents knew that I needed personal, private time (grew up in a large family), and that noise was something I was extremely sensitive to. The home life that I had growing up was a pressure-cooker environment that made me a more anxious adult, I think."

"I wanted to have things set, and to stay the same. I did not like too much variation, fortunately perhaps in my childhood there wasn't much. Things are different today. When i was working as a teacher aide, my supervisor told me of an aspie boy who she had been helping. Technology classes at that school were taught in 'blocks' of ten lessons, then they were moved onto a new subject. For the first block, she took him into the room beforehand, introduced him to the teacher, who showed where everything was, told him what would happen, etc, he knew what to expect and the lessons went well. Unfortunately, she didn't think he would need the same when they moved on to the next block. He was so overwhelmed he spent the entire first lesson of the new subject sobbing in the corner of the classroom. Big lesson for her, and the other teachers."

"The biggest, please don't shout at me, if you do say sorry, please don't make me a spectacle, be kind to me, make me feel good about my differences not feel subnormal and less than human.   Listen to me.  

If just these things would have happened my younger life would have been less retched and less full of pain."

"I have difficulty answering this as I would say my difficulties emerged in my teens and further on.

I imagine (from the viewpoint of an older person) that an early diagnosis could have been helpful and I needed training not to take everything literally and to understand that authorities were just fellow human beings not enemies.

(Turning this around I suppose I wish teachers knew that I regarded them as enemies not because I was inherently nasty (although I confess I could behave that way to teachers) but because I felt they were trying to impinge on me by forcing useless information into me - I needed explanation as to why things were happening which was not of the "because I say so variety")

I failed to understand how teachers could make rules and then dislike people who told them other people were breaking the rules - did they or did they not want the rules kept, and were they or were they not responsible for enforcing them?   I still find this one a bit puzzeling. I suppose nowadays they try and get buyinto rules by getting the students to work them out at the beginning of a year.

I think the most useful thing I could have been taught was not to take books literally - that I needed to prioritise what I could learn  from life over what I could learn from books. I expected my life to play out like a novel and was constantly disappointed when it didn't. 

I think aspie kids probably need to have time spent giving them details of different points of view."

"I wish that everyone wouldn't have made such a big deal about my eating habits.  I still don't like most my food to touch, and I still eat only one item of food at a time on my plate.  It's not worth hassling a kid over.  I also have sensory issues with certain foods, mostly because of the way they smell."

I also wish that my parents would've taken my other sensory issues more seriously.  If  an autistic child is telling you that something is bothering them (that relates to one of the senses) take them seriously.  Don't accuse them of being over-exaggerative."

Monday, August 15, 2011

Autistic Sense Of Self: Part 2 Pronouns and Consciousness

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

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

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

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

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

To be continued...

Sense Of Self Part 3

Friday, August 12, 2011

Playing the Asperger's Card

As a person with AS I know that the level of severity is different in different areas for different people who are diagnosed with Asperger's.  However, I have noticed a trend here lately with AS males specifically who do things that are illegal, and wrong, then attempt to play the autism card.  No.  Not okay. This Guy for instance. He is on his way to being a serial rapist and he cries Asperger's.  I'm sorry, but since when did AS damage one's ability to know that it's not okay to run down the street sexually assaulting women?

There's been other stories I've heard of lately that I'd probably incite a voracious argument on my blog if I were to name them, due to my less than popular opinion on them. I will say in general, if one has at least an average IQ and has Asperger's then you have the ability to know right from wrong and to control your impulses toward your obsessions. Having a special interest in something doesn't make one excused for the laws that the rest of society has to follow.  I also find it damaging to use that as a defense, because it does nothing for inclusion and understanding of Asperger Syndrome.  It paints us as a group of unstable, impulsive people who might at any minute do something immoral, or illegal if it is a part of our obsession. This is simply not true of all of us.  These stereotypes are harmful.


Thursday, August 11, 2011

*The Most Versatile Blogger*

One of my favorite bloggers over at 30 Days Of Autism has bestowed upon me the honor of the *Versatile Blogger Award*  I very much appreciate the mention. Please, check her page out.  It's a very well written, blog with a plethora of information about autism put together by a lady named Leah Kelley who is a mom of a child with autism and a teacher for regular ed and special ed students. She has lots of experience to share is a very kind, generous lady.

Well, the rules for the *Versatile Blogger Award* is as follows:
*Thank the person who gave you the award and provide a link back to their page.
*Share 7  things about yourself
*Pass this award to 15 blogs

So... here we go.  Seven things you may not know about me:
1. I have 4 tattoos. One covers a good part of my back and a part of that one is a peace sign that is on the back of my neck.  Inner peace is very important to me, and always has been.

2. I never went to school beyond the 9th grade.

3. I talk out loud to myself all the time. *blush* This drives my 13 yo daughter crazy.

4. I rarely call anyone I am close to by their given name.  I make up names and that's who you are to me.  I also make up words to describe things. My household has it's own language that no one on the outside would understand.

5. I spend way too much time on-line writing reading and researching. The internet is also how I socialize.

6. I NEED to learn and acquire new knowledge like I need to breath. It's an obsession and I can never know enough or indulge enough in learning about my special interests and other similar subjects.

7. I could live on beef jerky and cherry cheesecake. <3

And Now, without further ado, here is my nominees for Most Versatile Blogger .
1 AStrangerInGodZone

2.  Mind Deep

3.Raising Asperger's Kids 

4.Gnus, Wombats, and Ducks


5.Therapy Worksheets

6.  Look Me In The Eye 

7. Tiny Buddha

8. Posivity Blog

9. Harpocrates Speaks 

10. The Autistic Me 

11.Autism Blogs Directory 

 12.Jens Voice 

 13.Beck Institute Blog 

14. The Residential Autist 

15. Springingtiger's Blog 

Tuesday, August 9, 2011

Conversations With Bubby

My nine year old, mildly autistic son says the cutest and funniest things.  He is well known around his school by the teachers and staff for his little comments. I thought that posting his Bubby-isms would be a nice addition to my blog and share some of the happiness he brings to my life.

Yesterday while he was watching iCarly he came up to me and this conversation took place:

Bubby: Do you know what I would call a web channel  if I had one?
Me: No. What?
Bubby: The World's Cutest Bubby. I am cute aren't I?
Me: Yes. you are.

Also, last year whenever he didn't want to do something that the teachers asked him to do he would look at them straight faced and serious and say:
" Do you  really want to see a cute little boy cry?"  lol I don't think it ever got him out of any work, but it sure was funny.



Monday, August 8, 2011

Autistic Sense Of Self

A few years ago I was watching an informative piece on TV about the development of autism.  One part really stuck with me that made a revelation in my mind that has been rattling wondering what it could fully mean.  I felt I was on the verge of a vast and complicated canyon full of information that would keep my ever thinking brain wrapped up for some time.

They spoke of a child being able to know they were a separate being from their surroundings and know that their reflection in the mirror was indeed them. This milestone should be in place by 9-12 months in most typically developing children.  The way this was tested was that they put a dot of lipstick on the baby's forehead and let them look at themselves in the mirror.  If the baby knew that the reflection was of themselves they would try to wipe their forehead to get the dot off, or at the least investigate the mysterious thing on their face that doesn't belong.  If they were still self unaware they'd try to wipe the mirror, signaling to the adults they were not aware of the dot being on their own head.

So, this was interesting, as children with autism don't seem to have this ability, at least not until much later.  I then thought that of the fact that most children on the spectrum (and some adults) don't refer to themselves in first person.  This is now being backed up by science using an FMRI to analyze the parts of the brain autistic individuals use to process language referring to self.

The subject of Sense of Self came up in a forum that I frequented and I have since brought it up in several others, as it's one of infinite interest to me.  It's always the females on the autism spectrum who delve in to discuss the subject of owning one's self and what this might mean to us, vs typical people.  The males almost never participate, even as the forum pages grow sometimes into the 20's as us ladies philosophizes.  Sometimes, they might poke their head in, announce they don't know what in the world we're talking about, and make a hasty exit. (which is another facet I'd like to explore- do males on the spectrum have less sense of self than females? If so why?)  Of course, the case may be that males in general are less inclined to engage in debate about what constitutes self.  My husband certainly did not have any desire to discuss it at all with  me. 

I'd like to break this subject down into several posts, as I have a lot I'd like to say on it.  This way I am not posting a novel of a post for everyone to read, which you won't due to short attention spans or time limitations.  So, if you're interested, please stay tuned for part two of Autistic Sense Of Self- Pronouns and Consciousness.

Saturday, August 6, 2011

Finding Time For Peace

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

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

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

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

Police Beat To Death A Mentally Ill Man

I came across a disturbing event recently about a homeless man with  schizophrenia being beat to death by six (count 'em SIX) police officers after it was reported that he was breaking into cars. FULL STORY HERE.

I cannot even begin to describe how disgusted and infuriated that I am at what this man went through.  I know this isn't about autism, but as far as I'm concerned it could have easily been so.  It doesn't matter, no one deserves to be treated this way. I'm also quite certain that this incident would have gotten no attention and no consequence would have come of the cops if several eyewitnesses would not have caught the whole thing on video.  I am fairly certain that there would have been a good ol boy cover up and business would have gone on as usual for these poor excuses for police officers.

During training, officers are trained in MANDT procedures.  I can't recall exactly what the acronym stands for, but it's basically training on how to safely restrain another person with minimal harm to either the officer or the person being subdued.  It's very basic procedure and anyone working with people that may become dangerous and need restrained is usually trained in this.  One officer should have been able to easily subdue this man and cuff him.  There was no need for the excessive force that was used on him.  No need for six officers, and most definitely no need to be beat while being tazed.

Also, my next point...  I didn't watch the video.  It is on some of the news articles reporting this incident.  I can't watch disturbing things like a man being beaten to death in real-time.  My brain goes almost into automatic fear driven meltdown, as is common for those of us on the spectrum.   But, I have read descriptions of the video and from what I heard the suspect was screaming for his father and a few other out of place statements.  Police officers are supposed to be trained to be able to pick up on cues that says a person may not be in their right mind, or an Emotionally Disturbed Person.  They are supposed to take special precautions with an EDP, instead of just treating them as defiant.  This obviously was not followed.

Apparently there were several bystanders and some journalists have criticized their inaction.  Even comparing it to THE MILGRAM EXPERIMENT    .  I felt this is an unfair judgment placed on these horrified onlookers who at least stuck around to take video.  The Milgram experiment was not conducted with an actual authority figure such as a police officer, nor was it comparable due to the nature of who was doing the harm.  It wasn't the bystanders who were controlling directly, or indirectly how much pain the suspect was subject to.  I do feel that if they could have pushed a button to stop this man's suffering, they would have.  I feel THE STANFORD EXPERIMENT   would be more apt to describe the behavior seen in this awful situation, especially with the officers, who are totally, TOTALLY to blame here.  The buck stops there.  I'm tired of hearing the media trying to stir up drama by trying to find out who could have done what differently.  The people who perpetuated this heinous act of murder on a defenseless mentally ill man, those six officers, are who is to blame.  I hope they are not let back out into society as officers to do more harm.

Wednesday, August 3, 2011

How do you respond to strangers about your child's (or your own) autism?

I have been running into a scenario more frequently as my boys grow older and begin to stick out a bit more to people we see everyday.  The most frequent is the well meaning waitress or cashier who keeps trying to engage Beans in a conversation.  I feel that I have to say something, because he obviously isn't going to answer them, or even acknowledge their existence.  I have a feeling some know that he's different before speaking to him, but try to anyway.  I think they want to be nice by acknowledging him, but don't want to ask me why he's different.  I will eventually tell them that he's autistic and nonverbal.  They usually say something about how he's beautiful or cute.  I'm not sure if that's how I'd like people to respond, but then what IS the protocol for that situation?  What would be the proper thing to say? What is preferred by most parents of autistic kids?

I rarely say much about Bubby's autism.  He is verbal. Not fluently so and is often extremely inappropriate, but verbal enough to seem to not need an explanation to complete strangers. He also gets angry when I say anything about his differences, so I tend not to out of respect for him and his own preferences.

How do you respond to the awkward stranger encounter in regards to your child's autism and what is and isn't helpful reactions on the part of others?

Monday, August 1, 2011

Hate Crime?

Slur Wounds Mother Of Autistic Man

I happen to think that yes it does count as a hate crime.  Why wouldn't it?  Is it because it's less PC to say the R word than the N word for blacks or F word for gays?  Using the R word is just as hateful and demeaning as the other words.  It's about time we as a society realize that.  Words have meaning and anyone who says things like 'oh that so retarded' in my house gets corrected.  When one attaches a negative connotation (reatrded = anything bad or undesirable for instance) than being reatrded or as I prefer to call it intelecctually handicapped takes a form of less than. Think about it next time you utter the slur Retarded about something you find bad or stupid.  Think about how that word being negative makes people that are that way seem less than to society and thereby less dignified and less deserving of the same human rights the rest of us enjoy.  Think about if it was you that was in that position.  So, yes....that was a hate crime as far as I am concerned and I think it's sad that law enforcement still in this day and age thinks differently.

Oh, and as a side note, I get a little irritated at people who have children or adults on the severe end of the  spectrum who  vehemently deny that their kids are 'retarded' as if it were something bad or undesirable.  Bean's doctor report states that he's retarded, though I am not sure that's correct.  Not because I feel being intellectually disabled is such a bad thing, but rather due to his obvious inability to communicate any knowledge he may have. It may or may not be valid, but either way he deserves respect.