Wednesday, December 28, 2011

The Public Face Of Autism

I don't have time for an incredibly well written, witty post.  With this kids still on holiday break and hubby at home the last few days my time has been spoken for.  I do however, have a small favor to ask everyone in the autism community.  See that picture above the post?  Stop using it as a stock photo for autism. Please, just stop.  It is degrading.  It is humiliating.  It is stigmatizing.  It is perpetuating stereotypes.  It doesn't represent autism.  It doesn't represent anything other than outdated, misconceptions of what autism was thought to be. I'm tired of seeing it attached to 1/3 of every news article, or otherwise information about ASD. Do you want people to treat your autistic child with respect, love and kindness? Sure you do.  We all want that for our kids. Then, please portray them as possessing those qualities and deserving those things. Insist that others use respectful images and words in association with autism.  No, this doesn't mean that Autism is a bed of roses and always should be spoken of as such.  Just remember you are the ones that are telling the world what it means to be autistic.  Ask yourself before sharing and speaking... is this a representation of how I want others to view my child/loved one?

                                         Thank you.

Sunday, December 25, 2011

Merry Christmas




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


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

Sunday, December 18, 2011

Accepting Autism

Yesterday, I posted a video about Adults with Autism that the wonderful people over at Rethinking Autism made.  It isn't new, but seems to not have been circulated as much as I wish it were.  We really do need to rethink autism. We need to rethink how we think about it, how we talk about it, how we feel about it, how we treat it, whether we treat it, and so on.  We need a discussion that is frank, open and really holds people with dismal opinions accountable for these opinions, these half truths, these myths they spread to scrutiny.  We need people to think about what they say and how these things affect those on the autism community.  So many times,I think people think that the mother on the pity potty about how hard it is to manage autism, how vaccines stole their baby, how they cling to false hope that their child will miraculously recover, on and on... but we don't challenge her.  It's her opinion, we say.  It's her right to believe it, we say, but what about autistic rights?  What about the right to be considered a full fledged human being with with a full experience of life just like anyone else?  Their kids will be adults one day.  They will still be autistic. You don't recover/cure from neurological differences.  The stigma they stick their kids with today, will be their kid's burden to carry tomorrow.  When I wrote about how I value my son Beans just the way he is and how those we associate with seem to see his potential as well.  So, today in this post I'd like to share another video from Rethinking Autism:

Friday, December 16, 2011

Get to Know an Autistic Adult

I'm the one in the black dress at 1:00 on the video

Reminders from NT-land that I could do without

Yesterday, I received another e-mail newsletter from the regular ed. 2nd grade classroom from Bean's school.  I guess this is due to inclusion, but he is rarely in the regular ed room.  He is in a self contained, autism only classroom due to his level of need.

I am usually not one of those moms who gets upset about what other kids can do compared to her own.  I didn't cry when my boys were diagnosed, and I've never ever came even close to crying during an IEP meeting.  Why would I?  I remember when I did the Parents As Teachers program (early childhood program for babies and toddlers) part of that was regular Denver II screenings.  My boys failed, Beans totally. Bubby just screamed through most of it, lending me the 'most patient parent I've ever seen' moniker from the kids' pediatrician and the PAT lady.  I sat there quietly as they'd struggle to do tasks, or even act as if no one was even speaking to them at all.  I was told that I was the only parent she'd ever seen that did not intervene and try to do the tasks for them, or keep interrupting the tests by insisting my kids CAN do this or that task.

I insisted that if I were to sabotage the results in any way, then it would not be a true measure of their ability, and besides I had no stock in their developmental tests.  As far as I was concerned every child developed differently, and it was no reflection on them or me if they were behind.  I have no reason to live vicariously through what my kids do.  We are separate.  I guess, that if I had compared my kids to other kids more often, then I would have noticed their autism earlier, but that's neither here no there at this point.

My point is in this post, is that I can't help but feel a little irritated, and sad when I am reminded weekly of what others kids Bean's age are doing.  The regular 2nd grade has spelling lists.  I'm listening to his ABA therapy and they're working on holding a crayon correctly and coloring in the lines.  The regular 2nd grade had a food drive.  Ian has a goal of sorting items of food, clothes and now toys to different bins.  They remind the 2nd grade class to not chew gum in class.  My son chews electric cords, computer chairs, and obliterated my laptop cord by chewing on it.  Nothing can be left out in his reach, or he will eat it.  He has chewed up a good portion of Bubby's DS games, just because Bubby forgot to put it away and left it by his bed in the bedroom they share.

I know that it is customary to send special ed parents newsletters from regular ed classrooms, because most of those kids are somewhat included in those classes.  I have watched all the kids that Beans started with in preschool in his autism class learn to sign, use PECs, speak, get potty trained, use utensils, and yes, even somewhat get included into the regular class for their age.  In fleeting moments it makes me wonder what I've done wrong, but then I've met the other parents and know for a fact that they don't provide their child with more than I do with mine.

However, to end this post on a positive note, I have been told by most of the people that have worked with him,one on one workers, paras, teachers, ect.. that he is their favorite. He walks into any room and everyone throws a party for him. Even at home, everyone's is always happy to see him.  The other day I asked his teacher who is extra fond of him, so that I could be sure to include them on my treat basket list.  She came back with 11 names!  From the school nurse to the secretaries!  I followed him and his para into the school to leave the treats in the office last week.  Beans ran in like lightening and I could hear people calling him from the office where he rounded the corner with gusto and jumped on the secretary's lap hugs and tickles.  This is what they do everyday.  Then, on his way to the classroom he gets fives from all the kids in the hall, who know him by name.  He is a popular little guy! 

I guess, when I think of all the happiness he gives to others with his smiles and cute way of just being I have to admit the first part of this post doesn't seem like such a big deal.

Tuesday, December 13, 2011

Anticipating an IEP meeting

Tomorrow, I have an annual IEP meeting for Bubby at his school. We'll be updating his annual goals, as well as adding new ones related to his math issues.  We just had one about a month ago to add language and spelling services to his IEP.  I think I go to more meetings then a CEO.  I got a call to schedule Bean's IEP yesterday.

Today, I will be gathering all of Bubby's report cards, progress reports, ect  that I have not yet added to the monster 3 ring binder than chronicles his life.  From the very first special ed testing, to every doctor's report.  It's all there.  Sometimes, I have info that they don't and they have to take copies of MY files. lol  I have concerns about the work they're doing in speech therapy and am going to request to see data on progress.  I keep letting that area go, and I need to put my foot down.  Now that he is in the Intermediate Center (4th-6th grade or 9-12 year olds) the speech path is by far superior to the old one, so I have seen some progress in his conversational speech, particularly the ability to take more than one (even one is progress) conversational turn during a conversation.  Just last year, he would ask you 100 million very personal questions and then walk away.  If you asked him something, he would likely not answer, or if he did it would be short, without any info.  As a matter of fact, the other day we were going through the annual questions to re-qualify him for community based services (or the &^%$ wait list, since there are no services being given at this time, only space on a list) and he did wonderfully on answering questions.  Not only did I see him do well in answering the questions on topic, but he fibbed... not a big fib, but he anticipated what the socially correct answers were, and answered them that way.  I was amazed.  For example, he was asked " what do you do when you're lonely?" He answered " I find someone to keep me company." Or, "what do you do when you're bored?" He said "I find something to do to occupy my time." Which is untrue.  Both of those things would have required assistance from me and he would have gotten relatively whiny about it, too.  The thing is, he knew that on a social level it was embarrassing to say that he whines and has a fit when he's bored or lonely and needs me to redirect him.  He also told the case manager that he prepares his own food and while he can do some things, he by far still needs me to do most of it.  (and he has a huge meltdown every time I insist he try to make new things himself) It's been a slow process.  The point is, is that he knew most 10 yo boys make their own snacks and that he was different.  I really didn't think he had that concept of himself vs others, but I guess he does.

I have gotten off track on this post, babbling. :D  I will be doing lots of research on dyscalculia and the evidence based treatment options today, so I will be posting lots of link on Inner Aspie's FB page if anyone wants to know more about it, I also apologize to those of you that already follow, but don't want to know more about it if I am clogging up your feed.   Check back there tomorrow for results about the meeting.

Sunday, December 11, 2011

First/Then Bathroom Schedule

This morning we had another little mishap with Bubby using almost a whole roll of toilet paper when using the bathroom, causing the toilet to get backed up.  I have tried lots of times to remind him and chat with him about what is the proper protocol in the bathroom for how much toilet paper to use, and even giving up on that and telling him to use wipes, but alas.... he still struggles.  So, I decided that I should make him a First/Then schedule like I had to with the shower.  I feel he is too old to have me hovering over him in private moments in the bathroom, as well as me being a helicopter mom does nothing to foster his independence. I thought that perhaps I would share the schedule with anyone that might like to use it as well.  This is not an uncommon issue in the autism world.  Feel free to download it if you can use it.

PS. The only reason that I put the first part on there about sitting is because he has a weird phobia of snakes somehow being in the toilet, so he hovers, thus making a mess. I think this has gotten better, but just in case I left that in there.

Friday, December 9, 2011

Class work

Another meltdown happened today for Bubby due to being frustrated when he couldn't keep up with the class.  I'm not sure how to address this.  He IS much slower at doing his work than the rest of the class, but I also know that the teacher can't always just stop everyone from moving on so that he can catch up.  He tends to struggle with spelling due to not having much phonemic awareness (which is currently being addressed in with extra help in spelling) so he has to copy words letter for letter instead of from memory.  That slows him down considerably.  He is supposed to have a para available to him in the situations that it happens in the most, which is the only two classes he switches to another room for.  I'm not sure if he had a para assist him today , or not.  It's my opinion that he needs to leave the room until he can calm down if he feels a meltdown coming on.  He is supposed to request a break.  I know that this is the opposite of what most parents request (and the school staff has argued with me about it as well) but I feel he is way too old to be crying and carrying on in front of his peers.  If he can't get his meltdown under control almost as soon as he gets upset, then he needs to get some quiet time to himself, so that he can calm himself down with dignity.  I don't have many meltdowns where I get that upset and I had fewer than 5 the whole time I was in school, but I am a girl.  I tend to shutdown, before meltdown, but I have had it happen where I can't control my tirade of tears and barrage of insults and blubbering idiocy that comes spilling out.  Those moments are so full of pain, and desperate anxiety.  I would never want to be on public display, so it's my belief that my son should be afforded the dignity of getting his emotions under control in privacy.

We have another IEP meeting set up for next Thursday where we will be updating goals and I plan to bring this topic up, as well.  As I mentioned on the FB page his teacher does agree with me about the dyscalculia and agrees wholly that we should get him some extra help in the maths dept.  I love, love, love his teacher this year.  She is an older lady, old enough to have been my teacher, and so kind and knowledgeable.  She is the one that helped me to pursue CJ's testing for dyslexia.

I hope it all goes well.  I'll try to blog about the results of the IEP and what the team suggests we do about the issues of Bubby wanting the class not to leave him behind in worksheets.

Tuesday, November 29, 2011

Choices

When I was a child I was watching an interview on TV.  I can't remember what show, or who it was being interviewed, other than it was a rock musician, but otherwise it's elusive.  One thing was said that really struck me and I have remembered it for the last 25 plus years.  The person being interviewed was talking about being a good person and how he comes to the conclusion of what constitutes good behavior, and generates good karma.

He said:
"What if everyone in the world acted like I am right now?  What kind of world would that be? What would society look like?  Would that be a world I'd like to live in?"

I thought that was such a powerful statement.  It was easy to understand and easy to apply.  I must've been about 8 when I heard it and understood exactly what he meant.  Sometimes, if I wanted to do something a little naughty as a child I'd think about what if everyone did that? Jumping on my bed... probably not a big deal if everyone in the world did that. (they may even have fun!) But, say I wanted to leave a mess in a public space, just me, just this once... It doesn't seem to be a big deal at that level of misplaced responsibility;ie someone else will clean it up.  But, if one is to think about what if everyone left a mess in Mcdonald's or the park?  What if everyone shirked their responsibility of what is fair and right, even in little issues?  That's very much how I sometimes decided what was important rules, and what was not that important.  It put things in perspective when it's easy to just tell yourself this or that won't hurt... no one will notice if I just....  Well, all those little actions (or inactions) add up accumulating into a bigger part of what makes our society.  We all have a responsibility to do the right thing all the time.  We all have to do our part, and step up to what's right.  We too often feel that we are small and don't can't make a difference.  That's not true.  Everyday, every choice you make, every word you use, every action you do, every time you choose to not do any of those things (because let's face it choosing to do nothing is still a choice) we make a difference, an effect on someone, or something somewhere.  How we use that power, or don't use that power is up to us.

Sunday, November 27, 2011

Time Magazine's December Issue

Just a quick post on something I found that made my jaw drop.....
While most of you argue about whether the Obama's will put up a Christmas tree, or what the Kardashian's are doing now, or who said what faux paux at the latest debates one thing is for certain.  All these petty issues that the media keeps bringing up and putting in our face with a solid 24 hour news feed is designed to keep us focused on inconsequential things.  Our attention is on the drama that the news networks sell us, and we lap it like a soap opera thirsty audience we are. 

For anyone who thinks our media is free and unbiased in the United States, I present you our current Time magazine cover:




Now, I will show to you Europe's , Asia, and the South Pacific:



See the difference?  One is about how fear can be a good thing. The other is about a revolution where the people of a country seek true democracy from their oppressive government.  Wonder why the media here doesn't want us to see this? 

Thursday, November 24, 2011

New Thanksgiving Traditions

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


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

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

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

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

Monday, November 14, 2011

Overcoming The Urge To Debate

The other day my husband and I were talking to each other about ways we have come to understand each other better and build a stronger marriage by that understanding.  I said something about understanding that when he gets upset a ton of super emotional nonsense comes barreling out.  His strong emotions become fact and he doesn't make sense.  He just starts ranting and can even be insulting, and way exaggerative about everything.  He said that I like to argue about everything, debating to the last detail even when it's unimportant.  It went something like this:

Him: I have realized that you like to argue.
Me: I do not.
Him: Yes, you do. You like to debate everything. It's part of who you are and I know not to take that personally anymore,
Me: When?  When do I debate about meaningless issues?  Name a time...
Him: (he just looks at me)
Me:  Awwww ok.....yeah.  I'm doing that right now aren't I?  Oops. Guess, I can be a bit pedantic about some things.

This is something that's deeply ingrained in who I am.  It's been my goal for awhile to learn to let things be sometimes without correcting, or demanding proof of other people's assertions.  It's an odd thing with me... I can be very warm and empathetic, but at the same time very much the opposite when the situation is different.  When I see something wrong, a fact that is being twisted, or distorted, or worse even, an opinion being touted as a fact I *have* to correct it.  My inner drive switches and feelings are no longer relevant to me at that time.  To me in this moment, it is not personal, it's about virtue.  Old conservatives with their rhetoric about Obama, guns, and illegals will make my blood pressure rise in mere seconds.  Don't be opening your mouth around me like you know something when you have no facts to back it up.  Make that speech of yours hateful and derogatory and it's on.  I will let you know just how much you thought you knew and will not allow ad hominem or off topic rants.  In other words, if I choose to take up a debate you best bet I know what I'm talking about, or I wouldn't have opened my mouth to begin with.  I don't debate subjects that I don't know the facts about.

Anyway, this is a habit that I know can be considered off putting to many, and it's time consuming, as well as emotionally consuming.  I can and will get very upset if the other party can't see my POV, especially when I have provided proper proof.  Why would one want to go on believing something false? (I think there's a lot of reasons humans lie to themselves to feel better, but that's another post!) This is something I have set out to change about myself the last 6  months.  Maybe, not completely obliterate, but take it down a notch or two.  I have realized that I have done that quite well in this pursuit this morning.

I saw someone misinformed about a certain issue and make a broad prejudice statement about the whole issue based on a sliver of information.  He does this often on line.  I almost had my whole arguement laid out inside my head ready to deliver through my finger tips when I realized this would likely take all day of back and forth debating.  I decided that I didn't have time for that, and he's just probably going to think what he wants anyway.  Then, I thought about it for a minute and I realized that I have not been so easily baited into debates lately at all.  The other day my father in law started in Obama, Walmart and guns on my....  I did correct him a few times, but I mostly kept it to myself.  He was getting emotional and trying to present a factual argument to someone that's in an emotional mindset is futile, so I directed him to the points we agree on, instead of disagree on and we remained civil.  Sometimes, I feel it's more important to make a person feel heard, and find common ground rather than correcting them.  Perhaps, when less threatened they'll be more open to your side.

In any event, this was a social skill that I have been working on for many years that I think I finally have a good grasp on! Yay me.

Saturday, November 12, 2011

I Need Help!-Why it's sometimes hard for people on the spectrum to ask for assistance.

I thought that I might write a small follow up to the issue that I talked about in my last entry because I did think about it, and despite me thinking that it was something that wasn't informational, I realized that it could be.

In the entry Things You Wish Adults Knew When You Were A Child there are several comments about being bullied, emotional, or otherwise feeling a bit out of sorts and not having a clue as to how to go about expressing it.  One of them is mine.  I guess that's the whole point to my last entry.  I almost never actually say to anyone 'Hey, I'm struggling here, ' or 'help'.  As I said, it simply doesn't occur to me to do so, or I just can't figure it out. When I do finally get out that I'm having trouble as I did on my FB post (I literally said 'I'm falling apart') that's almost an S.O.S. for me.

For one, it's hard to explain my emotions.  I have to figure out what I am feeling, label it, and then figure out how to appropriately express that to another human.  There's a term called Alexithymia that applies to most people on the spectrum. It's basically the difficulty of processing and describing emotions.  I have worked very hard on this, and am able to some degree feel my feelings as they come and label them. It took a couple decades of practice with emotion charts, and perseverance.  It wasn't easy.  It's hard to ask for help, if you can't even identify that you're feeling down, angry, whatnot.  Even physical sensations would not be processed correctly, and still isn't to some degree.  Sometimes, when I am sick I get upset easily and have lots of meltdowns, but don't always process the physical sensation of feeling ill.  I've had strep throat as an adult for a couple wks before I realized I was sick, but was super difficult to deal with during that time!  So, now I know that if I'm getting moody, I may need to check in to see if I am hurting, not feeling well, hungry, thirsty.. ect...

I can now more easily label, say anger when it is occurring.  I can't always tell you why it's there, and am frequently left feeling upset, and not knowing why.  I have somewhat given up on always tracing back the reasons to my upset feelings.  I find it more important that I deal with my feelings in a healthy way, and proficiently, rather than worrying about where or why they are there. I'm still working on doing this steadily.  Not there yet, by far.

The criteria for Asperger's lists:
(C) a lack of spontaneous seeking to share enjoyment, interest or achievements with other people, (e.g.. by a lack of showing, bringing, or pointing out objects of interest to other people)
(D) lack of social or emotional reciprocity

I'd go so far as to say it's not lack of sharing enjoyment that is near as much the problem as is lack of sharing duress.  Either I simply can't due to lack of words, or ability, or it doesn't occur to me do so, literally.  In the same way my family complains that they never ever have heard me say 'I want' or 'I'd like to have' X (signaling them what I might like to receive for Christmas and birthdays) I don't think about sharing what I feel or what I need.  When I do, it may be understated with emotion to the point that an NT would think it was a minor issue.  I was told by the clinician that diagnosed me that my face almost never shows any emotion, at all.  So, as I am telling someone how terribly sad, and depressed I am the flat affect of my face my not convey just how serious I am.  Even on the internet, I may not have the ability to fully express the amount of pain or suffering I am in or how much I'd like some assistance.  When I do, I feel so awkward and so embarrassed that it's likely I will delete it quickly.  Here, not as much, because it's an anonymous blog. I feel very vulnerable and almost ashamed of expressing emotion.  Writing by far is waaay easier than speaking, though.

So, I thought that perhaps my issue I had a couple days ago might be of some use to parents and loved ones of those on the spectrum if explained fully as to what happened.  Why it's hard for us to say we need help, and what the best method is to assist us in telling you ie; writing texting, ect...

Tuesday, November 1, 2011

My Contribution To Autistics Speaking Day

Like many people on the spectrum, I wanted to write a blog entry on Autistics Speaking Day which is today.  I had forgotten about it until today and have no preconceived topic of relevance to really drive a powerful post home.  I know many are writing some heavy powerful, well thought out pieces about what being autistic means to them, and more specifically what it feel like to them to be talked about and around like the original November 1st day Communication Shutdown.  I think that perhaps I'll go another route....

I am overjoyed to see this day so prominently displayed across social networks, blogs, and newspapers.  It was not long ago something like this would never have been thought possible.  You simply didn't talk about your differences in front of others if you were on the spectrum, and parents of ASD kids had little support.  When I was diagnosed with Asperger Syndrome last year the clinician told me that I should tell people that I have AS that I am in regular contact with.  My first response to that was that she was crazy! I'd never get taken seriously again!  Then she explained to me that my communication differences can look like snubbery, inattention, aloofness, ect.... and that I'd get more compassion from others if I told them.  I tried it.  One of the hardest was my verbal son's IEP team.  They had been running circles around me not wanting to give him the proper supports he needed for his anxiety and other differences.  I finally one day in a meeting got all my courage up and shot down their proposals by telling them they did NOT in fact know better than me about what he needs, because I am also on the spectrum.  There was no comeback to that.... It was silent.  But, they heard me, and despite my fears of being further disregarded, I was listened to.  I began to do the same with my nonverbal son's one on on therapists.  I made my beefs with ABA, and other tactics clear.  I explained to them the reasons why some of us do what we do.  They never knew.  It wasn't that they didn't care (well some didn't but they don't work for him anymore due to that attitude) they just didn't know.  They wanted to know, and were happy to hear.  I spoke, and I was listened to. This was a novel experience, indeed.

I actually felt empowered by other's acceptance, and felt more confident.  I began this blog, and to advocate further for my boys.  I didn't take the attitude from the school 'well, that's just how we do things' because I felt empowered to finally stand up and voice my opinion.  There wasn't that long ago that this day wouldn't have happened.  The cloud of shame and secrecy has began to dissipate around the world over disabilities.  It isn't perfect, or utopia, as so many are still oppressed, and trodden, forgotten about, but it is a start.  I think that while things could be improved we have made enough room in today's society to make those changes, to be heard.  In my opinion, there is not a better time in history to be autistic.

Thursday, October 13, 2011

Psychiatrists propose a new diagnosis for early psychosis

I came across This article in the Scientific American that talks about adding a new diagnosis to the DSM V that would pre-diagnose what looks to be early onset psychosis. While I see some potential in this, I think it is too vague in it's nature of what would constitute 'symptoms' and would lead to even more misdiagnosis, especially of mild forms of ASD where we have finally moved away from clinicians misdiagnosing people with AS with psychotic disorders, such as schizophrenia.  I think that medicating something that we don't understand is never a good solution. Anti psychotics always make people calmer and quiter no matter what was the original problem.  It doesn't mean that it solved anything.  I am however all in favor of cognitive behavior therapy, particularly the kinds that involve Mindfulness skills for people that seem to be exhibiting paranoid, or delusional symptoms.  I think everyone could benefit from learning how to be more mindful and more in tune with themselves. I just see too much potential pitfalls in slapping labels on people that may be difficult to remove due to the nature of the label itself, ie; the patient may not get taken seriously after being diagnosed with something so stigmatizing. Being labeled as psychotic, or even potentially so, needs to be done with as much careful precision as possible. I know just how it feels to sit in a therapists office trying to explain my own social awkwardness and sensory issues in the best way I knew how with the limited amount of emotional awareness that I had, and being accused of being paranoid, and being told that it was just my perception of how I perceived others that was the issue.  I feel this diagnosis could lead to more of that prejudice and would outweigh the potential benefits.

Monday, October 10, 2011

Different Perspectives: Dining Out-Part 2

In my Previous post I talked about some of the sensory difficulties and such that can be associated with going out to dinner when one is on the spectrum.  I promised a follow up with some ideas, and suggestions to some of these common problems.

First, let me take you back, just a little bit to how I came about these different ways of doing things.  My older child, Bubby is almost 10 years old.  He is on the milder end of the spectrum, some doctors say PDD-NOS and other Asperger's, and still others High functioning autism.  I tend to to go with HFA, or mild autism, as I don't care much for functioning labels on humans.  Anyway, he wasn't diagnosed until he was almost 5 and wouldn't have been then if it weren't for his brother being evaluated due to his unmistakable autism features, namely nonverbal.  So, I trudged with him in tow to every place, including restaurants treating him as if he were a typical child until autism came into my awareness when he was 4.  He wasn't a typical child and the disparity between my expectations and his behavior became increasingly clear via meltdowns.  He threw a whopper of a meltdown every place we went the first 4 yrs of his life, without fail.  I came home and cried after every time I attempted to leave the house with him during that time.  It was awful.  After discovering he was on the spectrum (and subsequently myself) I was able to arm myself with this knowledge.  I was able to accommodate what he needs to help him feel comfortable in his environment, and this made all the difference.  These little nuggets of info would have made a world of difference in my family's lives 8 years ago, so I am hoping they might help some other parents to be able to go out to eat and have a little time to relax without it being such a drag out struggle.

1. Decide where you want to eat.
I know that seems pretty simple and something you do anyway, but... let's take it back a few steps and think a little more about it.
Firstly, does it have your child's favorite food, or food they like to eat?  Many kids on the spectrum will only eat a small variety of things.  With my boys, they almost always will insist on chicken strips and fries, or pizza.  Where we go must have these things, otherwise there will likely be a meltdown, or at the least some bored kids and wasted food.  You can call someone you know who has been there and ask, or call the restaurant and ask.  Depending upon where you're going, I have been surprised to find menus on line for many restaurants.

If there is a good chance of no food on the menu that your child will eat, and you need to meet at a specific place, say for a social gathering, then you can bring food in with you.  This one is gutsy, and takes courage, but I've done it before when a group of people we were meeting at a European cafe  where there were no chicken and fries, or pizza.  I had my going out to the zoo/beach bag with us, so we stopped at McDonald's and got the boys some food and brought it with us, purchasing their drinks at the other restaurant., and taking our trash with us.  As long as you're patronizing the restaurant you're eating at as much as possible, and it's for special needs only, then I don't see why this isn't okay.

How are your child's waiting skills?  Keep in mind your child's emotional, and cognitive level when selecting a place to dine.  If they can't stay seated for than a few minutes, or has had some major issues in the past with dining out, then perhaps you may be better off doing fast food.  Fast food venues offer quick escapes and quicker overall eating time than other restaurants.  Save the nicer places for grown up times, like dates with your spouse for the time being.  We rarely took our kids anywhere else for a few years, because Bubby was just unable to handle the slower, more formal atmosphere.  Fast food places are excellent places to practice manners and good behavior. 

2. How crowded is the establishment likely to be? 
Any place around where we live that's  any good to eat at, and that's not fast food, is packed during meal times. This is not only an issue for my boys, but also for me.  I can't handle the noise and the crowds.  It really takes away from my whole experience of going out, which I do enjoy doing.  If you know ahead of time that the restaurant might be super busy, then it might be a good idea to go on an off time.  Sometimes, we will go at 5:00 or 5:30.  Other times, we will have a snack and go closer to 7:00 or 8:00. (the later time sometimes is still just as crowded,so beware of that) If it's busy and we need to go at a peak time, due to not planning ahead, or unforeseen circumstances we will split up and my husband will wait inside and me and the boys will wait in the car or walk around until our table is ready.  My husband will text me and the dreadful wait in the shoulder to shoulder crowded corridor is avoided.  Also, I sometimes see if there is a 'call ahead list'.  It's pretty much the same as reservations, but not as strict of format.  That way you can shorten your wait for a table that way.

3. Picking out your table.
I doubt that NTs really ever think about their table placement, much, but I know I sure do!  First, if at all possible, always pick a booth.  I hate sitting at tables.  Booths are much more private, quiet, and block out so much more stimuli. Tables make me anxious and nervous.  Plus, I can kind of pen in my boys in booths.

Next, locate where the most noise is coming from.  The cash register, the door , the kitchen, ect.. Find the table as far away from these areas as possible.  The least amount of traffic and noise, the better.  If you have child who is frightened of motor noises it is imperative you not sit by the kitchen where blenders, and other machinery will likely set off a meltdown. Beans is that way, and it really hurts his ears to be subjected to these noises.

4. Ordering
If you are familiar with the restaurant, or already know what your child is going to eat, then by all means, order with your drinks.  There's no need for the waitress/waiter to take the orders all at once.  If you don't need to see the menu to make a decision, then by all means, get the food on it's way. I know my boys take forever to eat, plus get bored waiting. Letting them get their food quicker is a bonus for everyone! If they are verbal, then let them order for themselves, if they want to. Being able to order food at a restaurant is a very important life skill that may require lots of practice.  It's important that they feel confident and encouraged without judgement.

5. Waiting....
Before you leave the house you should pack an entertainment bag of some sorts.  Bubby is old enough to remember his own, which now consists of his DS.  I used to allow him to pick 2 or 3 Thomas Trains to take to play with, or some other toys that were small and easy to pack up.  Beans doesn't play with toys, but likes to tap on random objects.  Cardboard being his favorite, especially the little boxes gum comes in.  I save those for restaurant and shopping only. They're tiny and novel, because he doesn't get them everyday.  People stare. I let them. They will do that more and more as he gets older and his voice continues to deepen when he makes his noises and taps at everything.  If he gets to loud I remind him he needs to use a 'quiet mouth' but I have no idea if he even understands me.

6. Manners.
This is more meant for parents than the children here.  It's up to us to model appropriate behavior for our kids and to let them know what they can and can't do.  If your ASD child is going into meltdown (and you know what that looks like) and can't get calmed down in less than 5 minutes, then please take them outside to walk around or to sit in the car to calm down.  There was not one time before my son was 5 that my husband and I didn't have to take turns eating at restaurants due to having to take Bubby out to cool down during his many meltdowns.  It's not okay to let your kid scream bloody murder in public and ruin everyone else's meal.  Also, even ASD kids need to learn that it's not okay to scream like that in public.  Meltdowns are to be dealt with with dignity, not in front of a gaping audience.

The same goes for letting your child run around a restaurant.  Not okay.  It's disruptive and someone could get hurt.  I've seen other ASD parents do this before, then proceed to hand out their Autism Awareness cards.  I find that sort of awareness humiliating.  My boys were sitting there nicely while theirs were running around, making all sorts of noise and got so far ahead of them he ran out into the parking lot.  Sometimes, ASD kids do need to move, and it's okay to walk around with them holding their hand, or even take them outside and walk a few minutes if they need to.  I have to do this at times with Beans, though thankfully not Bubby anymore.

I hope that helps make your next dining out experience a little more enjoyable. Let me know if you have any questions or would like to share some tips of your own.

Different Perspectives: Dining Out

This entry I would like to discuss dining out and how that might effect someone on the spectrum.  I'm using the word 'person' instead of child, because I find that they sensory experience can be daunting for autistic children and adults alike.  I will also follow up this entry with a some practical ideas to help make dining out more enjoyable of an experience for everyone.

NT Perspective:
I admit that I don't know exactly how NTs feel while having dinner out... I'm guessing that they have a filter that easily filters out most of the background noise, thus freeing them up to socialize.   They can listen to the music, talk to friends and enjoy their meal all at the same time.  This tends to be a very popular and enjoyable multi-sensory experience for them.  Good food and good company seems to be a pretty common goal for most social experiences.

Autistic Perspective:
For someone with autism dining out can be enjoyable, but is often filled with anxiety.  Oftentimes, some people on the spectrum are very uneasy trying someplace new. They might be unsure if they will like what's on the menu, or how it is prepared.  (Remember, we can get so tripped up in our anxiety that we forget that the current situation isn't forever and that there may be another option that we aren't thinking about at that moment,)  Once inside, there might be a wait, which for young kids on the spectrum might be too much to deal with.  Most restaurants have music playing, which is extraordinarily loud to most of us.  I often find that I can't hear over the music to be able to listen to conversations.  Too much sensory input starts making everything get all garbled. When that happens my head starts feeling confused and cloudy.  I might get irritable.  Very low light bothers me when it's arranged in certain ways.  I don't know how to explain it differently, other than there are some lighting fixtures and arrangements that bother my eyes.  Sitting still in a booth or table can be challenging for on the move types.  This isn't squirmy like all kids get, but a real sensory need to move around and physically interact with one's environment.  I almost always feel cold in restaurants, which make it harder for me to deal with other sensory stimuli that is unpleasant.

With all that being said, my family and I really do like to go out to eat.  It took lots of effort and trials and errors before we have found some workable solutions to some of these issues I've discussed here.  I'll be outlining some of these ideas, and suggestions in my next entry.

Thursday, October 6, 2011

Injustice and Inequality

If you live in the United States you might have heard of the new Occupy Wall Street movement.  Maybe.  It's possible you haven't even though last night over 20,000 protesters marched in New York as well as thousands of others in other cities around the United States.  The media has largely ignored this group of people that have literally moved into an area park by Wall Street.  Most states have their own Occupy [insert city name here] where you can go to protest in your own public space near you.  This page here has the full written text of what this movement is about.  You can also go to youtube and watch the speech as it was given. 

The purpose of my writing this is not to talk a bunch of politics, but to speak about what is happening here in America.  To add my voice to the 99% of those who are crumbling under economic pressure to pay a debt we didn't incur. To speak up against bailouts that we still are holding the bag for while those responsible get away with obnoxious bonuses and no consequences. Those of us who while buying groceries know damn well there won't be enough for rent, or mortgage, and utilities, while the top percent live well off of our hard work. 

My husband, after 9 yrs of back breaking labor, long hours and unwavering loyalty got laid off of his job.  This was after a few other financial emergencies.  We are now in the process of filing bankruptcy.  We are one of the lucky ones that we have incurred debt that can be forgiven.  If everything goes well, we might be able to keep our house and my husband's work vehicle.  We did all the right things.  My husband worked hard and I stayed home to care for our special needs kids.  We live very modestly.  Most of the possessions I own are second hand.  This debt that we fell under wasn't borne out of luxury. My kids have state health care.  My husband and I have none. Everyday, I am terrified one of us will get sick and we won't be able to go to the doctor, or afford proper healthcare.We live sometimes day to day trying to keep food on the table and clothes on our kids backs.My husband works 7 days a week, sometimes up to 13 hours a day.  The cost of living when combined with wages that are not even close to being equal spells out failure for the working class.  Everything goes up, except wages, and that's if you're lucky enough to be able to find a job.  Thousands of people out there are straddled with thousands of dollars of school loan debt that they can't pay, because they can't find a job, and the jobs they can get isn't near enough to pay their debt, nor is it using any of the degrees they worked their ass of to get and now can't use.

All this is bad, but what I fear for most is the future of my children.  Especially, Beans.  I'm well aware of the fact that he will need 24 hours assistance for the rest of his life.  I'm already seeing social security fall apart, with no money to pay for public services like what he is going to need.  I'm terrified that there will be no one to care for him as an adult, or worse, he will be institutionalized in a facility that society can't keep up with, meaning extremely poor conditions.  When there's not enough to go around the most vulnerable will be the ones to suffer the most. That's how it is. Even now, I'm well aware of the ones that are going hungry because they can't afford to pay for a public service like Meals On Wheels, yet they are too disabled to make food for themselves.  The safety net is gone, and basic human needs are going unmet, everyday in this country.  I'm afraid that if things don't change, things will be much worse for my children as adults, and many others like them.

Saturday, October 1, 2011

Different Perspectives: Eye Contact

On this Different Perspectives I'd like to talk a little bit about eye contact and what it might mean to NTs and autistics.  As always, I am only me, so I may or may not be in sync with your experience, or the autistic person in your life.  We're all a little different, but I like to do these Perspective posts about my experiences as well as based on some of the common things I've heard from others on and off the spectrum.  I'm always a little more than worried that I am going to get a hoard of comments saying that what I write doesn't fit their experiences, ect, ect... So,,, with that dislcaimer out of the way, let's talk about eye contact.

Eye Contact for Neurotypicals:
Eye contact for a typical person is a way of communicating.  They can cue into emotions, thoughts, and other nonverbal cues just by looking at each other's eyes.  It's a show of respect and attentiveness to make eye contact with someone as you converse.  No eye contact, or broken/poor eye contact also holds meaning to typical people in the way of nonverbal communication.  It can mean the other person is bored, or finds you unimportant.  It can mean they're shy, or anxious. Poor eye contact can also be indicative of dishonesty, as one doesn't want others to read that they may be lying in their eyes they may look away while fibbing, or ashamed.  To people not on the spectrum eye contact is just as important as the words we use to speak.  So much meaning is attributed to eye gaze!

Eye contact for People on the Autism Spectrum:
I've heard some autistic people describe looking into other people's eyes painful, like looking into the sun.  For me, it's an emotional pain. It feels overwhelming, like a switch gets flipped inside my head and I hear, nor feel anything else. My adrenaline goes up, and I feel like running away. I will look away as a way to ease this and to pay attention to the other person.  I can't hear and look at another person at the same time.  It feel to me like a gross invasion of my space, of my being.  It feels like someone is taking something from me which is so personal and part of me.  Something that I am not willingly giving, but is being taken by force. It feels so personally invasive, as if someone is reading my thoughts without my permission.  I obviously know that no one can, or is, but it feels like they are.  If I am having to feign eye contact for something important, say a job interview or something similar, I am too busy counting seconds and trying to be appropriate with the amount of eye contact that I'm avoiding staring or looking inattentive, yet I am being very [preoccupied with all of this to the point that the very thing NTs  do to show attention is the opposite of what I am doing.  There is no point to doing it, as it doesn't indicate my level of attention, nor will I ever get any kind of communication from it.  It is purely for show, and is quite painful for most on the autism spectrum.



I would urge parents to think about this before making eye contact a big deal with their ASD kids, or a part of their therapy plan.  I know it is common for speech paths in particular to bring a desired or requested item up to their eyes making the child fix eye gaze before receiving the item.  I will not allow such methods to be used with my boys.  To me, it is disrespecting who they are and their rights to feel safe, and have their personal space.  I'd never allow anyone to do anything to them repetitively that makes them feel antagonized, or fearful, yet this is exactly how eye contact makes most on the spectrum feel.

With that being said, there are some situations where an adult on the spectrum may need help learning how to feign eye contact.  I mentioned job interviews, earlier.  That one is a biggie, becasue as unfair as it seems, that few minutes of nonverbal communication is crucial to whether or not a company is going to consider hiring you or not, even if you have a killer resume.  Unfortunately, I do feel that this is much more of a stigma for males than females, who might come off as passive, shy, and maybe a bit submissive if they don't make as much eye contact.  Males might look the same (which unfair as it is, will be held against them) as well as other more devious characteristics might also be wrongly assumed by an interviewer.

I'd love to hear your thoughts about eye contact and what it means to you.

Friday, September 30, 2011

Fall Decorations with Bubby

This is one of my posts that really have no real moral, or thoughtful point to it.  Just a post to be chatty and not so serious, because honestly who wants to be serious ALL the time? Not me.

Here this last week my son, Bubby has been nagging about doing fall decorations.  I know what you're thinking.. wow what a little interior decorator in the the making... No, not quite.  He's not the creative type, really. No, it's more about the calendar change.  He's obsessed with calendars and dates.  He checks the calendar in our kitchen several times a day.  We often joke that he can feel it when I write something on the calendar at school.  He seems to have a sixth sense in knowing that sort of thing.  He checks and rechecks everyday for any changes in routine and schedules. He memorizes every little appointment and holiday.  He wants to know everyone's birthday when he meets them.  Then, he'll want to know your family memebers birthdays, and possibly anniversaries.  He's always full of questions about your stats (another obsession). 

So, when he saw that the first day of fall came and went, he asked about the fall decorations (all 3 of them lol).  He has asked everyday since, even though everyday I tell him I do it on the first of October.  I have my routine, too and refuse to budge from the comfort of my own schedule, which is fall decorations come out on October 1st-31st since they are Halloween decorations.  All of them were also given to me, as I'm not the type to think about seasonal (or much of any other for that matter) decorations.  Since he's so fixated on fall decorations I thought it would be nice to google some fall crafts that he could easily do that we could hang up. I thought that might be a fun thing to do this weekend.

Then it will be time for more holidays, which he's already asked about.  The other day he asked 'what kind of Christmas activities do we have planned?' lol

Tuesday, September 27, 2011

Mindful Depression

I thought that I ought to do a little update since Last post was gloomy.  I am feeling much, much better since.  So, much so that I contemplated deleting the post where I talked about my depression.  I expressed in it how uncomfortable it was to write it, and it's even more so to leave it there after feeling better. 

So, I explored that thought, that feeling...

Why does it feel uncomfortable post about my depression?  Answer: It's personal.  I don't want others to think that I'm loopy.

Why do you think others will think that, and why does it matter if they do? Answer: I just feel that they will judge me, and think I'm unstable or weird or whatever.  I want to look like I have it together, and when I talk about the darker side of me, it does not look like I am together, and in control.  I don't want to be seen as less than.  It matters, because I won't be heard, or held in the same respect as others. 

I could go on about why it would matter to be seen together and in control, but I think that I already answered that.  It comes down to not letting my guard down and being seen for who I am wholly and fully, because I am well aware of the consequences of being viewed as not important or even less than.  This is not an illusion, or some kind of cognitive distortion.  This is how people with disabilities get treated everyday.  This is why we shun the term altogether and make up new ones like 'differently abled' but that doesn't change the social stigma over the whole issue.  Putting a new name on something doesn't change the social implications or consequences of the state of being of someone with differences. 

Still, I choose to leave the post there.  There is nothing to be ashamed about if at times we feel depressed.  If you have AS, this more than likely, is going to be a recurrence in one's life.  There is no reason to judge it as bad, or horrible, or something we must get away, hide away from.  That's how we fuel such negative thoughts and feelings. Melancholy is just an emotion.  It's not something that's bad, or good in and of itself. The judgements we put on it, the feelings we associate with it, can be, but the feeling itself of being melancholy, well no.  I have explored through mindfulness that it's the fighting against certain emotions, the fear of them, that makes one suffer.  Pain doesn't always have to equal suffering.  I felt down, but it was temporary, and I knew that it was when I was in that state.  Depression isn't me, but just a impermanent emotion.  I didn't get too caught up in identifying it, or trying to get away from it.  I did make choices about how to deal with it.  I chose to not become too absorbed in it, and to do positive things that I listed in my last entry.  That's all we can do.  One choice at a time brings us closer or further from where and who we want to be.  Every minute of everyday, we have these choices.  When added together they make what is our life.  I can't choose not to be depressed, but I can choose to take a walk, or eat healthy, or share a kindness with another person... all things that might be mood enhancing. 

So, yes, I am leaving the entry where I talk about my depression.  In the culture where everyone is supposed to be happy, and positive and strangers tell you to 'smile' ( I fucking hate that) it's almost taboo to be not happy.  Too much emphasis is put on positive emotions and the ones that are more negative are considered not equal to the 'good' ones, when in reality it's our perception of what these states mean that matters more than the actual states themselves.  All these false perceptions of what we need, who we are... illusions that we keep believing. 

Sunday, September 25, 2011

Ugggg..Depression (again)

This is one of those posts that I'm not sure if  I ought to write.  It's personal. It's about how I feel and not so much applicable to the reader as it's not informational to them.  I feel more effective as a blogger when I write more impersonal posts, but sometimes, what's on my mind first and foremost is my own life and my own feelings about it.  This week has been one of those weeks.

I am noticing depression easing itself back into my life, clouding my view, and making everything blah.  I think there's a lot that is contributing to this, but if I were more centered and mindful it would not effect me as much.  I don't want to be back where I was last winter.  That was one of the worst times in my life emotionally.  When I was diagnosed with Asperger's Syndrome I was also diagnosed with Dysthymic Disorder .  I thought that it wasn't really that much of an issue and just a part of having AS.  I'm still unsure how valid a separate diagnosis for my mood is, but I can't deny that I have some major issues with depression.  I have felt better these last 4 months.  So, so much better.  I don't want to go back to the way I had lived my life these last 20 some years.  I now know that the dull melancholy that had accompanied my thoughts for as long as I could remember didn't have to be there. That I can have a much more positive outlook that can have much more positive consequences.  I felt comfortable and okay with myself for the first time ever that I could remember.  Here this last week or so I have been feeling all of that fade away.  I have been feeling less than a person this week and that is a state of mind that I don't miss.  I feel as if I have failed at everything I have ever tried to do, and if I keep on this track of thinking suicide will look like a good option again.  I don't want to go back to that dark place again.  I need to get a plan of action going.  So, this week I am going to not give into my tiredness.  I am going to exercise, like I have been.  I am going to try to be in control of what I can and let the rest be, including other people's opinion and reactions to me.  I'm not going to give in like I have most of my life. I'm going to meditate and keep on with what I know is a good direction, even if in this moment nothing feels good.  I can't go back to being so down that nothing seems motivating.  I hope this time I can turn things around.  Undoing 20+ years of conditioning isn't easy, but can be done. 

Tuesday, September 20, 2011

Different Perspectives: Hugs

Sometimes while I am poking around on the internet I read things written by parents and spouses of autistics.  I am convinced that there is a major communication meltdown between NTs (neurotypicals-meaning someone without a neurological difference such as autism) and those with ASD.  I do think that there are times where people are just being selfish and uncaring on both sides, but I do feel that most of the time it's more about people getting their feelings hurt and reacting from a place of pain.  We don't always make our best judgements or behave at our best when coming from that place.

So, I thought I'd try to offer up a few of the most commonly read ones and an explanation for what might be going on for both sides in an effort to bridge the gap a bit,  Obviously, I am only one person with one point of view, so I may be off the mark a little bit, or a lot for how these situations may have been or will be experienced in your life.

I think that I will make this a series with one example being cited a a time.  Kind of like those relationship articles where they have He said She said and then the counselor's turn to moderate and discuss the issue.


"My son/daughter/husband/wife doesn't respond to my affection." or "He/She runs away from my hugs and kisses"
Translation:
I show my love with physical affection and when you reject that, it feels like you are rejecting ME.  I feel hurt and alone without frequent physical touch as a part of my daily routine . (especially for spouses)  As a parent, I feel helpless when you cry and I can't comfort you.  I may even feel like a bad parent.  I sometimes feel ignored and unloved by your lack of reciprocation of physical affection. I feel abandoned and uncared for.

What the person on the spectrum might be thinking:
Hugs can feel suffocating and scary. I  may not be able to read nonverbal cues well enough to know when, or how long a hug might occur, thus making physical contact seem unpredictable.  Light touch is often aggravating.  Deep pressure may work better than light brushes. (they make my skin crawl just thinking about it) One of my sons enjoy being squished up in a blanket.  This might be a good alternative to hugs.  Trust is important and trying to force physical contact in one way to be sure I will not trust you.  Let me cue you when I am ready and be gentle.  Provoking anxiety will only make me  feel more distrustful and leery.  I can show my affection in other ways, like doing things for you to show I think of you and care.  Please, look for alternative ways I might be showing my love, like remembering to do a chore for you that you dislike, or making something for you.  Some children that are on the severe end of the spectrum like to carry around objects from the people they love most.  This can be shoes, clothes, jewelry, or other personal items that have your scent on them and remind them of you.  This is their way of being close to you.  For my spouse, I like to show affection, but only but only when he listens to my sensory issues and doesn't do the things I dislike.  Clean shaven, no light brushes on my skin, no stinky breath, ect.. Respecting my space and my being results in more hugs and kisses for him.

Monday, September 19, 2011

How Rules Can Help With The Big Picture

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

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

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

Wednesday, September 14, 2011

Organization Tips for Autism and ADHD

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

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




DAILY TASKS :                          

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

 NEED TO GET DONE:

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




   PROJECTS: 

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

                                                                                                                                                        NOTES:   

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

To-do Lists Revisited

In some previous posts I have spoken about not taking a to-do list too seriously.  I am trying to find the happy medium that lies between rigid schedules that leave no room for flexibility, and being human... and the other end, which leaves me feeling like anxious and irritable at the end of the day due to a messy house, tasks not getting done, or getting done last minute out of necessity. 

I've tried many methods to organize my time and get things done.  When I was a teenager I used to use a notebook with a daily agenda grouped into categories of things to do.  Many of these things were daily activities that most would never forget to do.  It's not that I would forget, necessarily.  It's more along the lines that I would feel overwhelmed at the prospect of things to do, not know where to begin, and then not do it.  If I list out the tasks I feel in control of a visual cue that I can now use as a tool to organize my thoughts, and put myself into action. 

As I got older, I have tried many different strategies, but many have looked similar to the one I devised as a teen.  The latest one that I have been using for a couple years (and need to get back to) is one that I have a master copy of, and I print 30 or so sheets at a time. I'll see if I can type up a rough visual of it in the next post, as well as some tips for keeping organized with ADHD and ASD.

I guess my biggest issue is that I struggle with keeping up with doing what I know works.  It's like the previous post where I discussed slip sliding back into bad habits, and ineffective ways of coping.  I know that I am happier when I am on schedule, but sometimes I can't get myself to get moving. I need to keep myself involved and committed.  I know the results I want, and now I need to put in the effort to achieve them. 

So, for today... I am going to write out my schedule, since it has changed since the kids have gone back to school.  I don't handle routine changes well, so that might be part of my 'I don't know what to do' feeling.  That's why I get so upset when my routine changes.  I can't automatically reroute a new schedule in my head.  I wish my brain saw the big picture, and could easily do that, but it can't.  I am always swallowed up by details to a point of being frozen, which is how I've been feeling.  Analyzing to the point of paralyzing.  After writing out my schedule I am going to make a few new rules about how I spend my time and stick to it, hopefully.

Tuesday, September 13, 2011

The Resurfacing Of Old Habits

Ive done a lot of writing here in this new blog about changing my negative habits into more positive actions.  Things like that are hard to start, hard to keep going and even more difficult to keep at it long term.  I'm finding myself slip sliding back into some of the old habits that I had let go of.

Before I started this blog I spent a lot of time on internet forums, and most particularly in in 2 groups that I started on a social networking site that were very active.  It is no surprise that I ran into lots of people that had very different opinions than the ones I had, even the group that was for autistic people only.  We didn't always hold the same viewpoints on issues.  The thing was, is that I would get upset and worked up when someone said something that I found to be inconsistent with how I perceived the world.  To me, it felt like they were invalidating me, as a person by telling me that what I know and how I feel was wrong.  After embarking on my journey of Mindfulness and meditation  this feeling faded to almost nothing.  I gained self awareness and in turn awareness of how others can see the same thing as I do and come away with a different interpretation of it. I saw shades of gray where there weren't any before.  I also saw how much time I spent thinking about and being involved in negative patterns.  I realized that this only contributed to me depression and if I were to ever feel positive, I had to stop looking for what was wrong and search for what was right.  My husband called this 'looking for what or who is slighting Quiet C.' thinking.  Now, don't get me wrong, growing up in a world that is not made for someone on the spectrum had it's challenges. I plan on doing a blog entry about that, to help parents understand why their kids fight so much with their siblings and pull the 'not fair!' card so often.  In short, the world isn't fair to us, and everyday it IS a struggle to be in it, as the odds are often stacked against us.  But, I carried this attitude with me like 100 pound bags of heavy emotional baggage.  It was always there weighing me down.  It was negative and attracting negative things and people.  I felt emotionally worked up all the time.  I engaged in endless debates with others, instead of using my time to promote something that would make my life better, or even someone else's.  I wanted to correct ignorance.  I knew that if I showed them enough evidence that other's would have to see it my way.  It was just a waste of time. Hours spent typing, all while growing more irritable about the injustices of the world.  I didn't realize that the more I focused on that the worse I'd feel.  I took other people's opinions way too seriously, and I'm starting to see myself do that again.

I have spent much of the last 4 days in a hot debate with others about a subject that we're never going to agree on, and that is not positive.  I have sacrificed my very precious little time that I have outside of caring for my kids arguing.  Housework has gone undone, and exercise has been cut in half.  This is not the person I want to be, or filling the goals that I have for myself.  I want to be someone who stands up for what I think in a positive way, not finding drama in everyone else's opinion and making it be about me personally.  I want to raise positive aspects of autism, with things like using this blog and some other presentations I've put together and helped with.

There's a lot wrong in this world and if you look for the bad things in it, you'll never be short on things to complain about, or get upset over.  I'm passionate and want to make a difference in the lives of others, and I know I can't do that if I spend everyday fuming over injustices.  I have to be the change I want to see in the world, so with that... I am back on track, hopefully.  I choose to use my energy to promote positive endeavors and ideas, instead of fighting against negative ones.

Thursday, September 8, 2011

Use Your Words

There's this phenomenon that happens to me sometimes when I'm talking to someone.  It's a source of great frustration.  It occurs at different times. There's more than one type, but the end result it always non-communication. 

For example, I might have something that happened to me that I'm excited to talk about,or something I read. (Yes, I get super excited to share things I read about with others. :) ) I wait all day for my husband to come home so I can tell him.  He comes in and starts talking about his day.  He goes on and on... totally not following my script of what I envisioned.  I begin to try to reroute the words to fit the new criteria.  I can't.  The words get stuck.  They won't come out.  They swim around inside my head in circles not making sense.  I feel so frustrated that I want to cry, and sometimes I do.  I have to wait until later to tell him what I wanted to, because at that moment I am way too overwhelmed.

Another scenario is when I am in a group of people having a conversation.  My brain can't seem to process their words fast enough to keep up with the conversation.  I have words that I'd like to add to the conversation.  I have opinions that I can vaguely make out inside my head with fuzzy pictures and fluttering words.  I just can't get them out fast enough.  This also happens when I get overwhelmed by sensory or emotion. I feel like a computer running on too little RAM.   I can type, but feel overwhelmed with the prospect of verbalizing what I want to say.  Sometimes, I will repeat the same thing over and over.  Others, I will give a quick short answer that may not be my true thoughts, but rather what I think will get you to leave me alone, because my real explanation would take too many words and right at that moment, each word verbalized is painful. 

The frustration that this causes immense.  I have to wonder if this is how my nonverbal son feels all the time? Does he have these elaborate thoughts, or even simple wants and needs that he desperately wants to share with others, but can't?  When I get this way I find it so isolating.  I feel like I can't connect with others, because there is this wall of miscommunication between us.  Does he feel this way all the time?  Does he feel this way sometimes?  Does he feel lonely?  I know that I do at times when I can't share my thoughts.

So, when you ask an autistic child to 'use their words' as is so common, please, please remember that they're probably trying their best.  They're already frustrated about it and aren't not using their words just to be lazy or get out of putting in effort. 

Monday, September 5, 2011

Finding Option B

For as long as I could remember I have always felt that I had to hide my social inadequacies away.   The burning shame I felt when (and still do to be honest) when I stop and think about my social blunders and shortcoming is overwhelming.  I felt that I could not ever let anyone know that I don't know what I'm doing.  That I'm just following a script and hanging on for dear life to get through a conversation.  I think to some extent everyone who has anxiety, or is shy feels this way. I felt deep down inside that this social awkwardness meant that I was less than other people.  That I was defective.

By the time I got to be about 11 years old I noticed the social differences that I had.  I began trying to fix them as best I could. Sometimes, other girls might take me in and give me some pointers on how to be more cool.  I began to obsess.  My special interest during the years of 11-15 were all about trying to not be a freak. I made sure my appearance fit the bill. That was almost easy.  The small talk with peers and all that goes with it... not so easy.  I was never the type to talk too much, or be inappropriate.  Unlike some aspies, I just don;t talk at all in groups.  I rarely can keep up with the small talk that's swirling around me.  The topic changes and moves in a rhythm that I can't keep up with.I literally have nothing to say.  By the time I was 15 the toll had been taken and anxiety and depression set in.  I could no longer keep up in a world that was not made for me.  The mask slipped and I was there exposed as an alien to this world.  It was around this time that I began to collect Chinese dolls with their faces painted, as well as the masks.  I think it was a symbolic gesture of how I really felt.

The social issues didn't get any better as I grew older.  As an adult, I have had very few friends (not counting internet friends), and almost none that were what I'd call a good friend.  It seems to be much harder as an adult to socialize.  I have really no friends right now, and have not had any for probably 6 yrs.  The difference now is in how I view my social isolation.

When I was younger I thought that I wanted to be a part of the crowd.  I thought that I must like what everyone else does, and that I just didn't know it. I thought that if I just tried harder I would be like them.  I thought there was no option B.  There was only be like them-option A.  When I couldn't self pity and anger set in deeper and deeper with every passing year.  I felt ashamed and embarrassed of my differences.  I felt angry at the extroverted ladies that seemed to be better than me in everything- of course this was not reality, but it was my thoughts at the time.  I felt that I'd never be anyone's favorite.  If they were given a choice of who to be with, I'd never be at the top of anyone's list.  I was destined to be the 'back up friend'. The back up friend is the person you call to hang out with last minute, because all of your other friends already had plans and you can't go out alone.  They are always your last choice, but you keep them around for convenience. Most typical people have back up friends to some extent or other, especially younger people.

Then I came upon option B.  If I couldn't change the situation, then I had to change the way I looked at it.  I began really listening to other ladies talk to each other when I was out in public. I noticed what they did and how they acted.  I realized that I'd be bored to death and not at all on the same wave-length as most of them.  Their conversations were not anything I'd like to talk about.  Their outings were not to places I like to frequent.  I could tell they shared to share and not really to get real feedback.  I could never do that.  I talk to share information, and never ever to connect with someone in some sort of empathetic bond of emotions.  I realized that the thing that I'd been chasing after all my life was something that I didn't want anyway.  It was not what I thought it would be, nor was it all there was. I realized that there was an option B, which was I could be happy and content doing my own thing by myself.  I have a husband who I actually do think I'm his Favorite!  I have a family to love and take care of and that's all I really need.  I am happier sitting alone in the park on my laptop or with a book than with a friend and that is okay. I am okay as I am without needing everyone else to validate my existence, or my experience. 

Friday, September 2, 2011

Dreams

I awoke this morning with a dream stuck in my head that I knew meant something important. No, I don't mean in a psychic prediction sort of way.  I don't believe in that sort of stuff. I mean in a subconscious, psychological, symbolic sort of way.  

Dreams have long been of fascination to me.  I believe they contain a lot of stuff that we have going on behind the scenes.  Our thoughts and emotions are woven intricately into stories of faraway places, as well as the mundane. They represent the ideas, hopes dreams, as well as our deepest fears, and forgotten memories.  I have studied dream symbols and dictionaries, and kept dream journals for many years.  Not to brag, but I am quite good at deciphering the meaning of mine and other people's dreams and helping others to find direction with what their subconscious is telling them. 

In last night's dream I was at a place where they teach people to canoe.  All the participants were couples, so I was waiting my turn for instruction with my husband.  What was odd about this place was that typically one goes out to a lake for to canoe, but this was at an ocean.  I felt confused and and intimidated by going the task ahead of me.  I started searching for new clothes to wear and was trying on different outfits. (This is a common theme in my dream) The instructor told me that it wouldn't matter what I wore, because being in the canoe was all I had to worry about.  So, then I protested that I can't do it, because I can't swim.  She told me that no one ever falls out of the canoe.  The most important thing about learning to canoe is doing it.  She said she guaranteed 100% that I would not drown.  I awoke when my husband and I got in and began paddling away into the rushing waves.

According to dream dictionaries a canoe means that one is headed for peace and serenity, as well as emotional balance.  It's a sign of independence and emotional balance. It's also about being able to go on with determination.  I feel like this is symbolic of the place that I have come to emotionally through trials and hard work with my husband.  My journey through a harrowing depression has been hard, but I do feel that I have found a place of peace to rest in with my new found use of mindfulness and meditation. 

The changing of the clothes is also a telling reoccurring symbol for me. Clothing represents our public self in dreams.  It is who we try to be for the rest of the world. They are our image.  In my old dreams about clothes, I am usually changing into clothes for an important event where there will be lots of people, but none will work. They are always too small, mismatched, under dressy, or over dressy.  One shoe is lost, or doesn't fit.  In this dream, my clothes fit, but I was not sure which to wear.  This suggests that my image or role is changing, and I'm, trying to adapt to keep up.  The answer the teacher (my wise mind) gave me was spot on.  It doesn't matter how you show up to meet the challenge, just as long as you show up.  All of my anxiety over how I look and weather I measure up to others doesn't matter.I can feel inadequate, but I don't have to give in and sabotage my efforts with my feelings. I think the lesson is finally sinking in.

The ocean in my dream has much the same meaning as the canoe.  It's a symbol of refreshment and unhindered courage.  I am feeling empowered and positive. The waters were a bit rough in my dream, but I felt prepared. 

All in all, I feel this was a positive dream about equilibrium that I have recently found this last year.  I feel that it is a positive sign that the practice of mindfulness and compassion has begun to change my perspective for the better.  My anxiety is no long in the driver's seat and with that I have new purpose.

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.